Fighting Prejudice in Japan: The Families of Hansen's Disease Patients Speak Out

By Ai Kurosaka

This collection of twelve life stories delves into the experiences of families of Hansen's Disease (Leprosy) patients who tell their own stories in their own words. In detailed interviews spanning more than ten years, Ai Kurosaka presents their struggles from the previously neglected perspective of family members of patients. The storytellers tell how they were torn by experiences of separation, discrimination and broken relationships. Like fugitives, many spent years hiding the truth and deceiving others to protect themselves and their families, and they reveal how this affected their relationships with others, but also with themselves. These recollections reveal agony and repentance, but are also stories of resilience that show the courage of the storytellers in speaking up and in challenging the government's policy on Hansen's Disease. This book breaks the silence of families of Hansen's Disease patients and seeks to restore relationships for families of patients and the wider society.

• Language: English
• Publisher: Trans Pacific Press
• Release date: Jan 20, 2022
• ISBN: 9781925608298

Book preview

Figure

1.1: Hansen’s disease sanatoriums in this book

Photographs

1.1: Harumi (second from right in back row) in Tatsuta Dormitory

1.2: Photo taken before entering elementary school

1.3: Imperial Prince Takamatsu (Nobuhito) on a visit to Tatsuta Dormitory in 1954

2.1: Ryoko Miyazato at around the age of four

3.1: Picture of K when she was three years old

4.1: Nobuko in her elementary school years with the man who was her father’s fellow resident and guardian

4.2: The guardian couple of Nobuko’s father took her and her mother to Hirosaki Castle

8.1: This photograph was taken in 1939 in the town of Tatsugō in Amami Ōshima, Koichi’s mother’s hometown

8.2: Koichi with his eldest daughter in 1970

9.1: Toshihiko Umezawa as a young man, with friends

10.1: Gwangnam with his mother and two sisters in the summer of 1956

10.2: Gwangnam (center middle), nine years old, on his departure from the orphanage in the spring of 1964

Acknowledgements

More than ten years have passed since I began meeting families of Hansen’s disease patients and hearing their life stories. I am very fortunate, as a researcher and as a human being, to have been able to complete a piece of work while being involved with each of the interviewees over such a long time. This book has come into the world because of each and every interviewee who shared their life stories with me.

I extend my special thanks to everyone at Rengesō no Kai (Association of Families and Bereaved Families of Hansen’s Disease Patients) for always giving me a warm welcome from the very beginning of my journey to learn about the Hansen’s disease issue, when we met in Hansen’s disease-related gatherings, and also for sharing their time with me and encouraging me in many ways when I traveled to various sanatoriums for fieldwork. Naoko Kunimune, who is a member of Rengesō no Kai and the West Japan Attorney Network of Hansen’s Disease Government Liability Lawsuit, provided ongoing advice to help me understand this issue. The idea to compile individual life stories of families of Hansen’s disease patients, collected through interviews, into one book originated in a Rengesō no Kai meeting. I wrote so slowly that everyone asked me if the book was ready for publication every time I attended a meeting. Now that I have finished writing, I feel relieved, but at the same time I feel like I miss it for some reason.

I also thank the residents and former residents of Hansen’s disease sanatoriums across the country who shared their stories. Although this book is an assemblage of life stories of families of Hansen’s disease patients, I drew a lot on my experiences of interviews with the residents and former residents in understanding the stories told by the families. Regrettably, every time I have visited any sanatorium over the past several years, it has become commonplace to hear that a person I interviewed in the past has passed away. Among a long list of people I miss dearly, I would like to especially mention five people here. Koji Suzuki and Takao Maruyama from Kuriu Rakusenen always welcomed me into their rooms and told many stories when I visited Rakusenen each month to compile Kuriu Rakusenen Nyūshosha Shōgenshū (Collection of testimonies by residents of Kuriu Rakusenen) (Kodama, Fukuoka and Kurosaka (eds) 2009). Michihiro Ko and Yuji Kodama, who were the chairs of Zenryōkyō and Zengenkyō respectively, taught me many things that I needed to know to understand the issues. They were true fighters and I feel humble just thinking of them. Masahiko Inaba from Kikuchi Keifūen also met me with a smile every time I visited the office of the residents’ association. Mr Inaba was particularly interested in the issue of families of Hansen’s disease patients. My deepest sympathies and gratitude go to all of them.

