Arquivos marginais e suas trajetórias subalternas em manicômios e nas prisões / Marginal archives and their subaltern trajectories in psychiatric hospitals and in the prisons / Archivos marginales y sus trayectorias subalternas en manicomios y en las prisiones

Em entrevista à Reciis, Viviane Trindade Borges conta sobre sua trajetória acadêmica norteada pelas práticas, histórias de vida e experiências em instituições de internamento/confinamento ­ como manicômios, leprosários e prisões ­ que ela estuda por meio de arquivos nelas encontrados. Para a pesquisadora, os documentos provenientes desses lugares "de sequestro", como se refere Foucault a essas instituições, dizem respeito a memórias não reivindicadas e a eventos controversos marcados por traumas e violações de direitos humanos. Em suas pesquisas, a historiadora traz à tona trajetórias obscuras, anônimas e trágicas de sujeitos colocados à margem, ao descaso e levados ao esquecimento. Na entrevista, a cientista ressalta a exigência de um posicionamento ético na recuperação de histórias reveladas em arquivos marginais, de modo que não se limite à estigmatização e/ou à exotização; comenta sobre o seu entendimento do conceito de arquivo marginal e a importância da comunicação histórica que permite ativar memórias, interagir e elaborar visões sobre o passado que ainda reverberam no presente. Viviane Trindade Borges é Professora Associada da Universidade do Estado de Santa Catarina (Udesc)

In an interview given to Reciis, Viviane Trindade Borges tells us about her academic trajetory guided by her practices, life histories and experiences in places where minors are not allowed to leave for a period of time and in others confinement institutions ­ as psychiatric hospitals, lazar houses and prisons ­ which she studies by means of archives found in them. For the researcher, the documents coming from the "kidnapping institutions", as Foucault refers to these places, relate to unclaimed memories and to controversial events characterized by traumas and violations of humain rights. Through her researches, the historian brings up gloomy, anonymous, tragic and marginal trajectories of subjects placed on the margins of the society, treated with disregard and led to the forgetfulness. In the interview, the scientist emphasizes the ethical behaviour required for the recovery of stories revealed in marginal archives, so that it is not limited to stigmatisation and/or exoticisation; she comments on her understanding of the concept of marginal archives and on the importance of historical communication that enables activating memories, interacting and elaborating images about the past that stil reverberate in present. Viviane Trindade Borges is Associate Professor at UDESC ­ Universidade do Estado de Santa Catarina (Santa Catarina State University)

En una entrevista concedida a la Reciis, Viviane Trindade Borges nos cuenta acerca de su trayectoria académica guiada por sus prácticas, historias de vida y experiencias en instituciones de encierro/confinamiento ­ como manicomios, lazaretos y prisiones ­ que estudia a través de archivos encontrados en ellas. Para la investigadora, los documentos provenientes de estas "instituciones de secuestro", como Focault se refiere a esos lugares, son concernientes a memorias no reivindicadas y a eventos controvertidos caracterizados por traumas y violaciones de derechos humanos. En sus investigaciones, la historiadora descubre trayectorias oscuras, anónimas, trágicas y marginales de sujetos puestos al margen, tratados con desprecio y entregues al olvido. En la entrevista, la científica resalta el deber de una posición ética en la recuperación de las historias reveladas en archivos marginales, para que no se limite a la estigmatización y/o a la exotización; comenta su forma de entender el concepto de archivo marginal y la importancia de la comunicación histórica que permite activar memorias, interactuar y elaborar visiones sobre el pasado que aún resuenan en el presente. Viviane Trindade Borges es Profesora Asociada en la UDESC ­ Universidade do Estado de Santa Catarina (Universidad del estado de Santa Catarina)

Lessons From the Wrong Isolation Policy Violating Human Rights for Leprosy in Japan.

Leprosy, caused by Mycobacterium leprae , is one of the so-called "neglected tropical diseases" and is found today mainly in Africa, Asia and South America. Although oral antibiotics capable of curing leprosy are now available, the disease is still misunderstood and feared by the public because of the unsightly deformities that it may cause. In Japan, leprosy has been present since the 8th century and was regarded as a hereditary disease; people avoided marrying into a family with a member affected by leprosy. At the beginning of the 20th century, the Japanese government instituted a policy of lifetime quarantine of individuals with leprosy to eradicate the disease, thereby purposely disseminating negative and inaccurate perceptions of the disease as deadly and highly contagious and fostering a long-lasting prejudice among the general public towards those affected. Even after effective treatments became available, the government continued quarantining patients until 1996. The government has since then apologized to the patients for violating their constitutionally guaranteed human rights. Children with leprosy and children born to parents with leprosy were also victims of the policy and prejudice created. We describe herein the history of leprosy-related policies in Japan to emphasize the importance of balancing public health policy with human rights.

Initiatives to address leprosy as a human rights issue through the mandate of UN Special Rapporteur: Achievements and challenges.

