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Abstract

A recent revisit of the history of leprosy in East and Southeast Asia led to the establishment of museums of Hansen’s disease. Given that the history of leprosy has been a touchy subject due to its social stigma and complicated colonial past, these museums become spaces for the curious to comprehend memories of the forgotten past. In this article, we investigate contradictory purposes of reappraising the heritage value of the history of leprosy for present needs. Museum exhibitions in three colonial leprosaria in Malaysia, South Korea, and Taiwan are examined, specifically focusing on three areas of interpretation: the medical past in a post-colonial present, the difficult life of former patients, and the unsettled present. In contrast with the traditional museum as a place for the repository of glorious national identity, museums of Hansen’s disease offer diverse pathways to new museum culture created by activists, museum visitors, and officials.

Keywords

difficult heritage Hansen’s disease heritage interpretation museum social movements

Introduction

Leprosy (also known as Hansen’s disease)¹ has a long history in Asia. Although the etiology of leprosy is different across countries, leprosy was not considered an unusual disease until the arrival of evangelical medicine and modern Western influence (Jung, 2013) in the late nineteenth and early twentieth centuries. The prevailing segregation policies shared among imperialist countries to forcibly quarantine leprosy-affected people for collective control and management envisaged the establishment of leprosaria in Asia, which intensified the fear of contagion and social stigma toward leprosy and its sufferers in the early twentieth century. Among tropical diseases in the history of “imperial tropical medicine” (Farley, 1991), leprosy was the only one that required severe quarantine as a public health measure under colonial legislation. Even after leprosy was proven to be curable in the 1950s (Kim, 2019), the term “leprosy” retained its fearful stigma due to society’s expectation for the disease (Waxler, 1981).

Historical research on leprosy was never popular beyond medical and healthcare domains, nor was it a conventional social topic other than in its connection with stigma (i.e. Burns, 2003; Gussow and Tracy, 1970). Discourses on the social history of leprosy in Asia only gained momentum when former Japanese Prime Minister Junichiro Koizumi apologized in 2001 to former leprosy patients for the Japanese government forcing them into isolation during the implementation of the Leprosy Prevention Law between 1931 and 1996. In addition to hundreds of publications in Japan, scholarly books and papers on the social history of leprosy in East and Southeast Asia began to be published from various perspectives, such as the oral histories of living leprosy-affected people (Chou and Ho, 2013; Loh, 2008), social movements (Por, 2020; Wang, 2020), and colonial policies of leprosy (Kim, 2021; Loh, 2009). Leprosy-related nongovernmental organizations (NGOs) also published books dedicated to the history of leprosy in their countries (Kuo, 2011; Phang and Wong, 2006; Sorokdo National Hospital, 2017). These revisits to the history of leprosy eventually led to the initiation of historic preservation movements. Among them, the establishment of museums of Hansen’s disease, especially those within leprosaria built under colonial regulations (hereafter colonial leprosaria), is critically important to connect the general public with the memory of leprosy. Yet, to date, heritage studies and museum studies have contributed little to exploring the evolution, complexity, and contentious nature of the efforts of these institutions to preserve and narrate the history of leprosy and leprosaria in Asia.

The establishment of colonial leprosaria aimed to fulfill the needs of colonial governments and were operated under the colonial governmental system. In addition to providing healthcare for leprosy-affected people, leprosaria were places to conduct massive medical experiments, practice cultural assimilation, and showcase the advancements of science and modernization in the colonies. Museums of Hansen’s disease have become an effective way for present and future generations to meet the crux of history, stigma, and culture that these museums offer. Pertaining to interpretations of the history of leprosy and colonial leprosaria, how a museum of Hansen’s disease illuminates the painful and stigmatized past without compromising the historical facts becomes a difficult, yet fundamental task in the heritage-making process.

This comparative research, focusing on colonial leprosaria, investigates museum exhibitions on the history of leprosy and leprosy-affected people in two specific ways. First, how the museum interpretation of a colonial leprosarium is subject to the complicated connection between the colonial past and the post-colonial present in the country where the museum of Hansen’s disease is located. Second, how the social history of leprosy-affected people is remembered, used, erased, and replaced under different forces in the contemporary era. Museums/exhibitions in three leprosaria are selected to unfold the discussion. They are the Sorokdo National Hospital Hansen’s Disease Museum in the Sorokdo Leprosarium in South Korea, the Path of Illness Exhibitions in the Losheng Sanatorium in Taiwan, and the Valley of Hope Story Gallery in the Sungai Buloh Leprosarium in Malaysia. Since 2005, transnational collaborations on historic preservation between Sungai Buloh Leprosarium and Losheng Sanatorium and on human rights lawsuits against Japan between Losheng Sanatorium and Sorokdo Leprosarium have received international attention for their patient-centered activism. In this article, three topics are examined across the three museums/exhibitions: interpreting the medical past in a post-colonial present, interpreting the difficult life of former patients, and interpreting the unsettled present. We examine commonalities and differences across the three cases, uncovering the competing, and even contradictory, purposes and practices of reappraising the heritage value of the history of leprosy.

