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 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 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. 1354-1355. the Black Death as the inaugural issue of the journal are impacted by it. ■

This was very exciting to Professor Keri Inglis, who read letters, memoirs and me; it marks a new approach to introduced oral histories to describe the ways in which Hansen’s disease studies across people diagnosed with Hansen’s disease imagined their disciplines, informed by post- community and the landscape of their institution. colonialism. Rather than focusing What emerged was a multifaceted examination on the institutions themselves, of Hansen’s disease through history and around the or medical and governmental world that emphasized the commonalities between treatment of those with the scholars working on the illness in fields that are not disease, the papers were united usually brought together. Moreover, by breaking Conference emphasized in their focus on the people who were diagnosed down academic barriers through a focus on the person "commonalities between and living with the illness, and social responses to affected by the disease, this phenomenal collection of scholars” working on leprosy Hansen’s disease as human experience. presentations may prove to be an important step in in fields not normally brought For example, Professor Aleksandra Pfau shifting public attitudes and discourse that continue to together introduced remission letters from 15th century evoke Hansen’s disease as a threat to the social order, France, typically written by those seeking the despite the availability of a medical cure. king’s pardon and remission for a crime. While Kathryn M. Tanaka is a tenured lecturer at the formulaic, some of these letters made mention Faculty of Historical and Cultural Studies, Otemae of the illness and the authors’ experiences in the University, Japan. Her main area of study is Hansen’s community and in hospitals, which Pfau used disease literature, in particular the ways in which to introduce the complexities of community community is created in literature by people who have responses to Hansen’s disease and the fluidity of experienced the illness. She is currently completing her treatment and diagnosis. book, Through the Hospital Gates: Community in This approach was echoed in the presentation by Japanese Hansen's Disease Literature.

3 REPORT FTEL Dec 18 • No. 92 Profoundly Misunderstood Tokyo Albinism Conference touches on some familiar themes for leprosy.

power, and wealthy business people who want to be more successful. According to the UN independent expert on the enjoyment of human rights by persons with albinism, Ikponwosa Ero, there have been some 700 documented attacks on persons with albinism in 28 countries since 2006, involving murder, mutilation and sexual violence—and those are just reported cases. A first for Japan: an international conference on albinism A survivor of one such attack spoke at the conference. Ten years Albinism is a genetically inherited condition. Leprosy is ago, Mariamu Staford was set upon in the night an infectious, curable disease. But in terms of society’s by four men, including a neighbor. Her arms were response, they share some unwanted similarities. hacked off in front of her child, and she lost the The recent Tokyo Albinism Conference unborn baby she was carrying. highlighted the ways in which ignorance, superstition A journalist who went undercover to investigate and mistaken beliefs about people perceived as the lucrative trade in body parts for the BBC found her different can have harmful—and, especially for report displeased the authorities, for whom the image of persons with albinism—deadly consequences. the country was more important than the human rights The conference was organized at the initiative of persons with albinism. “I was told I had tarnished the of Nippon Foundation Chairman Yohei Sasakawa, reputation of Tanzania,” said Vicky Ntetema. who on his travels to Sub-Saharan Africa as WHO Goodwill Ambassador for Leprosy Elimination had WRONG THINKING become aware of the violence and discrimination As with efforts to reduce the stigma and prejudice that persons with albinism face. It drew panelists associated with leprosy, education and advocacy are from Tanzania, Kenya, Malawi, Hong Kong, Canada, crucial to changing mindsets. as well as host country Japan, among others. “Wrong thinking exists in every culture,” said Peter Ash, who founded the NGO Under the Same Sun for persons with albinism. “There is misinformation around this condition even in Many with the condition live countries with high levels of medical care.” in fear of being assaulted Governments need to be sensitized— “some government departments have no understanding of or killed for their body parts. the issue,” the conference was told—and there needs to be political will to protect persons with albinism. Albinism prevents the body from producing There needs to be engagement with media, with melanin, the pigment that colors the skin, hair and religious leaders and with tribal chiefs to increase eyes. Those born with the condition have reduced acceptance of persons with albinism. vision and are more susceptible to skin cancer— Albinism needs to be fully recognized as part of many people die before the age of 40 if they do not the disability sector, with access to the considerable take proper precautions. resources that exist there. The role of the judiciary is In North America and Europe, 1 in 17,000-20,000 important to upholding the law and in prosecuting people have albinism, but the prevalence rate is much crimes against persons with albinism. higher in Sub-Saharan African countries such as In particular, there is a need for more positive role Tanzania, where it is estimated at 1 in 1,400 people. models for persons with albinism—public figures Problems persons with albinism encounter range such as the judge and the parliamentarian among the from name-calling through discrimination in education panelists—who can inspire through their words, deeds and employment to violent physical attack. In Sub- and successes, and help change society’s perceptions. Saharan Africa, because of superstitions that they have “Nobody will accept us until we accept special powers, many with the condition live in fear ourselves,” said Connie Chiu, a Hong Kong-born of being assaulted or killed for their body parts, which person with albinism who has made a name for are used by witchdoctors to make magic potions or herself as an international fashion model and jazz Model and jazz singer amulets. Fueling the lucrative trade are politicians who singer. “I have albinism. So what? Those with the Connie Chiu: “I have consult witchdoctors because they want to stay in problem are society.” ■ albinism. So what?”

