October 2017 • Number 87 • Leprosy is curable • Free treatment is available • Social discrimination has no place The Goodwill Ambassador receives a gift from Sorofo Self-Care Group of people affected by leprosy in North Maluku Province, Indonesia, in July 2017. MESSAGE CONTENTS My Hopes for the Special Rapporteur In September, the UN Human Rights Council a member of the UNHRC Advisory Committee, appointed a new Special Rapporteur on elimination of spent two years compiling a report on the extent to discrimination against persons affected by leprosy and which countries were implementing the Principles their family members. Out of 11 excellent applicants, and Guidelines that accompanied the 2010 UN the council chose Dr. Alice Cruz of Portugal. resolution. In his report, he strongly recommended Since Old Testament times, leprosy has been a the appointment of a Special Rapporteur. highly stigmatizing disease. While case numbers have As the UN faces financial constraints, there come down dramatically in recent decades through was a negative attitude toward establishing a new, efforts led by the WHO and the effectiveness of additional mandate. However, the resolute efforts of Message 1 multidrug therapy, it is no exaggeration to say that Japan’s foreign ministry and Ambassador Mitsuko Interview the discrimination persons affected by leprosy face Shino in Geneva won the understanding of member Dr. Alice Cruz has been overlooked until now. countries, resulting in Dr. Cruz’s appointment. I very UN Human Rights In 2003, I approached the then UN Commission on much appreciate this decision and the cooperation of Council Special Human Rights to seek its support in tackling this issue. all who were involved in this process. Rapporteur on leprosy 2 Transcending politics, religion, ethnicity and national I look to Dr. Cruz in expectation that she will Ambassador’s Journal boundaries, leprosy-related discrimination was a huge grasp the realities of the situation in each country Return to Indonesia 6 problem and unknown to people the world over. as best she is able—in particular, investigating any Thanks to the cooperation of the Japanese government, discriminatory laws, institutions and practices that News a resolution on elimination of discrimination against remain—and help pave the way for persons affected Global leprosy update persons affected by leprosy and their family members by leprosy to live in a truly inclusive society without 2016; India national was adopted by the UN General Assembly in 2010 discrimination. Let all of us support her in this work. leprosy conference with the unanimous support of 194 countries. announcement 8 Subsequently, Mr. Imeru Yigezu of Ethiopia, — Yohei Sasakawa, WHO Goodwill Ambassador From the Editor 8 1 INTERVIEW FTEL Oct 17 • No. 87 ‘You Need to Reach Deep Waters’ The new Special Rapporteur on leprosy discrimination prepares to take the plunge. Why did you apply for the position? strictly academic view. I also learned to take action It was something I felt I had to do, following years toward eliminating discrimination and its exclusionary of personal, academic and activist engagement with factors. Finally, I believe that having a UN Special persons affected by leprosy. Over that time, I have Rapporteur who comes from the grassroots will be in come to know the structural barriers they still face to itself empowering for persons affected by leprosy. a full life, and the way these disrupt their individual lives, bodies and identities. I have also come to know Tell us more about your background in leprosy how difficult it is to remove these barriers. and human rights. However, for vulnerable persons who face I’ve devoted almost all of my academic and multiple discrimination in their daily lives, there is no professional life to leprosy. My Master’s thesis is on PROFILE time to lose. This newly created mandate for a Special the prophylactic model that imposed the compulsory Dr. Alice Cruz was recently Rapporteur represents an opportunity to act quickly segregation of persons affected by leprosy throughout appointed by the UN under the United Nations system. It also represents an the twentieth-century. It analyzes the biopolitical Human Rights Council exceptional opportunity to promote the role of states project behind it and reveals the life stories of people as Special Rapporteur in changing the structures that frame the way society who still inhabit former leprosy colonies. on the elimination of looks at, and relates with, persons affected by leprosy. My PhD thesis identifies, in countries where discrimination against leprosy is an endemic neglected disease and in persons affected by leprosy What qualities do you bring to the post? countries where it is an imported and rare disease, and their family members. In order to tackle leprosy-related discrimination, the different barriers preventing persons affected A medical anthropologist you need to reach the deep waters where leprosy’s by leprosy from accessing early diagnosis and high- and researcher, she