GENEVA (16 August 2018) – Politicians must stop misusing the word leprosy to convey harmful stereotypes because its widespread use as a metaphor for all that is loathsome contributes to violations of the human rights of persons affected by leprosy, says a UN expert.
“Within the past two months we have witnessed several such incidents, and just recently there have been two discriminatory remarks by high-level political leaders,” said Alice Cruz, the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.
The two senior politicians who made the reference to leprosy are the Portuguese Prime Minister, António Costa, and the Bangladeshi Shipping Minister, Shajahan Khan. On separate occasions, both used the word leprosy while referring to opposition parties.
“The use of leprosy as a pejorative metaphor derives from long-lasting stigmatising connotations produced by different cultural traditions, social rules and legal frameworks,” Cruz said.
“The historical symbolism of leprosy as being negative is deeply ingrained and triggers use of the word unthinkingly. This erases from history those persons affected by leprosy, and nourishes the structural violence that makes them invisible as citizens.
“Using it as a metaphor leads to wrongful stereotyping that fuels public stigma, everyday discrimination, and impairs the enjoyment of human rights and fundamental freedoms by persons affected and their families,” the Special Rapporteur stressed.
“Leprosy is not a disease of the past. It is still with us now and is deeply associated with social inequities that affect thousands of millions of people worldwide, not only in countries where it is endemic, but also in others where it had already been eliminated but has since re-emerged with foreign-born cases.”
Leprosy is a curable disease and most people (around 95 percent) who are in contact with the disease do not contract it. However, if not detected early and treated, leprosy can cause irreversible damage to the skin, nerves, limbs and eyes, leading to disfigurement, blindness, loss of sensation, chronic wounds and neuropathic pain.
Public stigma is one of the major barriers to early diagnosis and it intersects with other discriminatory factors that include gender, age, race, issues arising from migration, which increase the vulnerability of already disadvantaged groups to physical impairment, disability and social exclusion.
“Stigmatisation, discriminatory laws, legal and public policies, discrimination in the administration of goods and services of the State, and the prevalent gap between law in theory and law in action is an everyday reality for persons affected by leprosy and their family members,” said Cruz.
The Special Rapporteur urged political leaders to note that leprosy strongly affects children and the consequences of harmful stereotypes and public stigma may be exacerbated for the development and wellbeing of children. Even more alarming is the fact that many of these children are denied the right to education because of leprosy which undermines the possibility they may have to break the cycle of discrimination and marginalization, she said.
“The enforcement of equality and non-discrimination for people affected will not be possible without addressing harmful stereotypes and wrongful stereotyping, as clearly stated in the Principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members, endorsed in 2010, at the General Assembly. Such efforts should be embraced as a collective human rights responsibility by all opinion-makers, including political leaders and the media,” urged Cruz.
Ms Alice Cruz, the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, is external Professor at the Law School of University Andina Simón Bolívar – Ecuador. Her doctoral work in sociology focuses on the biosocial dimensions of leprosy and identifies, in countries where leprosy is an endemic neglected disease and in countries where it is an imported and rare disease, the different barriers to access to early diagnosis and to high quality care by persons affected by leprosy, 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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