4 FTEL Dec 18 • No. 92 AMBASSADOR’S JOURNAL A Coordinated Approach to Leprosy On his latest visit to Indonesia, WHO Goodwill Ambassador for Leprosy Elimination Yohei Sasakawa is encouraged to see the government take a multi- sectoral approach to tackling the medical and social dimensions of the disease.

With participants in the meeting at the Coordinating Ministry for Human Development and Culture in Jakarta on Oct. 2. INDONESIA (October 1-6) only a medical issue,” he said. “It is also accompanied In October I returned to Indonesia, visiting Jakarta, by discrimination and stigma. To tackle it we need the capital, and Province in the eastern part the cooperation of not only the health ministry but of the country. Just days before my arrival, Central of other ministries too. That’s why I have brought had been struck by an earthquake and together the relevant people for this meeting.” tsunami, causing tremendous damage and casualties. As Goodwill Ambassador, I have traveled to I had visited in March and my many countries over the years promoting leprosy heart went out to all affected. elimination activities, but I have not participated in The purpose of my latest mission was to discuss many meetings about leprosy involving high-level with the central and provincial governments, as well bureaucrats drawn from different ministries and as with PerMaTa, an organization of persons affected agencies. I felt it was a very encouraging sign as a by leprosy, how to further reduce the number of multi-sectoral approach is required to deal with all the cases of leprosy in Indonesia and eliminate leprosy- issues associated with leprosy and its consequences. related stigma and discrimination. I had also arranged Some 30 people took part, including bureaucrats to continue my advocacy work through local media. from Dr. Sigit’s ministry, and from ministries and My first appointment was with the Coordinating agencies under its jurisdiction; bureaucrats from Ministry for Human Development and Culture in ministries such as home affairs, industry and Jakarta on October 2. The ministry is one of four communication that are under the wing of other coordinating ministries that are a distinctive feature coordinating ministries; and the chairman and vice- of Indonesia’s system of government. chairman of PerMaTa. The Coordinating Ministry for Human One of the issues I have found in leprosy- Development and Culture has a wide brief, endemic countries is that while there is recognition covering health, education, religious affairs, female of the need to find as many new cases as possible, empowerment and child protection, as well as villages, among those in charge there is sometimes the fear disadvantaged regions and transmigration, among that they will be held responsible for an increase in others. As the name suggests, its role is to coordinate case numbers. Meanwhile, there remains a deep- and synchronize policy formation and governance in rooted fear and shame associated with a diagnosis of these different areas. The coordinating ministry has leprosy that can prevent those who need treatment overall responsibility for anti-leprosy activities in the from seeking it. Taken together, these are some of country and had organized its first awareness meeting the reasons why leprosy programs do not always on leprosy to coincide with my visit. function as well as they should. Dr. Sigit Priohutomo, deputy minister for health That’s why I was delighted to hear Dr. Sigit say: improvement, is very knowledgeable about the “Finding new cases is not something to be ashamed disease, having worked at a leprosy clinic for five years of but something to be proud of; let us consider it a and engaged in case-finding activities. “Leprosy is not privilege to find new cases.”

