A/HRC/44/46/Add.2
2.
Groups in vulnerable situations
Women affected by Hansen’s disease
46.
The Special Rapporteur acknowledges the fact that in Brazil, from a merely
epidemiological perspective, it can take more time for men to be diagnosed than women,
and men may even be infected in larger numbers. Many men may experience Hansen’s
disease as a stigmatizing condition that affects their physical and social performance with
regard to stereotypes of masculinity, causing feelings of social inadequacy and depression.
47.
Nonetheless, strictly in accordance with the testimonies shared with the Special
Rapporteur during her visit, the intersection 25 of gender stereotypes – on the role of women
and their social positioning – with harmful stereotypes related to Hansen’s disease increases
the burden of Hansen’s disease in women’s lives and makes them more vulnerable to
discrimination and violence. This is also corroborated by several independent studies on the
matter.26
48.
During interviews and group meetings in Rio de Janeiro, on Combu Island (a
vulnerable community in the State of Pará), Marituba and in a large meeting in Belém with
a group of women from MORHAN, several women shared experiences of the same
structural pattern of interpersonal discrimination. The pattern is manifested especially in the
household and within the family, in some cases evolving into psychological and physical
violence, mainly perpetrated by spouses. It is also manifested in work relations, mainly in
the case of unqualified domestic workers,27 with job losses which are exacerbated by the
fact that, according to these women, welfare benefits are insufficient and do not guarantee
them a minimum standard of living.
49.
Such experiences cause severe pain and suffering, which can result in a deterioration
of mental health and lead to depression, self-isolation and suicidal thoughts. Moreover,
apart from a few cases of discrimination against women at the hands of health service
personnel on the grounds of the intersection between gender and Hansen’s disease, the
majority of the suffering described to the Special Rapporteur relates to one of two scenarios.
Firstly, the Special Rapporteur heard reports of cases of what she has already identified as
the perverse consequences of the mercantilization of health (A/HRC/41/47), which are at
the root of a substantive number of the difficulties associated with the medical treatment of
the disease, such as neuropathic pain, Hansen’s disease reactions and the iatrogenic effects
of some of the drugs employed in treating the disease, such as clofazimine, which can
produce changes in skin colour, becoming a stigmatizing mark of the disease for these
women, and thalidomide, which affects sexual and reproductive health. Second, she heard
reports of stereotypes about the appearance of the female body, which relate to a global
somatic culture that objectifies women’s bodies.
50.
Bodily changes associated with Hansen’s disease cause feelings of shame and loss
of self-esteem that can result in self-isolation and reluctance to participate in community
25
26
27
On the concept of intersectionality, see Patricia Hill Collins, Black feminist thought: knowledge,
consciousness, and the politics of empowerment (Boston, Unwin Hyman, 1990) and Avtar Brah and
Ann Phoenix, “Ain’t I a woman? Revisiting intersectionality”, Journal of International Women’s
Studies, vol. 5, No. 3 (2004). On the use of the term “intersectionality” with regard to discrimination
on the grounds of Hansen’s disease, see A/HRC/38/42.
C.M. Varkevisser and others, “Gender and leprosy: case studies in Indonesia, Nigeria, Nepal and
Brazil”, Leprosy Review, vol. 80, No. 1 (2009); Marcela Gonçalves and others, “Trabalho e
hanseníase: as mulheres em suas dores, lutas e labutas”, Revista brasileira de enfermagem, vol. 71,
No. 1 (2018); Lidiane Mara de Ávila e Silva and Reni Aparecida Barsaglini, “‘A reação é o mais
difícil, é pior que hanseníase’: contradições e ambiguidades na experiência de mulheres com reações
hansênicas”, Physis, vol. 28, No. 4 (2019); Maria Helena Pessini de Oliveira and Geraldo Romanelli,
“Os efeitos da hanseníase em homens e mulheres: um estudo de gênero”, Cadernos de Saúde Pública,
vol. 14, No. 1 (1998); Adriana Kelly Santos, Ana Paula Goulart Ribeiro and Simone Monteiro,
“Hanseníase e práticas da comunicação: estudo de recepção de materiais educativos em um serviço de
saúde no Rio de Janeiro”, Interface – Comunicação Saúde Educação, vol. 16, No. 4 (2012); Leilane
Dias Santana and others, “Significado da doença para mulheres com hanseníase”, Revista de
Enfermagem da UFSM, vol. 7, No. 1 (2017).
Committee on Economic, Social and Cultural Rights, general comment No. 23 (2016) on the right to
just and favourable conditions of work, para. 47.
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