I had an unstable job as a part-time university lecturer for a long time but, fortunately, I was able to take up a post as an associate professor in the Department of Co-existing Society Studies at the Faculty of Economics in Tohoku Gakuin University from April 2014. This is my first book as a sole author and I was able to add the final touches to the book in a steady environment that allowed me to spend plenty of time on research and education. I would like to express my appreciation to my colleagues in the department.

My slow writing caused a great deal of inconvenience for Takako Kadomatsu, an editor at Seori Shobō. She kindly accepted my request to publish the original Japanese version of this book before May 10, 2015, which was when the family breakout session of the eleventh social function of the Hansen’s Disease Association for the People was going to be held in Tama Zenshōen in Tokyo, but I held onto my manuscript until the very last minute. I would like to send my apology and thanks. (Also, I would like to take this opportunity to thank Seori Shobō for giving permission for the publication of the English version.)

Last but not least, I express my sincere gratitude to an emeritus professor at Saitama University, Yasunori Fukuoka, who walked alongside me on this decade-long journey of interview studies on families of Hansen’s disease patients. I have learned so much from Mr Fukuoka’s attitude as a field worker and as a sociologist over the past ten years. The families of Hansen’s disease patients featured in this book are part of the joint research Mr Fukuoka and I have conducted on the issue of Hansen’s disease, and he gave me the opportunity to publish the results from this collaborative project as a sole author. He also helped me greatly in putting together this book. I could not be more thankful to him.

This book is part of the research results that received Japan Society for the Promotion of Science Grants-in-Aid for Scientific Research (JSPS KAKEN) grants 19530429, 22330144, 25285145 and 18K02003. I would like to express my gratitude by specifically mentioning this.

This book is an English translation of Hansenbyō Kazokutachi no Monogatari, which was published in Japan in 2015. I am glad that the experiences of families of Hansen’s disease patients in Japan can now be shared with many people around the world across language barriers.

In Japan, many books have been written on various topics related to Hansen’s disease, including how the national government’s segregation policy was a ‘mistake’, the struggles faced by people who were afflicted with Hansen’s disease, and about people’s lives in sanatoriums since the Government Liability Lawsuit on the Unconstitutionality of the Leprosy Prevention Law ended in the plaintiffs’ favor in 2001. Despite that, there has been very little attention on the problems experienced by patients’ families. Therefore, when I published the original Japanese version, I had a grim view that there would be a significant change in the situation.

However, something unexpected happened after this book was released in Japan. In the spring of 2016, the class action by Hansen’s disease patients’ families was filed in the Kumamoto District Court. In the class action, as plaintiffs the patients’ families demanded an apology and compensation from the national government on the grounds that not only the patients themselves but their families also were victims of the Hansen’s disease segregation policy. The people of Rengesō no Kai, who have become my close friends, decided to take the class action and it became national news. The suit was joined by a large number of families of Hansen’s disease patients from every corner of the country who had remained silent until then. The number of plaintiffs reached a staggering total of 568. For Rengesō no Kai, being a small-scale organization with approximately fifty members (of whom only about ten or so actually attended meetings), it was indeed very remarkable how the lawsuit spread so extensively. The trial is being fought as I write this acknowledgement. The government is flatly denying the plaintiffs’ claim, arguing that the damages from the segregation policy did not extend to patients’ families. (The photograph on the cover of this book, taken by Takuya Okamoto of Kyodo News, shows a plaintiffs’ rally at the front gate of the Kumamoto District Court on April 27, 2018, prior to giving testimony in the damages suit. The women in the front row from left to right are Harumi Oku (storyteller of Episode 1), Ryoko Miyazato (Episode 2) and Nobuko Harada (Episode 4). Holding a microphone is Chikara Hayashi (Episode 7), the leader of the plaintiffs’ group. A man, standing in the middle of the back row, is Gwangnam Hwang (Episode 10). The vertical banners read, ‘The Government Should Apologize and Compensate Us, Families of Hansen’s Disease Patients’, and the horizontal one says, ‘Share Our Mind!’.)