Multiple site visits to the museums/exhibitions of Hansen’s disease in Malaysia, South Korea, and Taiwan were done by the authors between 2016 and 2020 to conduct semi-structured interviews with diverse actors, including curators, leprosy-affected residents, and officials. In addition to the investigation of relevant archives, substantial materials in this research are also derived from direct observation of exhibitions and the analysis of promotional materials, such as brochures, websites, and social media coverage, as well as of official reports. Exhibition text originally in Korean and Chinese are translated by the authors.

Difficult heritage in the making

Although scholars like Uzzell (1989) specify the importance of a museum or a site to honestly represent shameful events of the past, scholarly discussion of the “history that hurts” (Baker, 1988) was not a popular topic until the term “dissonant heritage” was coined by Tunbridge and Ashworth (1996). For the past two decades, their research has led to a growing interest in the historic preservation and interpretation of memories or sites with negative associations (Turtinen, 2000). Terms like negative heritage (Meskell, 2002; Ogino, 2000), ambivalent heritage (Chadha, 2006), difficult heritage (Logan and Reeves, 2008; Macdonald, 2009), and dark heritage (Thomas et al., 2019) emerged to refer to a past that is uncomfortable, undesired, painful, shameful, and conflictual. Samuels (2015) points out that these concepts similarly refer to heritage that is problematic for one reason or another and are often perceived as a component of “complex personal, social-political, or national identity politics” (p. 112). Among these terms referring to heritage in conflicted contexts, “difficult heritage” is least provocative and provides a larger umbrella for subjects and disciplines in heritage studies, memory studies, archeology, and ethnography. For that reason, we use that term in this study.

Difficult heritage, as opposed to the heritage that can be celebrated as national identity, often reveals “the destructive and cruel side of history” (Logan and Reeves, 2008: 1). Examples of memory and sites concerning Nazism and other extreme cases of atrocity, such as war, massacre, and genocide, have been widely discussed in this regard. Over the past decade, a significant amount of scholarly attention has been devoted to transnational disputes over difficult heritage on politically sensitive issues such as controversial interpretations of memories during the colonial period and World War II. In fact, the phenomenon of an Asian boom of difficult memories (Schumacher, 2015) led to a public remembering of pain and shame at the national, regional, and international levels that has been especially cognizant of complicated colonial and post-colonial history.

Apart from its initial purpose of remembering and commemorating the past, difficult heritage has become a powerful tool related to nationalism, either through a focus on victimization (Macdonald, 2015) or by facilitating colonial reconciliation and identity reinvention. In Asia, in particular, heritage politics plays an influential role in the remembrance and forgetting of the colonial past in order to reflect the post-colonial present. Although scholars argue that such negotiations over memory could be seen as potential turning points in the public realm to stimulate narratives about the significance of difficult pasts and provoke visitors to reflect while creating the “heritage effect,” that is, historic sites with splendor for commendation (Burström and Gelderblom, 2011; Carter, 2020; Macdonald, 2009; Maulsby, 2019), the interpretation of difficult heritage remains problematic and challenging.

The cases in this study exemplify such challenges as they reflect not only the past but varied relationships in today’s societies with the past; in this case, the colonial past. Different relationships of the countries of the case studies in this research with their colonial pasts predict how colonial medical measures in the history of leprosy will be depicted in the museums under study. For example, Korea uses antipathy toward its former colonizer, Japan, in the construction of national narratives to strengthen its national identity (Lee, 2019).² It further implements a “corrective remembering” approach, an attempt to correct the telling of the past for the interest of the present, in the case of Korea through erasing or silencing specific memories of the colonial past (Huang and Lee, 2019). In comparison, Taiwan, another former colony of Japan, develops a complicated attitude with less resistance toward its former colonizer (Abramson, 2004). Since the revision of the Cultural Preservation Act of 2005, the inscription of historic sites from the colonial period has significantly increased. The heritage legacy from colonial Japan has been shaped and reshaped from a dark past into a glorious contribution to the identity of Taiwan, to redefine the culture of Taiwan as multifaceted due to the impact of various historical periods, including that of the colonial (Yao, 2022). Malaysia, a former colony of the British Empire, established an independent state centered on the Malay culture in 1957, which marginalized other ethnic groups, including the Chinese majority. The neglect of non-Malay communities in the World Heritage Site of Melaka³ evidenced a controversial debate over cultural reinvention in museum displays (Worden, 2003). This illustrates how the past has been reinterpreted, including through erasure or silencing, in order to achieve social or political goals in the post-colonial present.

A colonial leprosarium, where former patients still live, encapsulates all these complexities and challenges, revealing a spectrum of difficult heritage with tangible and intangible aspects. In addition to the colonial and post-colonial entanglement, the history of leprosy is complicated with regard to issues such as social stigma, human rights violations, and human experiments in medicine, to name a few. While addressing the above issues (to differing degrees), museums of Hansen’s disease also play a role as a cultural resource for a disappearing minority to express their painful stories. The inclusion of former patients’ stories in the heritage-making of the history of leprosy thus can help manage the past among members of aggrieved groups in transitional societies (Lehrer, 2010), that is, leprosy-affected residents and their family members.