has experience interacts with structural conditions. You quality care, as well as their social, economic, family done extensive work on the just can’t stay at the surface of things, because you’re and personal circumstances. biopolitical and biosocial looking for more than mere conjunctural adjustments, I have been engaged also with the rights of other aspects of leprosy. A although they are also necessary. You’re looking for vulnerable groups, such as indigenous women and Portuguese citizen, she a structural change in the minds of people that might children, researching interculturality as key to the currently teaches at the Law ensure the sustainability of social inclusion. Moreover, promotion of maternal and child health. That helped School of University Andina not only is leprosy-related discrimination multilayered to deepen my understanding of gender, age and Simon Bolivar in Ecuador. and made manifest in different spheres of society, its cultural issues in leprosy. experience is also composed of several layers of bodily Working as a volunteer with MORHAN, I have experiences, emotions, relational dynamics, challenges, studied good practices, such as the indemnification human rights violations, and struggles for dignity that granted by Japan’s government to persons affected are frequently silenced in the public sphere. by leprosy who were segregated in the past, and its influence on Brazilian Federal Law 11.520.* I also worked on the development, monitoring and evaluation of projects aimed at eliminating leprosy I consider the main quality and the stigma attached to it, and participated that I bring to the post is my in the development of WHO guidelines for strengthening participation of persons affected by experience at the grassroots. leprosy in leprosy services. In addition, I translated into Portuguese UN The practices and strategies required of a UN Resolution 65/215 on elimination of discrimination Special Rapporteur don’t afford the time for such against persons affected by leprosy and their family in-depth comprehension. Therefore, I believe my members, as well as the accompanying Principles previous academic and activist experience has and Guidelines, and worked for their dissemination prepared me to grasp rapidly the framing of leprosy’s in Brazil. I also helped to organize the first in a series experience on different scales—individual, social, of regional symposia on leprosy and human rights, medical, state—and in different historical, regional held in Rio de Janeiro in 2012. Plus, between 2014 and cultural settings. and 2016, I served as a member of the International But what I consider the main quality that I Leprosy Association’s Council, where I always bring to the post is my experience at the grassroots. advocated for the participation of persons affected by Working in Brazil with one of the most effective leprosy in scientific meetings and health services. FOOTNOTE social movements of persons affected by leprosy, * This September 2007 law MORHAN (Movement for the Reintegration of What do you see as the key steps to ending granted a pension to persons Persons Affected by Hansen Disease), enabled discrimination against persons affected by leprosy? who had been compulsorily me to understand leprosy, its experience and its First, I believe it is necessary to overcome the idea isolated in hospital-colonies governmentality in ways beyond the reach of a that leprosy-related discrimination is a consequence prior to 1987. 2 FTEL Oct 17 • No. 87 of the disease and/or of the fear it might generate. and their family members. This instrument should Stigma and discrimination are socially constructed. be accessible in terms of language to persons They are a product of history. As such, they are affected by leprosy, in order for them to include it contextualized on the one hand and inseparable from in their daily struggle to claim their rights. But it social hierarchy and inequities on the other; that is must be used in accordance with context, which why Paul Farmer speaks of health-related stigma as means that its implementation is not independent the tip of the iceberg. The question is: how to access, of the heterogeneity of the modern state in and change, what lies beneath the surface. different historical and cultural contexts. Another important issue concerns the vulnerability of persons affected by leprosy, which relates to what I mentioned before as structural Stigma and discrimination violence. Persons affected by leprosy tend to be the are socially constructed. most vulnerable members of society. I won’t go deeper into this point here, other than to say we They are a product of history. also have an important instrument to address, in the medium and long term, the issue of vulnerability, I would say we could set short-, medium- and which is the UN Sustainable Development Goals. long-term goals. Regarding the short- and medium- Having said all this, I would still like to mention term goals, it is important to identify in which social the bottom of the iceberg.