A/HRC/44/46/Add.1
members and community members in the reunion process; and the establishment and
management of a referral network of relevant professionals as required by concerned
individuals. The Special Rapporteur adds peer counselling to this package.
Intersection of Hansen’s disease with ageing
B.
49.
The persons affected by Hansen’s disease in Japan are an ageing population.
Moreover, many of their family members are also ageing. This calls for an approach that
simultaneously addresses the psychosocial effects of multiple discrimination and violations
throughout life (particularly the current absence of family ties and the internalization of
stigmatization), physical impairments and disabilities related both to Hansen’s disease and
to ageing. It also calls for acknowledgment that the ageing process can be different for
women and men and that, therefore, gender-based approaches that can give visibility to
women’s stories, experiences and needs are a fundamental part of any rights-based policy
on ageing. Including a gender dimension in policies for guaranteeing the rights of older
persons means, among other things, taking the following measures, which also fit the
reality of women affected by Hansen’s disease: building friendly environments for older
women, especially those related to health care; recognizing the role of ageing women as
caregivers and providing support for caregivers as part of community-based primary healthcare services; training relevant groups of health-care workers to enable them to respond to
the health-care needs of ageing women, and training older women themselves to promote
self-care; promoting the involvement of older women in research that addresses their
concerns; developing appropriate and relevant indicators of older women’s health;
educating health-care providers to recognize and address the specific needs of older women;
and supporting the participation of older women in educational opportunities for sharing
personal experiences, histories and accumulated observations. 26
50.
Targeted strategies for each of the aforementioned dimensions (ageing, gender,
psychosocial and physical disabilities) should be developed in closed consultation with the
target group and put in place using a holistic approach. Such measures should be accessible
to all, including those living in and outside the sanatoriums, and should be solidly grounded
on the rights to living, and not just surviving, to autonomy and independent living, to longterm care and palliative care, as well as to freedom of expression on health matters.
51.
The Special Rapporteur heard many testimonies that indicate that a better quality of
health care is being provided in the sanatoriums than outside, and that some persons
affected by Hansen’s disease have chosen to go back to those facilities in the face of more
limited attention to their needs at the community level. The Special Rapporteur also heard
testimonies that affirm that, aside from the different levels of quality of care in and outside
the sanatoriums, the main reason why some people go back is their fear of having their
medical history on Hansen’s disease disclosed at the community and the family levels.
Moreover, many of the testimonies that were shared with the Special Rapporteur point to
the fact that, in order not to reveal their medical records, many of these individuals
voluntarily leave everything behind when returning to the sanatoriums, including family
relationships and property.
52.
The Special Rapporteur also heard concerns from health professionals about what
they regarded as the low quality of some of the health-care workforce at the sanatoriums.
Although residents are guaranteed medical services free of charge for life, the monetary and
professional incentives for working at the sanatoriums might not be enough to ensure a
high-quality health-care workforce. Moreover, some health professionals shared great
concerns about what they referred to as subtle forms of physical and mental abuse
perpetrated by health-care workers against the elderly residents. As it remains undetected
and therefore unpunished, it can escalate into more serious forms of abuse. The Special
Rapporteur recalls that abuse of older persons includes both harmful actions and lack of
action,27 and that older persons affected by Hansen’s disease are a vulnerable group that is
entitled to special measures, if needed, to guarantee their human rights. 28
26
27
28
14
See www.un.org/womenwatch/daw/csw/aging.htm.
Ibid.
Committee on the Elimination of Discrimination against Women, general recommendation No. 25
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