UN rights expert urges action to end “civil death” of persons affected by leprosy
19 June 2018
GENEVA (19 June 2018) – States must act now to stop the widespread, systemic, multi-layered and institutionalised discrimination suffered by persons affected by leprosy and their family members, a UN human rights expert has said.
“States not only have a duty, but also an obligation to address the long-standing discrimination against persons affected by leprosy,” said Alice Cruz, the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.
“Persons affected by leprosy and their families have been subjected to serious human rights violations. They have been denied their dignity and their basic human rights; subjected to stigmatising language, segregation, separation from their families, and separation within the household, even from their children.
“They have been denied care, as well as any means of subsistence; denied property ownership and a place to live; shut out of education; prevented from marrying or having children, and have had their freedom of movement restricted,” the UN expert added.
“Persons affected by leprosy and their families have also been denied the right to participate in public and political life, and have been subjected to physical and psychological abuses and violence. Many have faced compulsory internment, forced sterilisation, institutionalised silencing and invisibility, and erasure from history. They have even been denied any acknowledgement of their humanity,” said Cruz.
“The structural violence and denial of rights imposed upon those affected have led some of them to experience what might be called a ‘civil death’.
“Stigmatisation and discrimination remains major obstacles to the elimination of leprosy in many parts of the world, and addressing one without the other will only force countless women, men and children to face endless violence, abuse, discrimination and exclusion in their households, communities and in legislative and other institutions,” the Special Rapporteur stressed.
Cruz, making her first presentation to the UN Human Rights Council in Geneva, expressed concern that, despite progress towards the global elimination of leprosy, a large number of new cases continued to be reported.
In 2016 alone, there were 214,783 new cases. The figure may not represent a comprehensive picture as many cases go unreported. Leprosy is curable with multidrug therapy and if detected early physical impairments long associated with it can be prevented.
“Unfortunately, those affected by leprosy continue to experience severe impairments and the disability produced by social discrimination, which also impacts on their families. Given the cross-cutting nature of the discrimination, leprosy should become a symbol of inclusiveness and reinforcement of human rights for the accomplishment of the UN’s Sustainable Development Goals,” the expert said.
Cruz also said addressing the long-standing issues of discrimination, social exclusion and invisibility that blight so many lives should be a prerequisite to ensuring that no one is left behind in the implementation of the 2030 Agenda.
“States should not only repeal the discriminatory laws that still exist in more than 20 countries, but also address other factors such as structural barriers to rights, as well as religious and ideological beliefs, cultural practices and misconceptions that perpetuate such discrimination,” she added.
The Special Rapporteur is urging States to implement effectively the principles and guidelines for the elimination of discrimination against people affected by leprosy and their family members.
Ms Alice Cruz (Portugal) was appointed in November 2017 as the first UN Special Rapporteur on the elimination of discrimination of persons affected by leprosy and their family members. She is an External Professor at the Law School of University Andina Simón Bolívar in Ecuador. Ms Cruz has conducted fieldwork in Portugal, Brazil, South Africa, Bolivia and Ecuador, and has researched and written on the subject of eliminating leprosy and the stigma attached to it. Her doctoral work in sociology focuses on the biosocial dimensions of leprosy and identifies the different barriers to access to early diagnosis and to high quality care by those affected, as well as their social, economic, familiar and personal life conditions.
The Special Rapporteurs are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council’s independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures’ experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent from any government or organization and serve in their individual capacity.
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