By Kathryn M. Tanaka, Associate Professor at the University of Hyogo

The Light of Promin by Yoshida Noboru from Studio Ghibli. In the collection of the National Hansen’s Disease Museum, Tokyo, Japan. Image Used with Permission. 

This article is about Mononoke-hime (Princess Mononoke), a 1997 film directed by one of Japan’s great storytellers and the founder of Studio Ghibli, Miyazaki Hayao (1941-).¹ But this is also an article about stories shared between Miyazaki and Sagawa Osamu (1931-2018), and how those stories inform Mononoke-hime. Some of these stories were told by Sagawa when Miyazaki visited Tama Zenshō-en, a former quarantine institution for the treatment of Hansen’s disease (as leprosy is less pejoratively called) on the outskirts of Tokyo. Miyazaki was working on Mononoke-hime during his first visit to Tama Zenshō-en in the mid-1990s. At the time, some survivors of the illness were celebrating the repeal of the Leprosy Prevention Law (Rai yobō hō), legislation that had subjected some people diagnosed with Hansen’s disease to involuntary lifetime quarantine. It had also permitted forced medical procedures, including involuntary eugenic surgeries such as vasectomies and abortions on people diagnosed with Hansen’s disease. Although the law was unevenly applied, it still had a great impact on the human rights of survivors, who navigated not only their physical disease but also the social, medical, and legal repercussions of this law. 

Sagawa Osamu (Kim Sangkweon) was one of the residents who spoke to the media after the repeal of the law. He was born in Korea and relocated to Tokyo with his mother when he was very young. At the age of 14, he was diagnosed with Hansen’s disease and entered Japan’s system of national sanatoria in 1945. He moved between two institutions before he arrived at Zenshō-en in 1964, where he spent the remainder of his life.² He served as the Residents’ Association president and on the steering committee of a museum dedicated to the history of Hansen’s disease and residents’ experiences.³ He worked to raise awareness about Hansen’s disease while sharing his own Korean heritage.⁴ He died in 2018, and tributes noted his role as a kataribe, or storyteller/oral historian, at Zenshō-en. He met museum visitors, tour groups, people like me–and eventually Miyazaki Hayao. He told us all stories of Hansen’s disease and his own experiences. This act of sharing influenced the way in which the story of Hansen’s disease is woven into Mononoke-hime. 

Before Dr. Guy H. Faget (1891-1947) published his findings that the sulfone drug Promin cured Hansen’s disease in 1943, palliative care in Japan was provided by a network of public and private institutions. The 1931 Leprosy Prevention Law allowed for more frequent institutionalization of patients. At the same time, quarantine measures were unevenly applied, and strict lifetime quarantine was never the only approach to the disease, although this approach received the most publicity.⁵ In the 1930s, the illness was the target of intense media coverage, health campaigns, and public awareness initiatives, which likely had the effect of increasing stigma. This was despite the fact that the bacilli that causes Hansen’s disease is relatively weak and not highly contagious.  The press debated not only patient care and quarantine, but also associated the body of the sufferer with perceived threats to social order and marked them as less-than-fully-human.⁶ This stigma is what the kataribe try to combat by sharing their stories. 

Dr. Ishida Morizō (1901-1996) first synthesized Promin in Japan in 1946, but authorities upheld the 1931 law in 1953. Although the cure of patients meant an increasingly fluid system of institutionalization that supported the reintegration of some survivors into society, the law remained a symbol of discrimination until its abolition in 1996. Since 1996, the Japanese government has faced two lawsuits, one for violating the human rights of survivors (2001); and a second for the violation of the rights of families of survivors (2019).  

Released as the first lawsuit was launched, Mononoke-hime (1997) is an animated film set in a fantasy version of the late Muromachi period (1336-1573 CE) that depicts the disruption of the relationships between humans, animals, and the environment. Lady Eboshi reigns in Iron Town, where Hansen’s disease sufferers and former sex workers have found acceptance and employment in Eboshi’s ironworks. The ironworks are built and fuelled through the destruction of the natural world around it. San, the titular Mononoke-hime, is a human raised by wolves who identifies strongly with the spirits of nature that Eboshi destroys. Thrown into the tension between the iron works and the natural world is a prince, Ashitaka, who has left his community to seek a cure after being scarred with a curse from a boar god made monstrous by Eboshi’s weaponry. The film creates a clear parallel between the hero Ashitaka, marked by the boar’s curse, and the Hansen’s disease sufferers, marked by the curse of their illness. The film culminates in a battle between a samurai clan trying to take over the ironworks, the boar clan, Eboshi’s forces, and the Forest Spirit-turned destructive nightwalker. 

