A/HRC/44/46
cooperation between the health-care, welfare and education systems, in order to prevent
discriminatory attitudes within the education system. The involvement of parents or
caregivers and the community and the participation of children affected and the children of
persons affected, in accordance with their evolving capacities, should also be guaranteed
for the creation of an inclusive and enabling environment.
61.
The enforcement of the right to education by persons affected and their family
members should be grounded in the elimination of discrimination, the availability of
education services, the accessibility of all levels of education, the promotion of training and
skills development opportunities and reasonable accommodation. To that end, strategies
grounded in the specific context and needs must be developed in close consultation with
persons affected and their families and should consider: ensuring that children affected by
leprosy participate on an equal basis with other children in education services and
recreational, leisure and sporting activities; increasing the enrolment and retention rates of
affected children in the education system; enhancing the empowering effects of education
by equipping students with the capacity to claim and exercise their rights; training teachers
to adopt constructivist strategies that stimulate self-worth and confidence among students;
eradicating illiteracy among affected persons; providing for continued and life-long
learning, as well as technical and vocational education, as part of both the right to education
and the right to work; ensuring the availability of counselling services, psychoeducational
methods and medical care within education establishments; guaranteeing reasonable
accommodation and support to students when needed; using the education system as an
opportunity for raising awareness of leprosy and the human rights of persons affected;
fostering the rights to freedom of speech and the participation of children affected in any
decision-making process involving their lives, in accordance with their evolving capacities
and in respect of their own choices of how to express themselves, including in non-written
and/or non-verbal forms; targeting schools as a primary locus for education on leprosy and
on the human rights of persons affected; using leprosy as a paradigmatic example in human
rights education; and, in line with the recommendation of the Committee on the Elimination
of Discrimination against Women to ensure equal rights within the system, medical schools
should ensure that their curricula properly include leprosy and in such a way that fully
respects the voice and choice of persons affected with regard to dignified health care and
their right to the highest standard of physical and mental health.
B.
Participation
62.
Participation is multidimensional, including the elements of representative
democracy, participatory democracy, non-governmental organizations and communities
and epistemic communities, as well as the family sphere. Participation can simultaneously
play a role in empowering persons affected and their family members and enable them to
become agents of change. Participation in decision-making is not only a right, it is also
pivotal for the production of more effective responses to problems. The Special Rapporteur
has previously called attention to persons affected as being lay experts and called for the
inclusion of situated knowledge in scientific research related to leprosy and in data
collection and policymaking (see A/HRC/38/42). Moreover, the involvement of persons
affected and their representative organizations and non-governmental organizations, as well
as research and training institutions, should be a fundamental part of the formulation,
implementation, monitoring and evaluation of all leprosy-related policies, which should
ensure transparency and the democratization of information and create the mechanisms for
holding policymakers, but also the private sector, accountable.
63.
International conventions and treaties, especially the Universal Declaration of
Human Rights, the International Covenant on Civil and Political Rights, the Convention on
the Elimination of All Forms of Discrimination against Women and the Convention on the
Rights of Persons with Disabilities, recognize the right of everyone to political participation
and representation in public office. The opportunity of everyone to take part on an equal
basis in public affairs and to have access to inclusive representation is key for the exercise
of democracy and of the right to self-determination. For underrepresented groups,
exercising the right to participation in public office and politics may require additional
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