Leprosy, or Hansen's disease, is one of the oldest infectious diseases in the world. It has long been associated with stigma and discrimination, but only in recent years has this aspect been formally recognized by the international community as a human rights issue. The UN Human Rights Council first adopted a resolution on leprosy in 2008, and this was later followed by a UN General Assembly resolution in 2010. Nonbinding principle and guidelines on elimination of discrimination against persons affected by leprosy and their family members accompanied the 2010 resolution, but these have yet to be fully implemented. In 2017, the Human Rights Council appointed a Special Rapporteur on leprosy to investigate the extent to which the principles and guidelines have been implemented, and her term was extended for a further 3 years in 2020. Considering the proper implementation of the principles and guidelines to be key to eliminating the discrimination that persons affected by leprosy and their families face in various parts of the world, this paper looks at the contribution the Special Rapporteur can make. Based on an assessment of her activities to date, it concludes that the Special Rapporteur has actively worked to build networks with persons affected by leprosy and related organizations and gain their trust, but has faced challenges in organizing official country visits. It goes on to analyze what sort of legacy the Special Rapporteur should aim to leave behind after completing her second term and how she can go about doing so in the time remaining. To this end, it makes 5 suggestions: (1) gather information systematically on the actual situation of discrimination; (2) compile a collection of success stories; (3) ensure that there is consistency between legally binding international covenants and treaties and the principles and guidelines; (4) present proposals for concrete actions that can be taken after the Special Rapporteur's second term ends; and (5) initiate a feasibility study on creating an "index" and "indicators" to measure the current status of stigma and discrimination and the extent to which the principles and guidelines have been implemented.

Um guia para os direitos das pessoas atingidas pela hanseníase

Um material focado em divulgar os direitos já garantidos às pessoas acometidas por hanseníase, e que, muitas vezes, não são tão conhecidos, e também com informações sobre como reivindicá-los. Esta é a mais nova Cartilha de Direitos Humanos das Pessoas Afetadas pela Hanseníase lançada pelo Morhan, com apoio da Sasakawa Health Foundation.

United Nations Special Rapporteur on the Elimination of Discrimination against Persons Affected by Leprosy and their Family Members, Alice Cruz - Visit Brazil

Relatório da Relatora Especial das Nações Unidas, Alice Cruz, para a Eliminação da Discriminação contra as Pessoas Afetadas pela Hanseníase e seus Familiares. Brasília, 14 Maio de 2019. Disponível nos idiomas inglês e português.

Princípio da não discriminação e não estigmatização: reflexões sobre hanseníase / The principle of non-discrimination and non-stigmatization: reflections on leprosy / Principio de la no discriminación y de la no estigmatización: reflexiones sobre la lepra

Resumo Este artigo baseia-se no artigo 11 da Declaração Universal sobre Bioética e Direitos Humanos , que trata do princípio de não discriminação e não estigmatização. O texto discorre sobre os conceitos de discriminação, estigma e violência estrutural, pensando-os no caso específico da hanseníase, sob a perspectiva da bioética e dos direitos humanos. A pesquisa considera ainda o fato de que o Brasil é o segundo país mais afetado pela doença. Como conclusão, destaca-se a importância da referida declaração como instrumento teórico-prático para enfrentar a exclusão social de pessoas nessa situação.

Abstract This article is based on Article 11 of the Universal Declaration on Bioethics and Human Rights, which addresses the principle of non-discrimination and non-stigmatization. The paper discusses the concepts of discrimination, stigma and structural violence, analyzing the specific case of leprosy from the viewpoint of bioethics and human rights. The research also considers the fact that Brazil is the second country most affected by the disease. The conclusion stresses the importance of this declaration as a theoretical and practical instrument to address the social exclusion of people in this situation.

Resumen Este artículo se basa en el artículo 11 de la Declaración Universal sobre la Bioética y los Derechos Humanos , que trata del principio de la no discriminación y no estigmatización. El texto analiza los conceptos de discriminación, estigma y violencia estructural, teniéndolos en cuenta por el caso específico de la lepra, bajo la perspectiva de la bioética y los derechos humanos. La investigación también considera el hecho de que Brasil es el segundo país más afectado por la enfermedad. Como conclusión, se destaca la importancia de esta declaración como instrumento teórico-práctico para abordar la exclusión social de las personas en esta situación.

Benefícios previdenciários dos indivíduos acometidos por hanseníase: sujeitos, direitos e trajetórias / Social security benefits of individuals affected by leprosy: subjects, rights and trajectories

A pesquisa traz subsídios para compreender a relação entre incapacidade física e benefício previdenciário centrada na realidade vivenciada pelos indivíduos afetados pela doença. Por meio da compreensão da trajetória desses sujeitos na busca de benefícios previdenciários, foi possível identificar as barreiras existentes no pleitear desses direitos. Do mesmo modo, aponta estratégias de enfrentamento da vulnerabilidade social que permeiam a doença no que tange à proteção e ao respeito dos direitos previdenciários dos indivíduos acometidos por hanseníase. Ademais, destaca-se que a importância do presente estudo não se limita apenas aos indivíduos atingidos pela afecção, uma vez que poderá contribuir para a organização e aprimoramento dos serviços de saúde e dos órgãos responsáveis pela previdência e assistência social no município e em outras localidades. (AU)

[Leprosy and human rights: trends in Japan and in the world].

