A/HRC/41/47
individuals (A/HRC/38/42). 35 This particular group suffered from alienation from their
families without consent, imprisonment and other inhumane acts such as torture and
physical, sexual and psychological violence within the places built for their confinement,
and many live today with severe psychosocial disabilities as well as with physical
impairments that resulted from the extreme violence to which they were subjected in such
institutions. Their experience shows how institutional and interpersonal violence intersect,
generating harmful synergies.
62.
The intersection of leprosy with other social conditions was preliminarily mapped on
the basis of a question on which categories enhance women’s vulnerability to
discrimination on the grounds of leprosy. The question allowed each respondent to choose
more than one option. Poverty was chosen 412 times, religious affiliation 235, ethnic
affiliation 230, marital status 209, race 192 and age 159. With respect to children affected
by leprosy, poverty was chosen 364 times, religious affiliation 230, ethnic affiliation 210,
gender 191 and race 174. Undoubtedly, poverty seems to be the category that most strongly
intersects with leprosy in terms of a discrimination outcome for both groups, highlighting
the intersection of leprosy and social iniquities.
63.
Answers to questions on the traditional role attributed to women, women’s work and
economic independence varied from region to region, reflecting different cultural patterns
and what could be called a “geopolitics of patriarchy”. Since the Special Rapporteur only
aimed at providing a preliminary assessment, the information gathered is presented in a
generic way. Household activities, caretaking of family members and agricultural work
predominate in the responses to the question on the role attributed to women, also
signalling that women affected by leprosy mainly undertake unpaid care and household
work, which greatly contributes to the feminization of poverty and gender inequality
(A/68/293).
64.
However, collected data also suggest a tendency towards an increase in the double
working day for women affected by leprosy in all regions. By the same token, responses
consistently pointed to unreliable casual labour, low wages and unsafe and degrading
working conditions. In fact, most responses indicated that work falls mainly outside the
formal economy, without an entitlement to social security benefits.
65.
Notwithstanding, when asked if the work performed by women provides for
independent means of subsistence, 47.1 per cent of the respondents answered no, 38.4 per
cent answered yes and 14.5 per cent declared that they did not know. In fact, 65.9 per cent
of the respondents affirmed that affected women are not economically independent and
identify the family as the main source of income, along with begging, government annuities
and international NGOs.
66.
Particularly relevant to the well-being of women affected by leprosy (especially
when considering that for the majority of women affected by leprosy daily activities
encompass physical labour that can have an adverse impact on the physical impairments
caused by leprosy) was the question on access to adequate utensils (for instance, cooking
utensils that can prevent women who have lost sensation from being burned and in
consequence develop wounds that can ulcerate and lead to permanent trauma), rest periods
and self-care practices that allow for preventing physical impairments, as well as worsening
them. Most responses pointed to an intersection with class, declaring that very few women
have the means to prevent physical impairments and its negative evolution, which
considerably hinders their enjoyment of the highest attainable standard of health and wellbeing.36
35
36
12
See also J. Robertson, “Leprosy’s untainted child”, Bulletin of the History of Medicine, vol. 92, No. 2
(2018), pp. 261–286; G. Maricato and A.M.S. Custódio, “Sequestro e negligência como política de
Estado: experiências da segunda geração de atingidos pela hanseníase”, Saúde em Redes, vol. 4, No. 1
(2018), pp. 153–168; and F. Othani, The Walls Crumble: The Emancipation of Persons Affected by
Hansen’s Disease in Japan (Tokyo, Tofy Kyokai Association, 1998).
The Special Rapporteur adopts in her work the concept of the right to health as enshrined in article 25
of the Universal Declaration of Human Rights and deepened by general comment No. 14 (2000) on
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