5 FTEL Dec 18 • No. 92

and take part in television and radio programs. Appearing with me were PerMaTa’s chairman, Paulus Manek, and Dr. Ritha Tahitu, head of disease control at Maluku’s provincial health department. We stressed the importance of early diagnosis and treatment; said that leprosy was neither a curse nor a punishment nor a hereditary disease; assured that it was curable and not something to be fearful of; and urged family members to check each other for skin patches that are symptoms of the disease.

Dr. Sigit Priohutomo, deputy minister for health improvement

He also had words of praise for PerMaTa’s “Self stigma is a difficult Paulus Manek and Al Kadri, who had talked about issue, but you have turned their personal experience of the disease, their battles with stigma and their current activities to help other it into something positive.” persons affected by leprosy. “Your words have many implications for us. Self-stigma is a difficult issue, but The next day I continued my media work, you have turned it into something positive.” appearing on a radio phone-in program on RRI (Radio That evening, I was interviewed by the Jakarta Republik Indonesia). It is always of great interest to Post. The English-language newspaper’s youthful me to hear the kinds of questions people ask about managing editor is Mr. Ary Hermawan. He told me leprosy and remind myself that we can never do too that his mother is a person affected by leprosy and much to inform the public about the disease. that he is committed to promoting understanding Although only a short program, there was enough and awareness through the media. As one who time for several listeners’ questions, including “What has always viewed the media as a vitally important country did leprosy originate in?” “What should I partner in the fight against leprosy, I was very do if I’m diagnosed with leprosy?” and, doubtless encouraged to hear this. prompted by my country of origin, “Is Japan taking On October 3, I flew 2,500 kilometers east of the lead in leprosy elimination activities?” Jakarta to Ambon, the capital of Maluku Province. I had been scheduled to attend another Of Indonesia’s 34 provinces, Maluku has the fourth stakeholders’ meeting in the company of Ambon’s highest number of cases annually, while its capital, mayor, but unfortunately he had been called away Ambon, has a prevalence rate of the disease of 2.49 on urgent business. The meeting went ahead as per 10,000 population. This is one of the provinces planned, however, and it was another opportunity to where efforts against the disease will need to be stress that leprosy is not solely the responsibility of ramped up if Indonesia is to achieve its goal of the health department but requires the involvement eliminating leprosy as a public health problem in all of other sectors of society, especially when it 34 provinces by 2019 and all districts by 2024. comes to correcting misperceptions of the disease, During my stay, I attended a stakeholders’ addressing discrimination and creating conditions meeting at the offices of the provincial government where someone can seek treatment without fear. attended by Governor Said Assagaff and Among those taking part were a number of representatives from various departments and persons affected by leprosy. They included a pastor agencies. One of the challenges Maluku faces is diagnosed with leprosy in 2017 who had been geographic: the province is made up of some 1,500 islands and is 70% jungle, making access to patients difficult. In addition, stigma and discrimination remain deep-rooted, so patients and their families make efforts to conceal the disease, resulting in delayed diagnosis and treatment. As part of my effort to dispel myths about the disease, I appeared on Televisi Republik Indonesia (TVRI) later in the day to talk about leprosy. I put Appearing on TVRI (Televisi great faith in reaching people through local media Republik Indonesia) to talk and take every opportunity to meet with journalists about leprosy.