Attention has been focused on the message the film contains about tensions between industrialization and nature, or how the film is expressive of ecological anxiety, as this is a theme across Miyazaki’s oeuvre.⁷ But the film also foregrounds the stories of marginal communities. The inclusion of stigmatized women and sufferers of Hansen’s disease has been read as humanizing or redeeming these figures, in particular Lady Eboshi, who is the villain of the film.⁸ We see her humanity when Osa, the leader of the sufferers of Hansen’s disease in the film, stops Ashitaka’s attack on her; from his bed on the floor, Osa intervenes and pleads that she is the only one who has washed, bandaged, and provided for them: “She is the only one who has treated us as human.”⁹ This scene complicates Lady Eboshi’s character, but Eujung Kim and Michelle Jarman argue the narrative in Mononoke-hime is still one of exclusion, and Eboshi’s vision of modernity is built on marginalized and exploited social groups under the guise of benevolence and care.¹⁰

Amongst the workers themselves, however, the film shares a different vision of benevolence and care: Miyazaki depicts the mutual aid structuring communities on the margins of society. The 2020 novel coronavirus pandemic brought new attention to the ways in which people living on the margins mobilize to protect their communities, but mutual aid has always been a part of these communities. People on the margins create new communities and social relations that provide not only care and kinship but also access to resources.¹¹ In the Iron Works community, those who can work do so. The women smelt and shape the iron, and the Hansen’s disease sufferers assemble weapons. There is a communal garden where they grow food, and people provide care for those who are too sick or disabled to work. At the same time, seriously ill people such as Osa give voice to the will of the collective, providing wisdom and leadership. 

The scene in which Osa stops Ashitaka from striking Lady Eboshi also underscores connections between marginalized groups. Osa says that both he and Ashitaka are cursed, so he can understand and sympathize with Ashitaka.¹² This is further underscored in the scene where the workers flee as the forest spirit, corrupted into a monstrous nightwalker, destroys the factory. The women carry those who are unable to walk, and no one is left behind. In these scenes, the film makes clear the connections between those on the margins of society and an ethics of mutual aid and community care they share. This hints at a history of alternative systems of community care for Hansen’s disease sufferers, systems that have been elided in contemporary histories of Hansen’s disease that center the sanatorium.¹³

The press widely reported on a 2016 symposium wherein Miyazaki confirmed the internet rumor that Mononoke-hime in fact depicted sufferers. In the same speech, however, Miyazaki also stated that the people in Lady Eboshi’s world were also inspired by ethnic groups in northern Japan as well as workers who came from the Korean peninsula, where iron was smelted before Japan.¹⁴ People indigenous to northern Japan and Koreans in Japan have a long history of discrimination, and ethnic Koreans who were diagnosed with Hansen’s disease, such as Sagawa, were stigmatized both for their ethnicity and for their illness. The acknowledgement from Miyazaki that there is also a debt to ethnic Koreans in particular in the film hints at other voices from the margins. 

Storytelling that refuses to erase minority perspectives, and insists on their visibility and place in the community, is a first step toward transforming historical discourse and restoring silenced voices.¹⁵ Miyazaki himself sees the important message in Mononoke-hime being the stories of people other than samurai and peasants, told as proof that they also were alive and part of history.¹⁶ By showing sufferers within communities and demonstrating segregation was not the only story of Hansen’s disease in Japan, Miyazaki subtly questions practices of social exclusion. He does this in his own lived example, as well. Together with Sagawa and members of the Residents’ Association, Miyazaki spearheaded efforts to preserve buildings and the history of Zenshō-en. He has also donated time, effort, and money to preserve trees in the sanatorium as a “Forest of Human Rights,” a forest with deep significance: after World War Two, survivors planted cherry trees in the hopes that families would come into the institution to enjoy the blossoms. Miyazaki also supported the establishment of a daycare facility on the grounds so survivors—who now number less than 150 and whose average age is near 90—have children around them after being denied families.¹⁷ He held public screenings of his films at the institution and welcomed tours of survivors to Studio Ghibli.¹⁸ His actions as well as his stories become an impetus for change. 

During a 2019 symposium honoring Sagawa and his legacy, Miyazaki presented Sagawa’s wife, Sachiko, with a tribute painting. Conceptualized by Miyazaki and Studio Ghibli artist Yoshida Noboru and painted by Yoshida, the work is entitled Puromin no hikari (“The Light of Promin”). Miyazaki shared that Sagawa told him the advent of Promin was like a piercing beam of light that radiated from the sanatorium back to his hometown, reconnecting him with his family.¹⁹ The image is Sagawa’s hands cupping a kernel of light that radiates out, a path of light directly connecting the hands in the darkness to an illuminated village—the hometowns of those who have been subject to quarantine.²⁰ Sagawa Sachiko donated the piece to the National Hansen’s Disease Museum Sagawa helped create.  