The fact that this difficult heritage includes the memories of living individuals, makes it an imperative that such experiences are respected. Therefore, Loh (2011) and Por (2020) explicitly denounce the exclusion of memories of former leprosy patients in the state and social activist heritage discourses in Singapore and Malaysia. Similarly, Burns (2016) relates the problematic process of constructing the public history of leprosy, as the exhibits at the National Museum of Hansen’s Disease in Tokyo conceal the dark side of patients’ testimonies. Uncritical exhibitions potentially trigger dissonance between and within groups. “What is displayed?” and “What messages are to be conveyed?” are critical in museum displays and when interpreting the history of leprosy.

The narrative of leprosy control

The territorial expansion of colonial powers to include the tropical world in Africa, Asia, and South America between the sixteenth and nineteenth centuries propelled a significant need to invest in healthcare for two major purposes: to protect the health of European functionaries, soldiers, traders, and managers, and to ensure the health of the indigenes who worked in mines and on plantations and shopped in towns (Chakrabarti, 2014; Worboys, 2000). Encounters with the unfamiliar people and cultures in the tropics intensified the myth of tropical diseases, which led to the emergence of imperial tropical medicine in the 1880s and early 1890s. Leprosy was one of these diseases; less fatal than some, yet perceived as fearsome to colonizer society due to the signs or symbols of body deformity representing it (Gussow and Tracy, 1970).

While the debate on the contagion and heredity of leprosy continued, leprosy became a concern in the colonial territories and a threat to public health in home countries. Leprosy, which was believed to have disappeared in Europe before the sixteenth century, once again became a public matter in the modern colonial period. The growing fear of “the dreadful revival of leprosy” (Mackenzie, 1889) in the West was transformed into competing schemes for eradicating leprosy in the tropics; schemes associated with racial othering and inferiority claims (Arnold, 1988). Terms like “non-whiteness disease” and “dark skin disease” elevated leprosy to “an imperial danger” (Wright, 1889) in social and constitutional domains rather than a purely individual medical matter (Gussow, 1989: 131). Nevertheless, segregation was neither legitimate nor necessary in Asia in the second half of the nineteenth century, although a few leprosy asylums and hospitals for the relief of leprosy-affected people, who voluntarily admitted to the facilities, were established by missionaries for philanthropic goals and by private traders and entrepreneurs for economic purposes.

The discovery of leprosy bacillus by Gerhard-Henrik Armauer Hansen in 1873 changed this, as he emphasized the disease’s contagious nature. When presenting at the First International Leprosy Congress in Berlin in 1897, he used the example of the isolated nursing homes for leprosy-affected patients in Norway, to suggest that isolation policy was the best means of preventing the spread of the disease. The notion of compulsory isolation of leprosy-affected people was reasserted at the Second International Leprosy Congress in Bergen in 1909. However, these segregation policies did not become policy for all people affected by leprosy until the Third International Leprosy Congress in 1923, which specifically advised the denial of entry for leprous foreigners to facilitate mobility and trading opportunities for colonial empires (Muir, 1937). In response to medical consensus on these international occasions, a fierce containment of leprosy and harsher resolutions gained legitimacy among major empires in the early twentieth century, leading to measures such as the Lepers Enactment implemented by the Federated Malay States in 1926, the Japan Leprosy Prevention Law in 1931, the Taiwan Leprosy Prevention Law in 1934, and the Joseon Leprosy Prevention Law in 1935. The promotion and establishment of modern leprosaria began to prevail among colonial governments.

To Western empires, the establishment of leprosaria was a consequence of the fear of the disease under notions of cultural and political superiority, and to the Japanese empire, a way to showcase the modern and scientific advancements of colonial powers. When the segregation policy was mentioned, the successful model of nursing institutions in Norway provided a prototype of segregation measures as a shelter for leprosy-affected people and as a laboratory for medical practice and research.

A humanitarian form of isolation such as “sanatarium or agricultural colony” was officially mentioned in the resolution of the Third International Leprosy Congress in Strasbourg in 1923, following a discussion on the living conditions at leprosaria during the Calcutta Leprosy Conference in 1920 (Muir, 1937). Although legislation on leprosy differed in each country, there were certain characteristics common to all. To buffer against the suggested contagion of leprosy, leprosaria were isolated from the general public in a remote location or on a secluded island. In addition, the sick and healthy (i.e. staff) lived in separate areas, revealing the fear of leprosy and the strict rules on collective management of the disease even inside the leprosaria. While respecting the context of these restrictions, there were also goals of community building. To “keep leprosy-affected people happy and healthy while they receive medical treatment” (Ross, 1929), the three leprosaria in this research were built as self-contained quasi-societies containing religious buildings, living quarters, gardens, farms, medical facilities, and administrative offices. The common configuration of leprosaria not only reflected the everyday needs of leprosy-affected people but also revealed the information-sharing system among medical elites and colonial officials in the early twentieth century.

After segregation laws in the countries of this research were weakened and eventually abolished in the 1960s, for example, in Taiwan in 1962, South Korea in 1963, and Malaysia in 1969, cured patients were encouraged to leave the leprosaria. However, most chose to remain to avoid confronting severe social stigma and discrimination outside their communities. As a result, leprosy-affected people and their history were ignored and marginalized on many levels. As the dialogue around historic preservation has only recently broadened to embrace narratives that are culturally diverse and include the socially marginalized (Harrison, 2013; Jokilehto, 2006), the history of leprosy was never a priority of post-colonial governments.