Leprosy, or Hansen's disease, has long been regarded as an incurable and dreadful contagious disease. The patients have been forcefully hospitalized and deprived of many basic human rights. Their family members have often been discriminated against due to stigma associated with this disease. Soon after the Second World War, a specific remedy called "multi-drug therapy" (MDT) was discovered and leprosy became a relatively easily curable disease. Despite this medical development, it took time to change the policy and legislation of forceful hospitalization of leprosy patients. The stigma surrounding leprosy and consequent discrimination have continued. In Japan, it was only in 1996 that the legislation requiring forceful hospitalization of leprosy patients was repealed. The Government decided to provide remedies to the former patients who had suffered from this policy. At the United Nations, the General Assembly adopted a resolution to eradicate discrimination against persons affected by leprosy and their family members. It is hoped that discrimination associated with Hansen's disease will soon be overcome by the efforts of all concerned, particularly doctors and nurses who are specialists of this disease.

[Leprosy--a stigma in the 21st century]. / Lepra--stigma a XXI. században.

For the initiation of the French journalist Raoul Follereau in 1954 the UNO inaugurated the Leprosy Day (Martyr's Day) that is celebrated on the last Sunday of January every year. Although the bacterium that causes leprosy was isolated by the Norwegian scientist Gerhard Henrik Armauer Hansen in 1873 and from 1982 this disease can be cured with a special pharmaceutical complex, still 219.826 new leprous are detected on Earth every year, according to the data published in August, 2010 by WHO-experts. Ancient Chinese and Hindu source-strings from 600 B. C. are referring to leprosy, however, the disease was imported by the army of Alexander the Great from India around 327-326 B. C. Even the Old and the New Testament from the Holy Bible are mentioning leprosy in several details. During the Middle Ages the Military and Hospitaller Order of St. Lazarus of Jerusalem, established in the Holy Land in 72 A. D., did pioneer work in nursing leprous. In the process of time the medical attendance concerning leprous was organized in special hospitals called "leprosoriums" built on river-banks. Special office and even services were organized for the treatment and isolation of the people infected. Although medical science has prevailed against leprosy, and almost simultaneously even jurisprudence defended the patients' rights via legislation, still mankind can regrettably not get rid of this disease that stigmatizes seriously.

The participatory development of international guidelines for CBR.

PURPOSE: The CBR Guidelines are being developed by UN Agencies and civil society groups including disabled people's organisations (DPO). The aim of the CBR guidelines is to enhance the quality of life of people with disabilities including those affected by leprosy. Strong linkages between leprosy programmes and CBR will optimise the benefit of medical care and ensure leprosy-affected people access all relevant services that promote inclusion and participation. BACKGROUND: The World Health Organisation introduced the concept Community Based Rehabilitation (CBR) in the early 1980s. CBR was designed to enhance the quality of life for people with disabilities through community initiatives. To facilitate this, WHO published a CBR Manual 'Training in the community for people with disabilities' in 1989. Since then there have been many developments within and outside the disability sector. Based on these global developments and as a result of stakeholder consultation, ILO, UNESCO and WHO updated the CBR Joint Position Paper (2004) and restructured CBR as a strategy for rehabilitation, equalisation of opportunities, poverty reduction and social inclusion of people with disabilities. The purpose of this Joint Position Paper was to describe and support the concept of CBR as it is evolving, with an emphasis on human rights and a call for action against poverty. The Convention on the Rights of Persons with Disabilities aims to ensure that they enjoy human rights on an equal basis with others. Guidelines on how to implement CBR respond to the demands created by the publication of the Joint Position Paper and The Convention on the Rights of Persons with Disabilities. RESULTS: The CBR Guidelines are being developed by three UN agencies: WHO, ILO and UNESCO. It is being actively supported by 13 International Non Governmental Organisations (NGO) including Disabled People's Organisations (DPO). Over 150 experts from across the globe have contributed to the draft guidelines which are being field tested in 25 countries. The guidelines have five major components: health, education, livelihood, social and empowerment. Beside these five components, the Guidelines also focus on management of some special scenarios including CBR and HIV/AIDS, CBR and leprosy, CBR and mental health and CBR in crisis situations. The CBR guidelines also underline that people with leprosy-related disability are seen as members of the disability community in the wider context given the shared experiences and challenges. CONCLUSIONS: The CBR guidelines are an important step forward in promoting CBR as a community based inclusive development strategy. The guidelines focus on meeting basic needs, reducing poverty, accessing benefits of mainstream developmental initiatives, inclusive community and empowering people with disabilities and their families. It also focuses on implementing the Convention on the Rights of Persons with Disabilities using community-based initiatives. People with leprosy are often neglected by traditional CBR programmes. These guidelines make the case for including people with leprosy in CBR programmes and in the community.