A/HRC/38/42
analysis of vulnerability must distinguish between the conditions that diminish an
individual’s or a group’s capacity to cope with hazard, from the multiple and creative ways
that individuals and groups usually develop to resist it, despite their very limited options
and resources.
74.
Persons may live in conditions of vulnerability, but they themselves should not be
considered as lacking agency in facing those same conditions. In fact, policies for tackling
vulnerability should take into consideration the ways through which individuals and groups
face vulnerability.
75.
Having said this, and reaffirming that the impact of leprosy and leprosy-related
discrimination is proportional to the degree of vulnerability experienced by persons affected,
it is mandatory to develop tools to assess vulnerability and the means to tackle it.
76.
One important tool is the framework provided by the Sustainable Development
Goals. Such a framework may be of great help in developing an intersectoral governance
that might avoid duplicity of actions, as well as enhance efficiency, effectiveness and
efficacy. In fact, many of the areas of action outlined by the Goals are key in tackling
leprosy-related vulnerability and discrimination, such as poverty, hunger, good health and
well-being, education, gender, clean water and sanitation, decent work and economic
growth, reduced inequalities, and sustainable cities and communities.
77.
Intersectorality is key in decreasing vulnerability to leprosy and leprosy-related
discrimination. Moreover, in order to strengthen the intersectoral approach, the
implementation of the principles and guidelines should be allied with the 2030 Agenda for
Sustainable Development.
78.
Historically, leprosy became a symbol for exclusion. Recognition by the United
Nations of leprosy as a human rights issue has, however, closed that dark chapter of history.
Such recognition will advocate for inclusiveness and participation. Being a cross-cutting
issue, leprosy can be used as a model for the accomplishment of sustainable development
and as a symbol of the reinforcement of human rights. Notably, the international
community, civil society and other relevant stakeholders have obligations to keep
individuals affected by leprosy and their family members high on the 2030 Agenda. If, by
2030, persons affected by leprosy and their family members have not been left behind, the
long-standing issues of social exclusion and invisibility that affect a substantive segment of
the population will have been addressed.
Participation and lay expertise
79.
Participation is key for the long-term elimination of leprosy-related discrimination
and for a sustainable inclusion of the affected persons and their family members.
80.
Participation is multidimensional and includes the elements of representative
democracy (the right to vote, to be elected and to hold public office), participatory
democracy (elaboration, execution, monitoring and accountability in policymaking), nongovernmental organizations and communities (decision-making) and epistemic
communities (participation in the production of knowledge), among others.
81.
Participation is thus not restricted to the macrospace of the State. It is also
interrelated with all human rights, since it is not possible to participate in society at large
without enjoying the rights to freedom, work, health, education, a dignified life, freedom of
expression and information, among others. Without the fulfilment of human rights,
participation becomes a mere formality. In turn, without participation, human rights
becomes questionable.
82.
For the present purposes, participation is understood as: (a) equal opportunities to
participate and enjoy civil, political, economic, social and cultural rights and, when
applicable, collective rights;52 (b) the right to participate in all decision-making processes
that might have an impact on the lives of persons affected by leprosy and their family
52
For instance, the right to memory is liable to be treated as a collective right of persons affected by
leprosy, who were forcibly segregated from their families, communities and society.
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