Colonial leprosaria and the their museums/exhibitions

Since 2001, bottom–up movements to preserve the history of leprosy in Asia led to the involvement of different forces in revisiting this forgotten history. Individual leprosarium developed unique processes to prevent the demolition of their site, to build community and national coherence through their interpretation of the history of leprosy, or to emphasize civil society through social movements. Given that the three leprosaria in this research retain living places for leprosy-affected residents, the protection of leprosy-affected residents from being disturbed is the major concern when bringing the visitor close to the painful past. In-house museums became the forefront for the curious to comprehend the forgotten past. A brief introduction of each leprosarium and its museum/exhibition are as follows.

Valley of Hope—Story Gallery, Malaysia

The Sungai Buloh Leprosarium was established in a lush valley 24 km north of Kuala Lumpur in 1930 after Dr Ernest Aston Otho Travers, the former State Surgeon of Selangor (1891-1897) in the Straits Settlements of Malaya, put forward his views to provide a more humane condition for leprosy patients in 1923. The self-supporting leprosarium was planned according to the Garden City ideology⁴ (Lim, 2012). During its peak in 1958, 2400 inmates including Chinese, Indians, Malays, and others lived in a total area of 226.6 ha. The Research Unit was established in 1951 to conduct clinical research on leprosy. Due to the launch of the National Leprosy Control Program, the policy of forced segregation of leprosy patients was abolished in 1969. After that, the physical environment of the leprosarium remained intact until the decision to redevelop 16 ha of land in the eastern section of Sungai Buloh into a medical campus. The news about the demolition in July 2007 alerted preservation scholars and advocates, among others, to the significance of the leprosy settlement and facilitated a transnational social movement on historic preservation with the Losheng Sanatorium in Taiwan. Eventually, the Sungai Buloh Leprosarium was designated as a national heritage site by the Department of National Heritage in 2016 and submitted for the UNESCO World Heritage Tentative List in 2019.⁵

In 2016, the Patients Council and the activist group, Care & Share Circle, launched the “You Are The Hero” project to establish the Valley of Hope—Story Gallery (hereafter Sungai Buloh Story Gallery) containing oral histories from former patients. With the support of crowdfunding and public donations, the Sungai Buloh Story Gallery was officially opened in 2018. The two-story gallery of approximately 80 sq m was built as a light wood structure on the front part of the Community Hall, the meeting place for leprosy-affected residents in general and the Patient Council. The exhibition with Chinese, Malay, and English translations reveals the cultural complexity of the leprosarium both in the past and the present.

The exhibition is thematically divided into four sections and an auditorium. Three sections, including the chronology of events, a photo exhibition, and occupations of leprosy-affected residents, are located on the ground level. The fourth section, the timeline of leprosy-affected residents, is on the second level, along with the auditorium. In the Chronology, a large amount of text and number of images are dedicated to the contributions of medical experts to the research and treatment of leprosy during both the British colonial and independence periods. In addition, a rich collection of objects and photos in the Occupations section support explicit explanations of the contribution of leprosy-affected residents to the self-supporting community. These two major sections plot out the leprosarium as “the largest and most well-equipped leprosy asylum in the British Empire” (quote from the exhibition).

The Timeline of an Inmate’s Life between 1930 and 2017 exemplifies the story of a female inmate who was admitted to the settlement with confirmed symptoms, received proper treatment, and began a new life in the settlement by working as a government servant according to her ability and interests, as well as earning extra money by selling vegetables and livestock. Together, five panels with thematic photos and objects illustrate how leprosy-affected people received an education, enjoyed a social life, got married, had offspring, and grew old.

Sorokdo National Hospital Hansen’s Disease Museum, South Korea

Sorokdo Leprosarium was originally established as a hospital on the west side of Sorok Island, a remote island off the southern shore of Goheung, South Jeolla in 1916 during the Japanese colonial period. It was expanded to cover the entire island with a total area of 491 ha in 1933. The island is 5 minutes by ferry from the mainland fishing harbor, Nokdong Port. According to a 1942 map, the island was divided into two districts: staff on the east side and patients on the west side, with separate landing ports. Thousands of leprosy-affected people were isolated there (Jung, 2013), first under Japanese law until 1945, then under Korean authority thereafter. In 1949, 6111 leprosy-affected residents lived on the island, even after the abolition of the Infectious Disease Prevention Law in Korea in 1963. Thirteen structures in the leprosarium have been designated as “Registered Cultural Heritage” by the Cultural Heritage Administration.

The Sorokdo National Hansen’s Disease Museum (hereafter Sorokdo Museum), located in a brand-new building, was opened in 2016 with financial support from central and local governments.⁶ The museum, with a total area of 2000 sq m, is divided into two major sections. Spaces on the first floor are dedicated to visitor services and a storage area with glass walls, where visitors can glimpse the rich collection of artifacts from the island. Major exhibitions on the second floor are thematically divided into six sections: Hansen’s Disease, Human Rights, Transition Space, Life, National Sorokdo Hospital, and Friendship.

