Leaders' Ill-Informed Remarks
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December 2018 • Number 92 • Leprosy is curable • Free treatment is available • Social discrimination has no place Coordinated thinking: (L to R) Paulus Manek, Dr. Sigit Priohutomo, the Goodwill Ambassador and Al Kadri in Jakarta on Oct. 2 (see p.5) MESSAGE CONTENTS Leaders’ Ill-Informed Remarks Some 16 years have passed since I first became Beijing Olympics and the issue was resolved. I also the WHO’s Goodwill Ambassador for Leprosy wrote to the makers of an animated film about a Elimination. During that time, I have seen and heard scene that depicted leprosy in a distorting light, and various influential leaders, the media, filmmakers and it was amended. others use leprosy as a metaphor for something bad. Recently, television commentators in the United In doing so, they draw on associations of the disease States took to scaremongering about a “migrant as something frightening, incurable and “unclean.” caravan” as it approached the country’s southern Given that leprosy can be treated and cured, it is border. They claimed that it carried with it the threat extremely regrettable that among world leaders are of disease outbreaks, including leprosy. persons who make such insensitive remarks. Fear, misinformation and ignorance have serious Message 1 In June, French President Emmanuel Macron repercussions. In particular, I urge those in positions Viewpoint gave a speech in which he said that nationalists were of influence to choose their words with care. I invite Toward a more complete rising “a bit like leprosy across Europe”; and again, in all of you to write your own letters of protest when study of leprosy history 2 October, he decried “nationalist leprosy.” Wherever you encounter instances of leprosy being used in Report possible, I write to those concerned and ask them to a stigmatizing way. When you do, please refer to Tokyo Albinism reflect on what they are saying. the UN resolution on elimination of discrimination Conference 4 I have sent letters to Pope Francis on several against persons affected by leprosy and their family occasions when he summoned the image of leprosy members adopted in December 2010. Ambassador’s Journal Indonesia 5 to condemn some aspect of the church establishment I believe that the efforts each one of us takes, as that he found wanting, and requested that he not do they build up over time, will lead us toward a world News so. I wrote to the IOC and the Chinese government where leprosy is no longer misunderstood. Global leprosy update when it seemed that persons with leprosy would be 2017 8 banned from entering the country at the time of the — Yohei Sasakawa, WHO Goodwill Ambassador From the Editor 8 1 VIEWPOINT FTEL Dec 18 • No. 92 Erasing Boundaries A recent conference sets leprosy history studies on an exciting new path. In September and the ‘Leper’ Reconsidered was our proposed solution. 2018, McGill Both Courtney and I are medievalists University specializing in the history of medicine and/or social in Montréal, welfare, with particular attention to leprosy. As Canada hosted a such, we are acutely sensitive to the ways in which conference that leprosy has been stereotyped as a paradigmatic brought together ‘medieval’ disease, in the most sensationally academics from negative sense of that term. a wide array of This is unfortunate in two ways. First, the new AUTHOR: fields and time histories of medieval leprosy pioneered by François- Dr. Anna Peterson periods to begin Oliver Touati, Carole Rawcliffe and Luke Demaitre, Dr. Anna Peterson is a conversation which have overturned previous ideas about how a historian of medieval aimed at medieval societies viewed leprosy and treated those welfare institutions. She is broadening and with the disease, are often overlooked by non- currently a Mellon Fellow unifying the specialists. Second, the inordinate focus on leprosy at the Pontifical Institute discussion on in the medieval West has obscured other histories of of Mediaeval Studies in Toward a more complete view: leprosy and those leprosy in other parts of the world, and in other eras. Toronto, Canada working “Leprosy has been stereotyped as affected by the That being said, the way in which both popular on a project titled: a paradigmatic ‘medieval’ disease.” disease. and academic writing discusses this illness, especially ‘Detesting such neglect Leprosy and the in the medieval context, is often incorrect. We knew and abuse’: the Church’s ‘Leper’ Reconsidered had its origins in the 2016 Leeds that the only way to break down the artificial barriers response to corruption in International Medieval Congress where I had co- that existed—not only between time periods, but hospitals and leprosaria organized, along with Dr. Elma Brenner from the also disciplines—was to host a conference. in western Europe (c. Wellcome Library, a strand titled Leprosy and Identity. 