Looking back, this book was one of the steps for families of Hansen’s disease patients in Japan in raising their voices. I could not be happier as a researcher to have been able to witness this process. I am proud that the interviewees introduced in this book are calling this book ‘our book’.

On May 20, 2017, the Japanese version of this book was awarded the first Michihiro Ko and Yuji Kodama Commemorative Human Rights Award at the thirteenth general meeting of the Hansen’s Disease Association for the People, which was held in Okayama City in close proximity to two Hansen’s disease sanatoriums, Nagashima Aiseien and Oku Kōmyōen. Chikara Hayashi, Gwangnam Hwang, Ryoko Miyazato and Nobuko Harada, all storytellers in this book and plaintiffs of the families’ lawsuit, joined me on the stage to celebrate at the award ceremony.

Finally, I would like to express my sincere appreciation to Yoshio Sugimoto, who made it possible for this translated English version to be published. I wonder how many years ago it was that I had the honor of meeting Mr Sugimoto at a hotel lobby in Tokyo with Mr Fukuoka when I was still a graduate student. I hope by having this book published in English by the great Mr Sugimoto, who has been committed to introducing the achievements of sociology in Japan to the world, that the experiences of families of Hansen’s disease patients in Japan will be shared with people around the world – people who suffered from Hansen’s disease, their families and many others who are interested in this issue – and will help to create solidarity.

Ai KUROSAKA

Sendai, Japan

July 2017

Introduction: From ‘speaking about families’ to ‘spoken by families’

This book contains twelve life stories of families of Hansen’s disease patients – people who have one or more family members (parents or older siblings) with Hansen’s disease but have not developed the disease themselves.

Although a considerable number of autobiographical books have been written by former Hansen’s disease patients, only a handful of publications depict the experiences of families of patients. The series of writings by Chikara Hayashi and memoirs by Ryoko Miyazato, both of whom also appear in this book as interviewees, are the only ones available to my knowledge. (Bibliographic information is available at the opening of their respective life stories. I highly recommend you read their books, too.) Some studies on Hansen’s disease issues have included narratives by patients’ families but much of the focus has been on the experiences of the patients themselves, and the experiences of their families have not been the primary consideration. Moreover, most have adopted a style in which only small portions of fragmentized narratives are presented, rather than the speakers’ life stories in their entirety. I think this is the first attempt, at least in Japan, to specifically shed light on the issue of families of Hansen’s disease patients, to conduct interviews with a sufficient number of people, and to describe the life story of each participant in solid detail.

The families of Hansen’s disease patients are not just people who are only ‘related persons’ to the individuals afflicted with Hansen’s disease; they are the ‘directly involved persons’ and therefore verbalizing their experiences is of great significance. Hansen’s disease patients have gone through various experiences – including internment in sanatoriums away from their hometowns, life in long-term isolation, and strained, twisted or broken relationships with their family members – but if we look at the other side of the coin, their families have also experienced separation from disease-afflicted family members, discrimination and exclusion in social relationships, and strained, twisted or broken relationships. However, when disease-afflicted individuals were sent to sanatoriums and started living isolated lives in faraway places, it was not easy for them to see the situation with which their family members were confronted. Autobiographical records of former Hansen’s disease patients often contain some depictions of their families in their hometowns. Family members are often portrayed as figures who detest the patients, exclude them and try to sever the connections with them, and this matches the scream of pain as a Hansen’s disease patient who has been rejected even by his or her own family back home.

Correspondingly, the recollections of family members of Hansen’s disease patients contained in this book reveal the agony and repentance that they felt for treating their sick family members coldly or with harsh words, not visiting them at the sanatoriums often enough, being unable to feel excited about their temporary return from the sanatoriums and pretending that they did not exist. By listening to the families of Hansen’s disease patients talking about their own stories of struggle, rather than just to former patients talking about their families as part of their stories of pain, we should be able to deepen our understanding of what caused this situation and the story behind it. Based on the stories told by the families of patients, I provide my own analysis on this question in the conclusion at the end of this book (Deprivation of Relationships and Outlook on Restoration – Analysis of the Narratives).