Photos, text, and audio in the section on Hansen’s Disease show a brief history of leprosy and the contribution of medical elites to the development of medical treatments and the management and control of the disease from the Joseon Dynasty to the present, excluding the Japanese medical contribution. In addition, the exhibit highlights the campaigns within South Korea to reduce social stigma and discrimination against leprosy-affected people between the 1950s and 1980s.

The Human Rights section covers violations of human rights that happened during both the colonial period and after liberation in 1945. Issues include forced labor, sterilization, and abortion, to name a few. In addition to photos revealing the dictatorial policies of a former director of the leprosarium during the colonial period, various materials are used to introduce the terrible experiences of leprosy-affected people during the post-colonial period. For example, a stack of red bricks and tools are intended to express the painful story of former patients who were forced to work in the brick factory with their bare hands for construction on the island.

The Life section has been divided into several sub-themes to illustrate how leprosy-affected people suffered from the disease, as well as from starvation and social exclusion, while cultivating their life through education at the same time. There are displays of various relics, including wooden pestles, button hooks, medical stones, pots and bowls, and personal medical knives, that were used or innovated by leprosy-affected residents. Other sections show how former patients received medical training to make up for the shortage of medical staff. In addition, there are spaces to commemorate volunteers, who devoted their time to the hospital and leprosy-affected residents.

The Path of Illness Exhibitions, Taiwan

Losheng Sanatorium was built in a remote location near the capital city of Taipei in 1927 during the Japanese colonial period and started to admit leprosy patients in 1930. The original settlement with an area of 25 ha was built for 100 beds and was eventually developed to 30 ha in total to accommodate 1000 beds when the Leprosy Prevention Law was forcedly implemented in Taiwan in 1934 (Fan, 2008). The entire sanatorium was divided into septic and aseptic areas to separate patients and staff. During its peak in 1969, 1050 leprosy-affected residents were living in the settlement. The decision to demolish 17.4 ha of the sanatorium to make way for the construction of a transport depot in 2002 led to a series of protests and debates regarding human rights and the historic preservation of the settlement. Depot construction eventually began in 2007, and more than half of the original settlement was demolished. Hundreds of leprosy-affected residents lost their homes, and were relocated to a medical building or temporary housing nearby. Appeals on the basis of human rights and the preservation and restoration of the settlement were led by two activist groups, the Youth Alliance for Losheng and the Losheng Self-Help Association, and are still active.

The Path of Illness Exhibitions (hereafter the Losheng Exhibition) was a temporary exhibition curated by the Youth Alliance for Losheng through a bottom–up process. The 6-day exhibition from 3–5 to 10–12 August 2018 was held in a U-shaped dilapidated house, formerly a dormitory of leprosy-affected residents in the sanatorium. The exhibition consisted of a large number of ethnographic narratives and a collection of medical objects and personal items collected by young activists during the annual event of cleaning out abandoned houses in the sanatorium since 2013 (Wu and Huang, 2021).

The Losheng Exhibition is centered on the life journey of former leprosy patients and is divided into five rooms, including the Day Arriving at the Sanatorium, Fighting the Illness at the Corner, Disease and Treatments, History Matters, and Marriage and Parenting. In addition to medical archives of the disease, a large amount of exhibition text is from semi-structured interviews with former patients, who still live in and around the sanatorium. Room One exhibits the tragic experiences of six former patients who were brought to the sanatorium by cars or trains under Japanese law enforcement from various locations in Taiwan. Room Two shows the symptoms of the disease and how the disease has affected the lives of former patients. Instead of photos of former patients, quotations from interviews reveal the pain of the illness, emotional uncertainty, and social stigma that former patients have struggled with. Room Five shows the difficulty of marriage and parenting among former patients.

Whose difficult heritage?

The three colonial leprosaria in this research have played significant roles in advocating for historic preservation and human rights issues since the social history of leprosy regained its momentum in Asia in the 2000s. Consequently, museums in these three leprosaria intend to impress visitors with a patient-centered approach. Before entering the main exhibition of the Sungai Buloh Story Gallery, there is a photo of a resident standing in front of a window holding aloft an artificial limb. The contrast of the silhouette captures simultaneously the optimistic attitude of former patients and the tough life facing them. The Sorokdo Museum projects photos of residents in daily life on the wall at the end of the entrance to remind visitors to enter the exhibition with compassion for the people and their difficult past. Meanwhile, the Losheng Exhibition is a temporary display in an abandoned house where former residents lived. Given that the tension between activist groups and the government is ongoing, the pseudo-ruin displays and materials deliver a strong message of democratic involvement through temporary exhibitions, a form of artist expression.

Pertaining to historic preservation of the history of leprosy, museum exhibitions represent critical statements in the battle for heritage politics and generate contentious negotiations between governments, curators, and communities, including leprosy-affected residents within the settlements. Although the three museums, with the purpose of connecting with their democratic advocacy, successfully reveal to their visitors at first sight their intention of centering the patient, each museum has also developed a distinct interpretation under the influence of current national policies in relation to the colonial past and the cultural, social, and political contexts of today. In this research, three topics will be discussed to reflect the dilemma of “interpreting whose heritage for whom” in museum displays: interpreting the medical past in a post-colonial present, interpreting the difficult life of former patients, and interpreting for an unsettled present.

