A/HRC/38/42 III. Long path from segregation to human rights A. Thousands of years of human rights abuses and violations 21. Leprosy has been associated with the abuse and violation of the human rights of countless women, men and children for thousands of years. Yet, its recognition as a human rights violation is a recent development. 22. Some may argue that such violations resulted from the fact that, for a long time, leprosy was an incurable, disfiguring and disabling disease that spurred an automatic response of fear and rejection. 23. However, this type of functionalist approach does not acknowledge that many societies did not consider leprosy as a transmissible disease. 16 Moreover, in the late nineteenth century, when the theory of contagion became the paradigmatic explanatory model for leprosy’s transmission, it lacked any scientific evidence to back it up. And yet, persons affected by leprosy were systematically labelled as shameful and set apart. Hence, the functionalist approach always ends up by blaming the persons who are stigmatized and discriminated against, while failing to question the persons who stigmatize and discriminate. 24. Religious and ideological beliefs, cultural practices and misconceptions are the attributing factors that supported the discrimination of persons affected by leprosy in different historical periods and regions. Certain cultural norms have provided favourable conditions for leprosy to be regarded as shameful and harmful to the social order. 17 25. Leprosy came to embody what was socially prescribed as shameful and disrupting, and was thus rendered something beyond a mere disease. It became a symbol, a powerful metaphor, for everything that should be kept apart, whether it was attributed to punishment for sinful conduct,18 unregulated behaviour,19 past offences20 and socially constructed ideas of racial inferiority,21 among others. 26. Persons affected by leprosy have historically been deprived of their civic, political, economic, social and cultural rights. Women, men and children affected by leprosy were, and continue to be in many contexts, denied not only their dignity, but also an acknowledgement of their humanity. It is not a coincidence that it is commonly said that persons affected by leprosy experience a civil death. They have been consistently subjected to: stigmatizing language; segregation; separation from their families and within the household; separation from their children; denial of care; denial of the means of subsistence; denial of a place to live; denial of education; denial of the right to own property; impediments to marry; impediments to have children; restrictions on their freedom of movement; denial of their right to participate in community, public and political life; physical and psychological abuse and violence; compulsory internment; forced sterilization; institutionalized silencing and invisibility; and removal from history. 27. The use of leprosy as a metaphor bedevils us in public and private spaces. Its stigmatizing effects restrain the social participation of not only those affected by leprosy, 16 17 18 19 20 21 6 Silathan Sermrittirong and Wim H. Van Brakel, “Stigma in leprosy: concepts, causes and determinants”, Leprosy Review, vol. 85, No. 1 (2014), pp. 36–47. Mary Douglas, “Witchcraft and leprosy: two strategies of exclusion”, Man, vol. 26 (1991), pp. 723– 736. Gilbert Lewis, “A lesson from Leviticus: leprosy”, Man, vol. 22, No. 4 (1987), pp. 593–612. Emilio M. Férnandez, Fantasmas de la sociedad medieval: enfermedad, peste, muerte (Valladolid, University of Valladolid, 2004). Sermrittirong and Van Brakel, “Stigma in leprosy”. Ron Edmond, Leprosy and Empire: A Medical and Cultural History (Cambridge, Cambridge University Press, 2006); Zachary Gussow and George S. Tracy, “The use of archival materials in the analysis and interpretation of field data: a case study in the institutionalization of the myth of leprosy as ‘leper’”, American Anthropologist, vol. 73, No. 3 (1971), pp. 695–709, and “The phenomenon of leprosy stigma in the continental United States”, Leprosy Review, vol. 63 (1972), pp. 85–93.