A/HRC/44/46
educators and social workers. Training health-care workers to overcome personal and
institutional discriminatory attitudes should be implemented as a priority, alongside the
monitoring of health-care services and health-care delivery.
43.
Collection, analysis and dissemination of data, disaggregated by indicators of
equality, should be a priority for delivering evidence-based policies, which should be
designed, implemented and monitored in close collaboration with persons affected and their
family members. Good practices implemented in the HIV/AIDS field should be followed.
That field of action shows the importance of empowering individuals and communities to
address and respond to discrimination, having developed an outstanding good practice for
collecting data on stigmatization and assessing the levels of human rights enjoyment that
involved persons living with HIV as primary stakeholders and executors, called the people
living with HIV stigma index. Promotion of rights education for affected individuals, as
well as the delivery of legal advice, together with the enactment of protective laws and
policies and accountability in courts and tribunals, is strongly recommended.
44.
Awareness-raising as a structural pillar of any leprosy-related policy framework
should be grounded in evidence and give due consideration to local perspectives.
Awareness-raising strategies should also be designed and implemented in close
consultation with persons affected and communities in order to prevent any backlash
against affected individuals. Strategies cannot rely on medical knowledge and information
alone, nor be delivered under an individual-centred framework, but must employ
accessible, intercultural and gender-, age- and disability-sensitive language and formats.
Personal testimonies on the obstacles to living a full and dignified life, but also on how
people survive discrimination, are the most effective instruments for achieving systemic
change in mindsets. To that end, sharing positive experiences and the promotion of role
models and leadership skills should also be employed as effective strategies. Different
dissemination channels should be used, such as community-based and mainstream media,
the Internet and social media, as well as artistic expressions and performances.
B.
Reparation and memorialization
45.
Health and illness are not just biological phenomena. Accumulated knowledge in the
field of medical anthropology has proved the difference between illness, meaning the
bodily process itself, and disease, meaning the nosology produced by a given medical
system, which is always culturally grounded. Diseases are biosocial constructs and, as the
history of epidemics show, explanatory models of diseases can produce labelling and even
spur institutionalized and structural stigmatization, of which the modern history of leprosy
is a paradigmatic example. There was never scientific evidence to support the prophylactic
segregation of persons affected by leprosy, and yet such segregation was widespread from
the late nineteenth century until the late twentieth century – almost half a century after the
discovery of a cure. There are still up to 2,000 leprosy colonies and villages active in the
world today.
46.
Segregation was very often accompanied by public campaigns aimed at educating
the public on the dangers of interacting with persons affected by leprosy. The eradication of
the disease from the public space was pursued at the expense of the rights of those affected
by it. In many countries, marriage between persons affected was prohibited and, in some
countries, forced sterilization was a standard practice. Stigma was the dolus behind this
State policy, which continues to impact the lives of persons affected and their family
members, therefore comprising a continuous violation. Due recognizing of that systemic
and massive violation calls for reparation measures that not only redress harm at the
individual level and recognize victims as rights holders, but also promote social integration.
Such measures may be urgent for many persons affected, but also for their descendants,
given their age. Second and third generations living in leprosy settlements should also be
beneficiaries of complex reparation programmes.
47.
The legal basis of the right to reparation is anchored in the provisions of
international human rights instruments (Universal Declaration of Human Rights, article 8;
International Covenant on Civil and Political Rights, article 2; International Convention on
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