Interpreting the medical past in a post-colonial present

Historically, colonial leprosaria’s policies of segregation and isolation of leprosy-affected people sought to serve the economic and nationalist aims of colonialists and meet the medical and social needs of the leprosy sufferers during the colonial and post-colonial periods. In particular, the three leprosaria in this research played important roles in medical research of leprosy, including the development of treatments. The medical history of leprosy is a distinctly important part of the three exhibitions, although with different weight and areas of focus. The selection and interpretation of the medical history of leprosy become sensitive due to the political concerns of current governments and their connection with the colonial past. As a result, the inclusion of perspectives of former patients, who played an important part in the medical experiments, is highly affected and remains a critical issue in interpreting the medical past.

The ample text in the “Chronology of Events” at the Sungai Buloh Story Gallery consistently emphasizes how medical elites were dedicated to treating patients by using the medicine they developed in controlling the disease during the colonial period and afterward. The “remarkable” contributions of the Research Unit to the treatment of leprosy were noted throughout, with a special focus on the period after independence from the British Empire. For example, it is observed that, “The discovery [of the drug resistance in new patients] once again thrust Sungai Buloh Settlement into the limelight of the international medical community [in 1979].”

A medical treatment board⁷ is displayed, with “proof of patients’ identities and [their eligibility] to receive free medical treatment and necessary supplies from the government” (quote from the display in Sungai Buloh Story Gallery). Former patients are portrayed as “brave survivors and heroes” in assisting in the triumph of medical experiments and the achievements of the international medical community. A before–after photo of a female patient at the Sungai Buloh Story Gallery portrays the optimistic result of treatment. Ironically, patients’ emotions toward the treatment, either resisting or embracing, are not revealed.

Similarly, the Sorokdo Museum focuses on the achievement of medical elites from the Joseon Dynasty (1600s) through the medical missionaries in the modern era, but excludes the part of medical history during the Japanese colonial period. The entire medical history of leprosy is concluded with the quote: “Human history is a history of overcoming disease, and we overcame Hansen’s disease.”

While both museums above praise achievements of medicine in the triumphant management and control over leprosy, how Leprosy Acts by former colonial forces enabled the forced segregation of leprosy patients are not critically mentioned, much less any controversial stories of human experimentation. Expressly, both museum exhibitions avoid the discussion of forced treatments or other interventions, which were central to medical research and development.

In comparison, Losheng Exhibition skips formal displays of the colonial history of leprosy and focuses on the introduction of the disease itself and a patient-centered description of the impact of the disease on their life. For example, quotations in the exhibition reveal how the disease affected patients’ daily lives and anticipation of marriage and offspring. They read,

My curved fingers indeed make my life difficult in daily life. For example, I can pick up a paper bill. I might be able to pick up a coin of NT$ 10. If I dropped a NT$ 1 coin, I couldn’t pick it up.

A female patient would like to marry me, but I couldn’t accept it. People said the disease is infectious. I was suffering from the disease. If I got married, my children might get the disease. When I thought about this, I was so sad. I just couldn’t imagine if my children have to go through hardships as I did.

What is missing in all the museum exhibitions is an explicit critical appraisal of the segregation policies. With the ambiguity between being a hospital, a prison, or a laboratory, the nature of segregation often enters into much larger debates about “modern methods” (Bashford, 2004) to control the disease and civilize the colony, but is mostly portrayed as the philanthropic response to the public health problem presented by leprosy (Bernabeu-Mestre, Ballester-Artigues, 2004). As a result, the display of triumph in treating the disease might mislead the audience by omitting the responsibility for segregating and otherwise intervening in the lives of leprosy-affected people. This further curtails serious thinking about the sorrow and pain of the lives of the patients due to those segregation policies. For example, by concluding the section on patient lives in the Sungai Buloh Story Gallery, with the medical board on which there is an ID number assigned to each patient at admission to the leprosarium and a stack of medical records, it reduces human life to a number.

Interpreting the difficult life of former patients

A leprosarium was seen as a total institution that provided a place of residence and work for leprosy sufferers under collective management and control (Goffman, 1961). For the past few decades, each leprosarium has spent efforts on conducting oral histories of leprosy-affected residents and collecting artifacts used by them. Although thousands of leprosy-affected residents share similar memories, each one suffered from different forms of hardship in their life, such as how they were brought to the leprosarium, how they took care of their daily needs due to body deformity, and how their social life was affected by the disease, to name a few. Audio recordings, displays, and text are key elements to stimulate the empathy of and communicate with the visitors.

Given that the history of leprosy and leprosy-affected people was not a social topic known to the general public, curators are aware that such museum exhibitions may produce an intimate encounter through the crossing of boundaries of experience, and inculcate a form of empathy in the visitor (Bonnell and Simon, 2007). All museums in this research carefully restrict images of leprosy-affected residents that may cause visitors negative thoughts or fears of the disease. While the Sungai Buloh Story Gallery shows photos of leprosy-affected residents living in “a home away from home” happily and optimistically, no images of leprosy-affected residents are displayed at Sorokdo Museum at all except for the visual media at the entrance. At the Losheng Sanatorium, a large number of life experiences are contextualized by quotes from interviews with leprosy-affected residents, but no photos of residents are shown.