6 FTEL Dec 18 • No. 92

(Right) In the studios of RRI (Radio Republik Indonesia); (far right) Paulus Manek (back to camera) discusses plans for a branch of PerMaTa in Ambon, Maluku Province. discriminated against by his family and neighbors. wanted to know. “A pastor’s job is to help families in need, but when He then went on to explain PerMaTa’s mission I became ill with leprosy I was shunned by society,” and role in building a society free from stigma he said. But he made a point thanking an Ambon and discrimination, the challenges involved and health worker who had come to his rescue and the commitment required. Perhaps it was Paulus’s showed him unlimited kindness. straightforward approach and enthusiastic manner, “If there is somebody with leprosy near you, but when he asked them a second time about please show them compassion,” he said, adding that whether or not there should be a branch of PerMaTa only those who have experienced the disease for in Ambon, their answer was a resounding yes. themselves can truly understand the pain of stigma. Paulus then declared: “I now formally declare the “Mr. Sasakawa, don’t forget people like me.” opening of the Ambon branch.” Toward the end of the meeting, PerMaTa’s I was very happy to present at this moment. Paulus Manek rose and introduced himself. He asked Changing society involves grassroots efforts as well persons affected by leprosy in the room to raise their as initiatives at the upper echelons of government. hands and explained that PerMaTa was planning to On my latest visit to Indonesia, I had witnessed open a branch in Ambon. “Are you all in favor?” he examples of both. ■

MAKING A DIFFERENCE

In the various discussions I attended went on to study together with Paulus Manek, I had the at university. chance to hear him explain to government It was when officials, TV viewers, and persons affected he encountered by leprosy what motivates him in his PerMaTa that work as chairman of PerMaTa, Indonesia’s he found his organization of persons affected by leprosy motivation in life. founded in 2007. “Through Paulus, who was born into a poor PerMaTa, I family, contracted leprosy as a boy, but want to make Paulus Manek is readied for a TV appearance (left) and hands information neither he nor those around him knew sure that people about PerMaTa to a prospective member in Ambon, Maluku Province (right). the significance of the white patches that don’t have to had appeared on his skin. His mother took go through the same things that I did. when patients stop taking their MDT for him to see a doctor, who prescribed some I’ve experienced discrimination and whatever reason, but by becoming involved medicine that he took for a year and a half. isolation. Now I am able to help other we can help them resume their treatment.” It wasn’t cheap and it didn’t work. Only persons affected by leprosy and give them I was especially impressed as I later did a local priest advise him to go to opportunities to lead a normal life. listened to Paulus pitch the idea of a health clinic where he could get proper “What we need is a change in society’s forming a new branch of PerMaTa in treatment with MDT, and for free. mindset. I have some small residual disability Ambon to potential members. At home, his father and siblings as a result of leprosy, but it’s not a problem. I “You won’t get a salary from this work. distanced themselves from him because could have had my fingers straightened, but You won’t get rich. But what you will be they didn’t know how the disease was I keep them this way as evidence that I once doing is helping people.” transmitted or how it was cured. His had leprosy. The problem is social stigma, I heard Paulus say more than once symptoms worsened and his fingers and the fact that people think leprosy is a that he does not want others to have to began to bend out of shape. He thought curse, or that it’s very contagious. experience the hardships he endured. But at of running away and even giving up on “As persons affected by leprosy, we the same time, he also said he is grateful for life altogether. But when treatment with know all about the disease and understand the opportunities leprosy has given him. MDT began to take effect, he resumed his the feelings of leprosy patients. We hope As I watched him talk passionately education. He was the only person in his the health authorities appreciate that and about having a positive impact on the lives family to graduate from high school and allow us to play a role. There are cases of others, I understood well what he meant.

