A/HRC/44/46/Add.1
human rights capacity-building among schoolchildren. Importantly, the materials produced
by the Government make use of the testimonies of persons affected by Hansen’s disease,
not only giving voice to those who endured such gross violations, but also acknowledging
that personal testimonies of the obstacles to a full and dignified life, as well as of how
people survive discrimination, are the most effective instruments to systemically change
mindsets. Furthermore, Hansen’s disease museums have become important sites not only
for the preservation of history, but also for the elimination of harmful stereotypes and
stigma reduction strategies.
31.
The National Hansen’s Disease Museum in Tokyo 15 is a landmark example of
participatory museography and of the right to truth and memory being implemented from
the bottom up. Created in 1993 by persons affected by Hansen’s disease themselves, the
museum (which became the National Hansen’s Disease Museum in 2007) initially
consisted of a collection of items from all the sanatoriums in Japan, with the goal of raising
awareness about the personal histories of persons who were forcibly segregated. From the
outset, the museum was intended to tell the non-official history of these people who were
denied their civil and political rights, rendered invisible, silenced and robbed of the right to
continuity of life on the grounds of Hansen’s disease. Official history usually assumes the
viewpoint of elites, while rendering invisible the agency of people with less epistemic and
political capital. Official history is always backed up by concomitant processes of public
forgetting.16 Testimonies and oral history are an effective way to counter public forgetting
and the partial writing of history, by rescuing the stories of the victims from the private
experience of memory. 17 By creating the museum, persons affected by Hansen’s disease
ensured that their voices were the ones defining the production of the modern history of
Hansen’s disease in Japan, which has a powerful effect on human rights education and
enforcement.
32.
Currently, the National Hansen’s Disease Museum in Tokyo is run by a professional
team that focuses on three areas: curation, awareness-raising and conservation.
Significantly, the participatory matrix of the museum is maintained by a steering committee
that comprises persons affected by Hansen’s disease, members of the community and
experts. The restoration of dignity continues to be the core mission of the museum and to
that end, visitors are provided with first-hand testimonies, whether through video archives
or lectures and talks given by persons affected by Hansen’s disease to visitors and groups.
The museum staff also perform important work by preserving, studying and displaying the
artistic and creative output of persons affected by Hansen’s disease, including literature,
poetry and painting. A small part of the 13 sanatoriums in the country, including the
National Hansen’s Disease Museum in Tokyo, is dedicated to raising awareness among
schoolchildren, through visits to the museums and lectures at schools. Such good practices
should be replicated in the 13 sanatoriums.
33.
Memorialization processes are important for guaranteeing non-repetition of gross
violations of human rights, as acknowledged in the Durban Declaration of the World
Conference against Racism, Racial Discrimination, Xenophobia and Related Intolerance.
As pointed out by the Special Rapporteur in the field of cultural rights, memorialization for
educative purposes meets at least three goals: recognizing victims, personal and collective
healing, and prevention (A/HRC/25/49, para. 13). Memorialization also helps to promote
democracy and respect for human rights and is closely connected to freedom of expression
and the right to participation, reflecting key provisions of the International Covenant on
Civil and Political Rights. Furthermore, as acknowledged by the Committee on Economic,
Social and Cultural Rights in its general comment No. 21 (2009) on the right of everyone to
take part in cultural life, culture not only mirrors, but also shapes the core guiding values of
social life. That is why the right to participate in cultural life closely relates to economic,
social and political rights and should duly respect three main components: participation,
15
16
17
There is also the Jukambo National Museum, in Kuryu Rakusen-en, which preserves punishment cells.
Mahamadou Diallo, “People from different backgrounds write different histories: an essay on
historiography (Britain and India)”, African and Asian Studies, vol. 6, Nos. 1–2 (2007); and Georg
Gugelberger and Michael Kearney, “Voices for the voiceless: testimonial literature in Latin America”,
Latin American Perspectives, No. 18, vol. 3 (1991).
Margarida Calafate Ribeiro, África no Feminino: As Mulheres Portuguesas e a Guerra Colonial
(Porto, Edições Afrontamento, 2007).
9
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