The lives of former patients after they were forcibly segregated in the leprosarium are one of the major displays in all museums of Hansen’s disease. Exhibitions in the section on “Life” in both the Sungai Buloh Story Gallery and the Sorokdo Museum focus on the contributions of governmental bodies to improve the lives of leprosy-affected residents in a total institution. The exhibition in the Sungai Buloh Story Gallery uncritically presents the everyday life of leprosy-affected residents. Similarly, an interpretation at the Sorokdo Museum praises the passion of leprosy-affected residents for learning, the will to live, the efforts of self-reliance, and the sublimation of pain through religion, art, and literature. However, while display cases with objects/tools invented by leprosy-affected residents show the creativity of patients with a disability to make daily life easier, simple text like “pot holder” or “bottom clamp” next to objects fails to connect them with the disease and the real hardships residents faced, since there is no further explanation of these items. On the contrary, the Losheng Exhibition utilizes original living spaces to illustrate the actual lives of leprosy-affected residents and displays quotations from interviews with former patients to bring sentiment and empathy to audiences. One quotation in the Losheng exhibition reads,

We invented tools to make our life easier. Clips are attached to the handles of utensils, so that I could eat by myself. I tightened a strip to both ends of a towel, so that I could rub my back when taking a shower.

Among interpretations of the lives of former patients, the policy toward marriage and parenting in leprosaria is especially unsettled. Former patients were allowed to get married, yet not allowed to raise children in leprosaria. Signs on a bedboard in Room Five at the Losheng Exhibition: “Oh my god. The supervisor is coming!” and “Kids hide underneath!” reveal the strong desire of leprosy-affected patients to secretly keep their children around instead of giving them away. In comparison, text at the Sungai Buloh Story Gallery reads: “All newborn babies of the patients would be taken care of by nurses at the Babies Home for six months . . . after the six months, patients would be forced to sign letters consenting to give their babies up for adoption.” Although this factual statement establishes that the Sungai Buloh Leprosarium was against raising children in the leprosarium, it lacks an exploration of inmates’ personal feelings, such as resistance, resentment, sadness, or happiness.

The Sungai Buloh Story Gallery highlights the humanitarian design of the settlement as a “paradise,” in the curator’s terms, where people lived their lives peacefully. In comparison with such an interpretation of colonial philanthropy, the Sorokdo Museum and the Losheng Exhibition present the leprosarium as a hell-like place, where former patients suffered from compulsory segregation, confinement, assault, sterilization, and abortion, but at the same time remained hopeful, with a passion for learning, life, and self-reliance.

Furthermore, in comparison with the traditionally authorized approach to the memories of former patients at both the Sungai Buloh Story Gallery and the Sorokdo Museum, an ethnographic-oriented narrative such as in the Losheng Exhibitions emphasizes direct testimonies of former patients, which are powerful media that stimulate emotion and engagement (Wu and Huang, 2021). As leprosy-affected people become the main interpreters of their own stories, a paradigm shift occurs in the societal remembrance of the lives of former patients.

Ideally, museums can be places where visitors can reflect on difficult pasts to engage in debate or have their understanding transformed (Trofanenko, 2011). Apart from their traditional role of holding valuable collections, organized and structured by academic and curatorial elites for people with education, museums should also work as a forum, where confrontation, experiments, and debates are encouraged to unfold (Cameron, 2004). Each of the museums/exhibitions were curtailed in their achievement of this ideal, due to the social and political realities of the current day. Although the Losheng Exhibitions were most expressive in giving direct voice to the patients, they were also the only temporary exhibitions because of the ongoing resistance of the government.

Interpreting for an unsettled present

The interpretation of difficult pasts is consciously selected and packaged under the influence of contemporary forces, that is, the subjective values of current governing structures and existing stakeholders. This means that it is subject to change. Given that segregation policies in leprosaria in this research were only abolished in the 1960s, debates on compulsory segregation policies in association with the issues of human rights in post-colonial contexts have been an especially unsettled and controversial subject. The selection and interpretation of materials have been political and strategic to avoid confrontation with the government in all three cases.

This does not mean that the museums do not contain critique of the history of leprosy and leprosaria. Transnational collaboration in promoting the legal claims of former leprosy patients in South Korea and Taiwan in 2005 for their suffering under Japanese colonial rule (Arrington, 2014) accelerated the discussion of human rights during the colonial and post-colonial periods. The Sorokdo Museum with financial support from central and local governments notably devotes an entire section to various violations of human rights. Images and text of forced isolation, excessive control, and unethical clinical operations are depicted as abstract cruel behaviors of Japanese directors during the colonial period or misconduct of the administrators and staff of Sorokdo Leprosarium after liberation. For example, the murder of the Japanese director by a former patient, Mr. Lee Chun-sang, is portrayed as stemming from resistance against the harsh control over patients. His words, “You’ve been too hard on your patients, take this knife” portray his deeds as heroic. However, the policy and origin of compulsory segregation are not mentioned. On the contrary, the Losheng Exhibitions, voluntarily curated by the Youth Alliance of Losheng, utilized the original living spaces of former patients and delivered a strong message about the forced evacuation of leprosy-affected residents and the delay of restoration of the sanatorium under the current government. Both exhibitions employ similar colonial pasts for new foundations of remembrance. While the Sorokdo Museum struggles to balance its role as an advocate for the leprosy community and a nationalist museum to reveal the national pain of its colonial past, the Losheng Exhibitions work as a tool to present the difficult lives of former patients and receive more public support, as it struggles for governmental recognition of its goals.