Diversity of experiences

The twelve life stories contained in this book focus on the interviewees’ experiences as families of Hansen’s disease patients but they also include many segments that do not squarely fall within this ambit. For example, Harumi Oku (Episode 1: Restored Memories) provides rich details about life and culture in Amami Ōshima, where she lived from the age of eight, and Chikara Hayashi (Episode 7: Son of a ‘Leper’) provides a great deal of description concerning the wartime state of his junior high school (of the former schooling system) and his experiences in the military at the end of the war and in Dōwa education (liberation education) movements in Fukuoka Prefecture, which he led and implemented as a teacher after demobilization. Similarly, in the case of Gwangnam Hwang (Episode 10: Growing up without Knowing Parents), along with his experiences of having family members with Hansen’s disease, his experiences as a Korean living in Japan comprise a large part of the story as he vividly portrays ethnic education and anti-discrimination struggle scenes in Hyōgo Prefecture from the 1960s to the 1970s.

When readers come across these stories, they may question why there is so much detail on matters not directly related to the issue of families of Hansen’s disease patients. However, my view is that if we value the uniqueness of the life of each storyteller (that is, that no two people are the same) and the diversity of families of Hansen’s disease patients (that is, that everyone is different), then it is probably unwise to omit those elements. I believe that readers will realize, as they read the life stories, that it is incorrect to think that such details are irrelevant and that they are, in fact, an integral part of the families’ life stories.

We can see from each story that experiences as families of Hansen’s disease patients are diverse. Ryoko Miyazato (Episode 2: Thanking Parents for Giving Birth to Me) and Shigeo Maeda (Episode 11: Proudly Born in Wakōen) were born to parents who lived and became couples in the sanatorium, while other interviewees who were born to parents with Hansen’s disease were born while their parents were living outside the sanatorium. Nobuko Harada (Episode 4: I Should Have Been Nicer to My Father) grew up wanting to go to the school inside the sanatorium because she made friends with resident children and was treated well by adults whenever she went to visit her father. Hideko Nakamura, the older of the two sisters in Episode 5 (Never Ever Moving Away), talked about her determination to continue to protect her parents’ home despite the neighbors’ aversion, whereas her younger sister, Naoko Murata, spoke of the suffering she endured for hiding the truth about her brother in a sanatorium from her husband. Sachiko Suzuki (Episode 6: Living in the Sanatorium despite Being a Non-patient) was sent to live in the same sanatorium as her father, even though she was not sick. Koichi Akatsuka (Episode 8: At the Forefront of the Bereaved Families’ Lawsuit) spoke about the anguish caused by his father’s internment in the sanatorium near his house and his fight in the government liability trial. Toshihiko Umezawa (Episode 9: Forced out of High School) talked about the frustration of being subjected to employment discrimination on the grounds that his family members had Hansen’s disease. J (Episode 12: Unfulfilled Aspirations) faced education and marriage discrimination due to a combination of having family members with Hansen’s disease and being from a buraku (outcast hamlet). It should be obvious to readers, by reading the life stories of the protagonists of this book, that the life of each family member of a Hansen’s disease patient is different. Also, readers should be able to draw their own insights from the twelve life stories as each story is presented in depth, allowing for a variety of interpretations. There may well be different readings to my analysis at the end of this book.

Particulars of the interviews

It took more than ten years from when I began my interviews with families of Hansen’s disease patients to the publication of this book.

In September 2004 I met families of Hansen’s disease patients for the first time while I was studying in a doctoral program. I was recruited to participate, as a research assistant, in a survey on the Verification Committee Concerning the Hansen’s Disease Problem, a body set up to verify damage caused by the government’s policy on Hansen’s disease following the Kumamoto District Court’s decision in favor of the plaintiffs in the Government Liability Lawsuit on the Unconstitutionality of the Leprosy Prevention Law in May 2001. At the time, my supervisor, Yasunori Fukuoka, was a Saitama University professor and an investigative member of the Verification Committee, which was in charge of the overall facilitation of the survey on the reality of damage. While large-scale interviews were being conducted with sanatorium residents and former residents – in the end, the number of participants rose to 758 residents from national sanatoriums, nine residents from private sanatoriums and 69 former sanatorium residents – it was decided that interviews with residents’ families would be added; I was given an offer to take charge of that part. A total of five families took part in the interviews. I went with Mr Fukuoka to the visitor accommodation of the national Hansen’s disease sanatorium Kikuchi Keifūen in Kumamoto, which was designated as the interview venue. I was introduced to Ryoko Miyazato (Episode 2), K (Episode 3), Nobuko Harada (Episode 4), Toshihiko Umezawa (Episode 9) and J (Episode 12). We interviewed each person, one by one (rather than a group format), spending three to four hours hearing each life story.