I would argue the painting depicts not only the light of Promin, but also the light of storytelling. Stories should not serve those in power and single narratives, because stories become collective histories. They should not erase or silence different races, ethnicities, or stigmatized bodies when those voices also have stories. Stories serve to emphasize that people on the margins have always existed and their stories are part of larger, complicated, messy historical narratives. Mass media, Mononoke-hime, the scrolls, Sagawa, and Miyazaki remind us that stories should be tapestry, woven from multiple threads to create a rich history. Sagawa and Miyazaki are both storytellers, whose experiences and narratives weave together, making new sense of the past, subtly questioning dominant stories told today in media and history books. One-sided storytelling risks simplification of a history that might not have existed and gives weight to narratives of exclusion and segregation. Miyazaki and Sagawa highlight that for many marginalized people, stories of inclusion have still been stories of exploitation and marginalization, but they are also stories of mutual aid and shared communities. Finally, when providing new insight into the past, Sagawa and Miyazaki remind us storytelling is a way to heal trauma and create narratives and histories that reflect everyone’s stories and perspectives. 

Mononoke-hime is about the high costs of a world out of balance—when nature is destroyed by industrialization—but also about the way in which society cares for those at the margins. Perhaps an overarching message in Mononoke-hime and The Light of Promin is the power of the story. Stories connect us and shape how we view the world and interact with others. We can see it in the painting: without light that connects us, darkness still surrounds us. Rather than let stories from marginalized people disappear into darkness as memories fade, storytellers like Sagawa Osamu and Miyazaki Hayao remind us it is important to bring everyone’s stories into the light and weave their narratives into our shared history.  When stories pass from the individual into the collective, they become our histories, and it becomes our collective duty to preserve the richness and refuse to let single narratives dominate. 

Kathryn M. Tanaka, associate professor at the University of Hyogo, is a Japanese literary scholar and big fan of Studio Ghibli and yōkai who works on the intersections of medicine, literature, and culture. Her work focuses primarily on Hansen’s disease and modern Japanese literature in the early twentieth century, in particular writing by women and children.  She has published articles about Hansen’s disease and literature in Japan, and some translations. Currently, she is completing a book manuscript on gender and Hansen’s disease but has a tandem project on sociocultural responses to the COVID-19 pandemic. She is also an editor for Historifans. Her twitter handle is @KathrynTanaka18 and much of her work can be found at https://linktr.ee/kathryn.tanaka.