Although the Sungai Buloh Leprosarium and the Losheng Sanatorium shared a similar identity as part of transnational social movements for historic preservation in 2007 (Wang, 2020), they have developed different strategies to negotiate with their respective governments. The Losheng Exhibitions continue the spirit of the social movement to fight against top–down intervention. The Sungai Buloh Story Gallery eventually worked with administrative agencies, with the goal of bringing pride and dignity to former patients and presenting the leprosarium as a symbol of modernization during the colonial and independence periods.

The history of leprosy has never been a priority in cultural heritage and museum studies. The heritage-making in each museum/exhibition contributes to the remembrance of difficult pasts while also creating competition in gaining international recognition and fame. The huge aerial photo of the Sungai Buloh Leprosarium from the colonial period at the entrance with two quotations from prominent leprologists, Professor Bernhard Nocht in 1930 and Dr Herbert Wade in 1937, hints at its current importance as a potential World Heritage Site. The Sorokdo Leprosarium was selected as one potential site for World Heritage nomination by the Cultural Heritage Administration in South Korea. Although Taiwan is not an official state party to the United Nations, the Losheng Sanatorium was named “Potential World Heritage Site” in Taiwan. Although all the museums/exhibitions in these colonial leprosaria portray former patients as victims, their collective identity has been reinterpreted for modern needs, either for nationalist reasons or community coherence, to receive support in the process of heritage-making at home and abroad. Therefore, they tend to avoid assigning blame for the responsibility of the compulsory segregation policy in the case of the colonial period in the Sungai Buloh and Losheng cases and in the post-colonial period in all three cases. They are strategic in how they engage with their respective governments and in how they present their chosen narrative of the history of leprosy and leprosaria.

Conclusion

Colonial leprosaria in this research were colonial products and symbols of imperial modernity under the scheme of internationalizing control and management of leprosy. The recent revisiting of the forgotten history of each leprosarium highlights both their common and distinct traits, attributes, and qualities. As leprosaria still function as living places for leprosy-affected residents, on-site museums of Hansen’s disease become the first place to involve the public in this difficult past. While broadening our understanding of humanity, museums of Hansen’s disease also create controversy and debate for heritage politics, interacting with larger governmental and social interpretations and memories of the colonial past, as well as the post-colonial present.

This research reveals the difficulties of displaying and interpreting the history of leprosy. The connection of the leprosarium with its colonial past in the post-colonial context has a great influence on which text and objects are selected and how they are portrayed, either accusing the colonial past in the case of the Sorokdo Museum or praising colonial modernity in the Sungai Buloh Story Gallery. The post-colonial context in these two museums/exhibitions redefines the social significance of the leprosarium as it negotiates (or renegotiates) the role of colonial rule through museum interpretation. In comparison, the Losheng Exhibitions tries to avoid the complicated post-colonial present and focus on the impact of disease on leprosy-affected people and the unjust treatment by the current government. Although the three leprosaria in this research played significant roles in transnational social movements fighting for leprosy-affected people, constraints on presenting this difficult past produces a dilemma for each leprosarium at the national and international levels.

These three case studies show diverse consequences under the influence of their varied political reactions to the colonial past and the curatorial constraints in museum and heritage studies. Answers to questions like “Who tells the stories?” and “Whose stories are told?” may illuminate bias and stereotypes. Nevertheless, museums of Hansen’s disease as collective memories exemplify possible pathways for interpreting difficult history and the importance of embracing the diversity of heritage.

Footnotes

Acknowledgements

This research was partially supported by the Korea Foundation in 2016.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Notes

Author biographies

Shu-yi Wang works as an Assistant Professor (adjunct) in the Department of Landscape Architecture at Chinese Culture University, Taiwan. Her research explores the complexity of heritage studies of historic sites and places, especially the stratification of historic landscapes that reveals pain and unsettled pasts in Asia. For the past decade, she has conducted fieldwork to investigate the constant change in the evolving narratives of the history of leprosaria, and has participated in social movements on preserving the history of leprosy.

Jaehyung Kim is an Assistant Professor at Korea National Open University. As a sociologist, his main research interest centers on the diverse issues of leprosarium, public health, and treatment of Hansen’s disease, and the lives and social movements of people affected by Hansen’s disease. He has published many articles in peer-reviewed journals, book chapters, and a book on these issues. In addition to academic works, he has also been actively engaged in the movement of preserving Sorok National Hospital, and currently is the chairperson of the Advisory Committee of the Sorokdo National Hospital Hansen’s Disease Museum.

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