I could say the impact these people made on me that day was what really drew me into the study of the issue of Hansen’s disease. K (Episode 3: Painful Consciousness of Hating My Own Father) began talking enthusiastically as soon as she sat at the table set up for the interview, without waiting for the questions. She talked, with a powerful burst of anger, as if she was letting out long-suppressed emotions, about her experience of visiting her father at Keifūen for the first time when she was twenty-four after discovering that he was actually alive after growing up being told he was dead. Until then, I had never conducted interviews on the Hansen’s disease issue because my main research topic was the issue of discrimination against buraku. The remaining four interviews were the same; I was overwhelmed and lost for words by the hideousness of the experiences and the level of intensity with which the interviewees spoke, and the best I could do was to just listen as they vented their anger and sadness in response to Mr Fukuoka’s questions.

Over the following ten years, Mr Fukuoka and I continued to visit sanatoriums across the country and interviewed residents, former residents and their families. As at the time of writing, we have interviewed more than 300 people. However, during those ten years, the opportunities to meet new families of Hansen’s disease patients were very scarce, and even more so when we looked for people who were willing to dedicate a block of time to tell us their life stories and give us permission to publish them in book form. The life storytellers introduced in this book were among the few people who allowed us to do so.

We were able to be actively involved with Rengesō no Kai (Association of Families and Bereaved Families of Hansen’s Disease Patients), the first and only organization for families of Hansen’s disease patients in Japan formed during the course of the Government Liability Lawsuit, since the interviewees we met through the aforementioned Verification Committee activities were members. We have attended the general meeting of Rengesō no Kai held at the end of January every year whenever possible and regularly take part in the family breakout sessions of the Hansen’s Disease Association for the People’s national social conference held annually in May. We have also consistently participated in and listened to the speeches of the representatives of bereaved families at the ceremony for the Day to Restore Honor and Commemorate the Victims of the Leprosy Prevention Law, the annual event hosted by the Ministry of Health, Labour and Welfare that began in June 2009. The members of Rengesō no Kai are scattered all over the country and have leveraged these events, which take place several times a year, to build relationships with each other, and we have been given the privilege to join them. People from the association readily welcomed us and this was how the interviews with Rengesō no Kai’s chairman Koichi Akatsuka (Episode 8) and its regular members Harumi Oku (Episode 1) and Hideko Nakamura and Naoko Murata (Episode 5) became possible.

Gwangnam Hwang (Episode 10) is also a regular member of Rengesō no Kai. Our first encounter with him was at the second national social conference of the Hansen’s Disease Association for the People held in Toyama City in 2006. He initially declined our request for an interview but decided he could trust us after hearing my family survey report of the Verification Committee, which I presented at day two of the breakout session. We were able to interview not only Gwangnam but also his spouse, Donja Chung; his father, who had by then been readmitted to Nagashima Aiseien in Okayama Prefecture; and his sister, who is a former sanatorium resident.

It was at the same (second) conference of the Hansen’s Disease Association for the People in 2006 that we met Chikara Hayashi (Episode 7), who was also listening to my Verification Committee presentation, which is how we had the chance to make his acquaintance. We regularly saw him at Hansen’s disease issues-related gatherings after that. He had already publicly announced as far back as the 1970s that his father had Hansen’s disease and had written many books by then, but he gladly accepted our request for an interview.

In contrast to the people mentioned above, Sachiko Suzuki (Episode 6) seldom appeared at Rengesō no Kai’s meetings or Hansen’s disease-related gatherings. We were introduced to Sachiko by Ryoko Miyazato at a meeting in 2005 that she happened to attend, and we were fortunate to obtain her agreement on the spot for an interview and to hear her stories at her home in the Kanto region.