7 NEWS FTEL Dec 18 • No. 92 Global Leprosy Update 2017 10-year trend characterized by slow but steady decline.

In 2017, a total of 210,671 new leprosy cases and Indonesia—accounted for 80.2% of the new were detected and reported to the WHO by 150 caseload globally in 2017. countries, as detailed in the annual global leprosy Twenty-two countries are designated as global update published in the Weekly epidemiological priorities. Except for South Sudan, which did not record.* This represents a decrease of around 7,000 report data, these countries reported 95% of all cases compared to 2016. At the end of the reporting new cases. While there was an overall reduction in *Since the global leprosy year, 192,713 patients globally were recorded as the number of new cases detected in global priority update was published being “on treatment.” countries compared to 2016, increases in the number on 31 August, the WHO As in previous years, the WHO’s Southeast Asia of new cases were observed in seven countries: has now received reports Region accounted for the bulk of the global leprosy Bangladesh, Brazil, Comoros, Mozambique, Nepal, from 159 countries and burden, with two countries, India and Indonesia, the Philippines and Sri Lanka. territories—the highest contributing 67.4% of new leprosy cases globally The 10-year trend between 2008 and 2017 is number ever—and and 92.6% regionally. Brazil contributed 92.3% characterized by a slow but steady decrease in the adjusted the total of new of new leprosy cases in the Americas Region. number of new cases detected globally, down from cases detected in 2017 Together these three countries—India, Brazil 249,007 in 2008. to 210,942.

WORKING GROUP

The Global Partnership for Zero Leprosy is scale-up, monitoring and evaluation of best launching an Operational Excellence Working practices and promising innovations in national Group. Anyone working in leprosy or affected leprosy programs. Applications are accepted by leprosy is invited to apply to join the working through 31 December 2018. group, which is to foster the development, use, For more information, visit zeroleprosy.org ■

FROM THE EDITOR FOR THE ELIMINATION OF LEPROSY THE BIGGER PICTURE Publisher Yohei Sasakawa Ikponwosa Ero, the UN independent expert on everyone is treated with dignity and respect is key. Editor the enjoyment of human rights by persons with Two women with disabilities—Nidhi Goyal, Jonathan Lloyd-Owen albinism, first made an appearance in these pages an activist and comedian from India, and Mayaan Layout two years ago in our coverage of the 2016 Global Ziv, a fashion photographer and entrepreneur from Ryo Mogi Appeal to End Stigma and Discrimination against Canada—addressed this issue recently on the BBC Photographer Persons Affected by Leprosy launched from Tokyo. World Service radio series “The Conversation.” Natsuko Tominaga She had been one of six panelists in a session Both agreed that social attitudes were the No. 1 Editorial Office titled “Health and Human Rights—Combating thing that needed changing, since social attitudes, or 5th Floor, Nippon Discrimination” discussing some of the challenges environments or “the way we design our worlds” Foundation Building, facing those with leprosy and other diseases, are the actual disabling factor that limits a persons 1-2-2 Akasaka, Minato-ku, disabling conditions and health impairments. with disability from living they way they want to. Tokyo 107-8404 She was back in Japan last month for the Tokyo “We need to be comfortable with asserting a level Tel: +81-3-6229-5377 Albinism Conference (see page 4), organized by of standards, of, quite frankly, human rights, that Fax: +81-3-6229-5388 Nippon Foundation Chairman Yohei Sasakawa, other people take for granted,” said Ziv. “If you live [email protected] who in his capacity as WHO Goodwill Ambassador with a disability, then speaking up and having your for Leprosy Elimination makes countering stigma voice heard in any opportunity is really important.” With support from: and prejudice a core feature of his work. As For the non-disabled, Goyal had this advice about Sasakawa Memorial Ms. Ikponwosa ran through the spectrum of giving those with disabilities “a seat at the table.” Health Foundation, discrimination that persons with albinism face, it was She made the point that it’s also about recognizing The Nippon Foundation a timely reminder that beyond the need to address that “you’re not giving anyone the space, you’re stigmas specific to albinism—or leprosy or any other not creating a space for anyone, because the space www.nippon-foundation. disability—fostering an inclusive society in which belongs to all of us.” It is a message worth repeating. or.jp/en/ www.smhf.or.jp/e/

©2018 The Nippon Foundation. All rights reserved by the foundation. This document may, however, be freely reviewed, abstracted, reproduced or translated, in part or in whole, but not for sale or for use in conjunction with commercial purposes. The responsibility for facts and opinions in this publication rests exclusively with the editors and contributors, and their interpretations do not necessarily reflect the views or policy of the Goodwill Ambassador’s Office.

8