A/HRC/41/47
persistently silenced by structural disadvantage, low participation in the public sphere and
generalized lack of access to information.
50.
The Special Rapporteur undertook an online and individual consultation with
persons affected by leprosy, their family members, health workers and non-governmental
organization (NGO) personnel. A total of 575 responses were received from the following
eight high-burden countries: Brazil, Ethiopia, India, Indonesia, Nepal, Myanmar, Nigeria
and the Philippines. Responses were also received from Benin, Cabo Verde, China,
Colombia, France, Japan, Mexico, the Netherlands, New Zealand, Paraguay, Switzerland,
Timor-Leste, Trinidad and Tobago, the United Kingdom of Great Britain and Northern
Ireland, the United States of America and Venezuela. The majority of the responses came
from India, Brazil and Myanmar.
51.
Women affected by leprosy provided 31.9 per cent of the responses, men affected by
leprosy 33.6 per cent, female family members of persons affected 9.8 per cent, male family
members of persons affected 8 per cent and other categories, such as health and NGO
workers, 16.7 per cent; 72 per cent of the respondents live in a rural area and the majority
do not take part in any organization. Due to the limitation of available methods and
required ethical procedures for consulting with children, it was not possible to consult with
children affected by leprosy, as would have been desirable.
52.
The data received were not broken down into demographic variables such as
ethnicity and/or race, age, disability or socioeconomic conditions, since the consultation
merely intended to provide a preliminary assessment able to identify generic areas of
concern. Confidentiality was strictly ensured during data collection and processing.
Collected data point to ongoing discrimination against women and children affected by
leprosy (including female and underage family members) and allow for identifying the
main areas where the human rights of both groups are jeopardized, unfulfilled and violated.
1.
Harmful stereotypes and wrongful stereotyping
53.
When asked about the traditional beliefs regarding leprosy, the majority of responses
pointed to the persistence of religious beliefs (grounded in different religious traditions)
that classify leprosy as the result of sins committed in current or past lives by the affected
person or by the affected person’s ancestors; God’s punishment on the individual and/or the
family; a curse pronounced by ancestors; sorcery; possession by evil spirits; and
punishment for adultery and/or sexual promiscuity. Leprosy is also attributed to a particular
race or caste and to women. Finally, erroneous misconceptions produced by late nineteenth
century “modern” medicine, which held that leprosy was a hereditary disease or a highly
contagious one transmitted by touch and without a cure, still prevail. Regarding
discriminatory language, 52.3 per cent of the respondents confirmed that it is commonly
employed.
54.
When asked about the traditional practices regarding leprosy, responses evinced how
harmful stereotypes about leprosy can lead to informal segregation and widespread
exclusion by treating individuals as untouchable; segregating individuals within the
household and also prohibiting them from leaving the house; divorce on the grounds of
leprosy and prohibiting marriage with an affected person or any of his/her family members;
barring individuals from participating in religious and community activities as well as in
economic transactions; dismissing individuals from their jobs; pushing individuals into
begging; and banishing individuals from the community. In fact, 42.7 per cent of the
respondents confirmed that affected persons face rejection and/or segregation from their
families and communities.
55.
When asked if these traditional beliefs have a more adverse impact on women
affected by leprosy than on men affected by leprosy, 45.5 per cent of the responses
confirmed that this is the case, citing the following practices: driving out from the
household without financial resources to ensure survival (which is at the root of a
considerable number of affected women begging and/or selling sex); abuse within the
household as a result of women experiencing difficulties in performing the role expected of
them (due to pain and other physical impairments caused by leprosy); and lack of resources
to fight against discrimination (including lack of access to justice).
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