We also came in contact with some research participants by pure chance while we were on a fieldwork trip traveling across the country between Hansen’s disease sanatoriums. In the summer of 2010, as we were heading back to our accommodation in Naze City after an interview with residents at Amami Wakōen, one interview participant kindly called his ‘favorite taxi driver’ for us. When we told the driver that we were traveling around Hansen’s disease sanatoriums to carry out interviews with residents, the driver said, ‘I was born in Wakōen.’ That driver is Shigeo Maeda (Episode 11). Our trip was backed by Harumi Oku and Koichi Akatsuka, who were based in Amami Ōshima, and we asked Harumi, who was an old friend of his, to help us set up an interview with him at a later date.

There was one more interviewee whose life story was going to be part of this book, who I am going to call the ‘other person’ hereinafter. We happened to be at the visitor accommodation at the same time when we visited Hoshizuka Keiaien in Kagoshima Prefecture early in the summer of 2013. She was staying at the sanatorium overnight to see her mother, who was housed there. She made some time to tell us her life story at the dining hall of the visitor accommodation and we learned that she grew up in Keiaien’s childcare institution from soon after birth to when she was fifteen years of age. She initially gave us permission to include her story in this book but, unfortunately, we had to abandon the plan due to unforeseen circumstance.

With the people we interviewed as part of the family survey of the Verification Committee in 2004, we conducted a round of supplementary interviews seven years later. K (Episode 3) told us about the change in her mental state that had occurred since our last interview. Nobuko Harada (Episode 4) spoke in 2004 about the hardship she faced due to having a family member with Hansen’s disease, but at the supplementary interview seven years later she told us about her interaction with residents when she visited the sanatorium as a child. We took a trip to Shiiba Village in Miyazaki Prefecture, with Toshihiko Umezawa (Episode 9) and Ryoko Miyazato (Episode 2) seven years later. During the course of the trip, Toshihiko Umezawa told us about his thoughts and feelings, which he could not share with us in 2004, and updated us with subsequent developments of his situation.

In writing up the life stories of the five people from the Verification Committee’s family survey, as a reference I used the interview case studies from the ‘Survey on the families’ section in the Survey Report of the Reality of Damage Concerning Hansen’s Disease Problem, a separate volume appended to the Verification Committee Concerning Hansen’s Disease Problem Final Report. This is available for public access on the Ministry of Health, Labour and Welfare website for readers who are interested in looking at the original records of the interviews.

In regards to the twelve life stories contained in this book, I had the manuscripts checked by the interviewees themselves prior to publication in accordance with my own interview research procedures. This provided opportunities to enrich the life stories even more because it often naturally prompted supplementary interviews. I was also able to have errors in transcription and misunderstandings that occurred during the manuscript preparation corrected. In addition, I could discuss privacy-related matters, including handling of names of places and persons that appear in the manuscript.

Who we could hear from, who we could not hear from

At the beginning, I described the common attribute among the storytellers in this book – they all have one or more family members (parents or older siblings) with Hansen’s disease but have not developed the disease themselves. In other words, they are a ‘child’ or ‘younger brother or sister’ of Hansen’s disease patients. I understand that the expression ‘families of Hansen’s disease patients’ usually suggests a much wider meaning, so let me explain the reason for this limitation.

We could not meet any ‘father or mother’ or ‘older brother or sister’ during our decade-long research. The fact that the average age of Hansen’s disease sanatorium residents in 2015 was currently eighty-four implies that most fathers/mothers and older brothers/ sisters of the older generation of Hansen’s disease patients may have already passed away. Opportunities to listen to their experiences as told in their own words have been lost forever, or at least it is getting close to that.

We have met several spouses over the decade, most of whom were wives, meaning they were female. All the wives we met fell under one of the following cases: (1) cases where a woman was already married before an internment took place and she was admitted to the same sanatorium as her Hansen’s disease-afflicted husband, even though she did not have the disease herself, or (2) cases where a woman married a resident while working in a Hansen’s disease sanatorium as a nurse or in another job and built a family outside the sanatorium where she spent her married life, or (3) cases where a woman met and married her husband after he had been discharged from the sanatorium and discovered later that he was a former Hansen’s disease patient. This categorization is helpful in highlighting the group of people we were unable to meet – those women who divorced after their husbands’ development of Hansen’s disease and internment in a sanatorium. We have not met a single woman in this circumstance despite the fact that this is presumably the most common case. It should be mentioned here that while a number of interview case studies with spouses have already been published (see ‘Further Reading’ at the end of this book), I did not include them in this book because their experiences are significantly different to those of a ‘child’ or ‘younger brother or sister’ who were already related to disease-afflicted individuals at birth.