Works Cited

1.  Miyazaki, Hayao. Mononoke Hime [Princess Mononoke], Studio Ghibli, 1997.  ↩︎
2.  I use the name Sagawa here as that is most common in Japanese media, but it is a colonial Japanese name. For more on Sagawa, his life, and his Korean heritage in his own words, see Fukuoka, Yasunori and Kurosaka, Ai, “Nagai zainichi kurashi wo hansenbyō rikanja to shite ikite: Kin-shō-ken-san kikitori “chōsa nōto”” [A Long Life Lived as a Sufferer of Hansen’s Disease and a Zainichi Korean—An Interview with Kim Sangkweon (Research Notes)], Nihon Ajia Kenkyū—Saitama Daigaku daigakuin jinbun shakai kagaku kenkyū hakase katei kōki katei (gakusai-kei) kiyō 17 (March 2020): 21-48. http://doi.org/10.24561/00018961 ↩︎
3.  This museum was established as the Prince Takamatsu Memorial Hansen’s Disease Muse as the National Hansen’s Disease Museum in April 2007. ↩︎
4.  Kim, Kwiboon, “Kikō—Hansen-byō no goribu ‘shiryōkan’ sōsetsu e honsō— Kim Sangkweon-san wo shinobu” (Contribution—Remembering Kim Sangkweon, a storyteller of his experiences with Hansen’s disease who worked to establish the museum), Mindan Shinbun 7 March 2018. Available online: https://www.mindan.org/old/front/newsDetail6d3b.html ↩︎
5.  Burns, Susan, Kingdom of the Sick: A History of Leprosy and Japan, Honolulu: University of Hawai’i Press, 2019, and Hirokawa, Waka, Kindai Nihon no Hansen-byō Mondai to Chiiki Shakai [Modern Japan’s Hansen’s Disease Problem and Local Communities]. Osaka: Osaka daigaku shuppan-kai, 2010.  ↩︎
6.  Popular media sometimes described people suffering from Hansen’s disease in sensational terms such as “living corpses,” but some medical professionals were also less than sympathetic; one resident at Zenshō-en recalled hearing a doctor tell the famous author and resident at Zenshō-en Hōjō Tamio that “as person, you’re nothing.” See more in Tanaka, Kathryn M., “”They are not human”: Hansen’s disease and medical responses to Hōjō Tamio,” in Science, Technology, and Medicine in the Modern Japanese Empire. Ed. David G. Wittner and Philip C. Brown ,Oxon and New York: Routledge, 2016: 130-147.  ↩︎
7.  Morgan, Gwendolyn, “Creatures in Crisis: Apocalyptic Environmental Visions in Miyazaki’s Nausicaä of the Valley of the Wind and Princess Mononoke,” Resilience: A Journal of the Environmental Humanities, 2 (3) (Fall 2015), 172-183; Abbey, Kristen L., ““See with Eyes Unclouded”: Mononoke-hime as the Tragedy of Modernity,” Resilience: A Journal of the Environmental Humanities , 2(3) (Fall 2015), 113-119; Hall, Chris G., “Totoros, Boar Gods, and River Spirits: Nature Spirits as Intermediaries in the Animation of Hayao Miyazaki,” Resilience: A Journal of the Environmental Humanities , 2(3) (Fall 2015), 158-165; Thomas, Jolyon Baraka, “Shûkyô Asobi and Miyazaki Hayao’s Anime,” Nova Religion The Journal of Alternative and Emergent Religions 10 (3) (February 2007), 73-95 ↩︎
8.  McAndrews, Mary Beth, “The Complicated Power of Princess Mononoke’s Villain, Lady Eboshi,” Film School Rejects. 19 October 2019. Available online: https://filmschoolrejects.com/princess-mononoke-lady-eboshi-miyazaki/
   ↩︎
9.  Miyazaki, Hayao. Mononoke Hime [Princess Mononoke], Studio Ghibli, 1997, 40:47 ↩︎
10.  Kim, Eunjung and Jarman, Michelle, “Modernity’s Rescue Mission: Postcolonial Transactions of Disability and Sexuality,” Revue Candienne d’Études Cinématographiques 17(1), Special Issue on Film and Disability (Spring 2008), 52-68. ↩︎
11.  Arani, Alexia, “Mutual Aid and Its Ambivalences: Lessons from Sick and Disabled Trans and Queer People of Color,” Feminist Studies 46(3) 2020: 653-662.  Miyazaki, Hayao. Mononoke Hime [Princess Mononoke], Studio Ghibli, 1997, 40:50 ↩︎
12.  Miyazaki, Hayao. Mononoke Hime [Princess Mononoke], Studio Ghibli, 1997, 40:50 ↩︎
13.  For more on alternatives to forced quarantine and the history of Hansen’s disease in modern Japan, see Hirokawa Waka, “A colony or a sanatorium? A comparative history of segregation politics of Hansen’s disease in modern Japan,” in: Science, Technology, and Medicine in the Modern Japanese Empire. Ed. David G. Wittner and Philip C. Brown ,Oxon and New York: Routledge, 2016: 117-129. ↩︎
14.  Leprosy/Hansen’s Disease as Heritage of Humanity. Symposium. Tokyo, Nihon Zaidan Biru. 28 January 2016. See also Sasakawa kinen hokenryoku zaidan, Jinrui seikai kaigi Tokubetsu kōen kōenroku, “Zenshō-en de deatta koto (zenhen)” [Things I Met with at Tama Zensho-en (First Part)]. Tama  1133 (2016): 2-5.  ↩︎
15.  Trouillot, Michel Rolph, Silencing the Past: Power and the Production of History. Boston: Beacon Press, 1995.  ↩︎
16.  Hatachi, Kota, “Miyazaki Hayao kantoku ga nagashita namida no imi “Mononoke-hime” de kaita hansenbyō to no deai” (The meaning of the tears shed by Director Miyazaki Hayao and his encounter with Hansen’s disease as depicted in Mononoke Hime). Buzzfeed News. ↩︎
17.  Hatachi, Kota, “Miyazaki Hayao kantoku ga nagashita namida no imi “Mononoke-hime” de kaita hansenbyō to no deai” (The meaning of the tears shed by Director Miyazaki Hayao and his encounter with Hansen’s disease as depicted in Mononoke Hime). Buzzfeed News. 27 January 2019. Available online: https://www.buzzfeed.com/jp/kotahatachi/miyazaki-hansen ↩︎
18.  Leprosy/Hansen’s Disease as Heritage of Humanity. Symposium. Tokyo, Nihon Zaidan Biru. 28 January 2016. See also Sasakawa kinen hokenryoku zaidan, Jinrui seikai kaigi Tokubetsu kōengo, Taiwa kiroku (zenhen)” [World Meeting For Humanity, A Discussion After the Lecture (First Part)]. Tama  1135 (2016): 2-10.  ↩︎
19.  Hatachi. ↩︎
20.  Hatachi. ↩︎