1200–1342). This included a paper by Courtney Krolikoski, with INTERDISCIPLINARY FRAMEWORK whom I spent the majority of the conference. One of Fundamentally, Leprosy and the ‘Leper’ Reconsidered was the topics we kept circling back to was why there was conceived as a means to explore how communities no complete study about the history of leprosy. Leprosy around the world have approached leprosy and A NEW APPROACH “Leprosy opens more windows onto the past disciplines as diverse as medieval European history than any other disease,” Professor Luke Demaitre and modern Japan cinematography. Of course, remarked in his keynote address at Leprosy and research into changing forms of discrimination and the ‘Leper’ Reconsidered. This observation could exclusion are a part of Hansen’s disease research as be extended to argue that leprosy, or Hansen’s a whole, but this conference helped highlight other, disease, in fact opens more windows to think less-considered parallels. about discrimination and exclusion in the present An example would be the iconography of as well as the past, Kathryn M. Tanaka writes. Hansen’s disease in religious discourse. Many In a time when U.S. news commentators evoke presenters discussed the religious significance of “leprosy” together with “smallpox, rabies, and HIV” as a this in Catholic theology, and Professor Susan Burns Kathryn M. Tanaka menace associated with migrant populations, it is clear introduced some parallels in the Buddhist traditions that the stigma persists and the disease has powerful of Japan during her keynote lecture. Gender was associations with perceived threats to society today. In another common theme of the conference, and that sense, an interdisciplinary and global conference on several presenters such as Dr. Lucy Barnhouse and the subject of Hansen’s disease was long overdue. my own work explicitly foregrounded the gendered As a scholar of Japanese literature, there were experience of Hansen’s disease. several features that I found particularly useful about Furthermore, as a whole the papers represented this conference, which I attended to present work an important shift in the study of Hansen’s disease done for Professor Yukiko Araragi’s grant project, that I found particularly important and inspiring. “Polyphonic Approaches to Leprosy Problems: New Rather than strictly historical or theological Research for the ‘Era of Reconciliation’.” approaches to the subject, the papers all shared First, I was impressed with the recurring themes an interdisciplinary approach that incorporated an brought forward by Hansen’s disease that connected element of anthropology. 2 FTEL Dec 18 • No. 92 leprosy sufferers. We invited historians, scholars The Medieval Globe.* This was the first history of of art, film, archaeology, religion and literature to Late Medieval and Early Modern plague to embrace participate, and we also included new theoretical a Eurasian perspective, and to engage on a high tools such as disability studies, and new historical level with the most recent immunological and techniques like digital humanities. bioarchaeological research. Green has become a vocal advocate in the professional and public media for closer integration of medical history and the science of infectious Our aim was to bring new disease; this was particularly notable during the clarity to questions about the Ebola crisis, where she penned numerous essays and op-ed pieces, and created new courses for her human experience of leprosy. history undergraduates to model how specialists in the past and biomedical scientists can mutually At the same time, we did not neglect crucial enrich their analyses. medical and scientific histories of leprosy, while Most recently, she co-authored an open letter anthropological, archeological and material culture with Dr. Helen King in The Lancet** calling for * Monica Green (ed.), contexts also featured. We provided a space to scientists and physicians to consult historians as Pandemic Disease in examine the disease’s impact as it intersects with a means of creating an open dialogue between the Medieval World: gender, class and race, and addressed the complex our two fields in an effort to ensure that the Rethinking the Black and violent history of the term ‘leper’. history in medical articles reflects the current Death, the inaugural Our aim was to bridge the gap between historiographical approach. issue of The Medieval scientists and social scientists to bring new clarity We look forward to the second meeting of Globe, 1, No. 1 (2014). to questions about the human experience of Leprosy and the ‘Leper’ Reconsidered because we hope ** Helen King and Monica leprosy, and to open new research opportunities, to continue to foster a strong dialogue between the Green, “On the misuses modeled on the work of the historian of medicine humanities and the sciences so that we can develop of medical history,” The Professor Monica Green. In 2014, Green edited well-rounded and accessible studies in order to Lancet 391, no. 10128 Pandemic Disease in the Medieval World: Re-thinking continue to demystify leprosy and the people who (2018): pp.