We have also met and conducted interviews with patients’ nephews or nieces or other relatives but I did not include them in this book either as it would be difficult to discuss them together with a child or younger brother or sister.

The majority of families of Hansen’s disease patients we have met over the past decade were patients’ children but among them were certain categories of people we found particularly hard to meet. One group was children who grew up in sanatorium-affiliated childcare institutions. We met only three people who were born to parents with Hansen’s disease and lived and grew up in a sanatorium-affiliated childcare institution over a long period of time. Among the three, there was only one, the ‘other person’ mentioned earlier, with whom we could have a detailed interview. Our fieldwork was primarily carried out around the movements of Hansen’s disease patients themselves and it may be that this approach is not optimal for meeting this specific category of people. Harumi Oku (Episode 1) and Ryoko Miyazato (Episode 2) spent three-and-a-half years during early childhood and six months during adolescence respectively in sanatorium-affiliated childcare institutions.

The second category is children who grew up in the boys’ or girls’ quarters inside sanatoriums. Some children of patients were sent to and grew up in a sanatorium with their parents despite not having the disease themselves and returned to society when they were old enough. So far, we have met two people in this situation, one of them being Sachiko Suzuki (Episode 6). We have heard that some of them married residents and are still staying in sanatoriums today, without re-entering society. However, we have been unable to meet anyone in this situation yet.

The third category is children of non-residents. ‘Non-residents’ refers to people who have developed Hansen’s disease but have never been admitted to a sanatorium. Over the past decade, we have met only one child of a non-resident, whose record of interview has previously been published (see ‘Further Reading’ at the end of this book). Again, I did not include it in this book as his experiences differed substantially from the storytellers who were separated from their parents or siblings for a long period of time, and I decided that it was difficult to bring them together on the same discussion table.

The forth category is children who were born after their parents were discharged and began living among the general public. We have conducted many interviews with former residents and some participants talked about their children who were born after their discharge (see ‘Further Reading’ for a published case study). It should be noted that we were unable to interview the ‘children’ themselves.

The last category is unborn children who were forcibly aborted in the sanatorium. Many of these unborn children were the ‘children’ of resident couples who met inside a sanatorium. It is impossible to listen to what these ‘children’ would have to say. As mentioned earlier, this book includes stories of children whose parents were both sanatorium residents – like these unborn children – but whose births were a miracle. Ryoko Miyazato (Episode 2) was able to come into this world because her father and pregnant mother escaped from the sanatorium. In Shigeo Maeda’s case (Episode 11), his mother was able to give birth to him because she became pregnant during the period when residents in Amami Wakōen were not subjected to forcible abortion due to the Catholic Church’s anti-abortion stance. Behind the families of Hansen’s disease patients whom we were able to interview are a large number of unborn children who have no voice.

Readers’ role in protection of privacy

I would like to make a note on the names of the interviewees and the issue of privacy. The decision on handling names was made in consultation with the interviewees themselves. They are roughly divided into the following three groups: (1) people who used their real name or a name equivalent to the real name, (2) people who used an initial to retain anonymity and (3) people who used a pseudonym for anonymity. ‘A name equivalent to the real name’ here includes using a maiden name or adopting the surname of the parent(s) who had Hansen’s disease. For those who used a pseudonym, this is indicated at the beginning of each life story when the interviewee is introduced.

Nevertheless, given the level of detail and the depth of these life stories, which highlight the uniqueness of every storyteller’s life journey, people close to the interviewees would probably be able to identify to whom the story belongs even if I try to protect anonymity with an initial or a pseudonym. However, if I removed every description that characterizes the particular individual in an effort to eliminate any hint that may suggest the identity of the interviewee, no content would be left in the life stories. In this sense, we can say that any story told at length by an affected party is private information as a whole.

The interviewees in this book, particularly those who requested