A/HRC/43/42/Add.1
Declaration on the Rights of Persons with Albinism, of 2013, was a key achievement. The
Ekurhuleni Declaration was the product of the first national conference on albinism,
through which the Government brought together over 250 delegates with albinism,
including 90 children from all nine provinces, to focus on the elimination of discrimination
against persons with albinism. The Ekurhuleni Declaration consists of 40 articles which call
for equality for persons with albinism, children’s rights in education, and the correction of
erroneous beliefs, myths and superstitions. It reiterates the standards of the Convention on
the Rights of Persons with Disabilities and of national laws protecting persons with
disabilities. It calls for self-representation, positive language, reducing the costs of living
for persons with albinism, improving access to health care, providing reasonable
accommodation such as adaptive devices, and strengthening the protection of persons with
albinism against killings and attacks. The conference participants included government
representatives, members of civil society organizations representing persons with albinism,
academics, artists and poets, among others. The Ekurhuleni Declaration prompted muchneeded dialogue and awareness in the country and laid the groundwork for subsequent
government and civil society engagement on the issue. This included a round table on
albinism in 2018, and support for programmatic initiatives on albinism at the provincial
level, although many of these have been ad hoc.
26.
The departments taking the lead on initiatives on albinism are the Department for
Women, Youth and Persons with Disabilities and the Department of Social Development.
They work with other crucial agencies including the Department of Justice and
Constitutional Development, the South African Police Service, the vulnerable groups unit at
the Department of International Relations and Cooperation, and others overseeing health,
education, sports, the arts and culture. The Independent Expert noted that the close
collaboration between the Department of Social Development, the Department for Women,
Youth and Persons with Disabilities and civil society organizations working for the human
rights of persons with albinism, particularly the Albinism Society of South Africa, had a
positive impact on the awareness at the national level of issues related to persons with
albinism. However, she notes that the interdepartmental work on issues related to
disabilities and albinism needs to be coordinated in a consistent manner, with clear focal
points who can ensure the integration and sustainability of engagement on issues related to
persons with albinism.
27.
The Government’s designation of September as Albinism Awareness Month is also
positive. Additionally, the national commemoration of International Albinism Awareness
Day, on June 13, and various undertakings to highlight albinism through sports, arts and
culture, are commendable, as these have been instrumental in educating and raising public
awareness about albinism.
28.
Additionally, numerous awareness-raising events have been held, including through
public funding initiatives of the Albinism Society of South Africa. Albinism awareness has
been supported through the arts and culture, such as the play Mama, I Want To Be the Black
That You Are, mentorship programmes, and soap operas with characters with albinism on
State-owned television, among other things. Representation at government round tables has
also been accorded to individuals with albinism, including models, actors and other public
figures.
29.
A bill on preventing and combating hate crimes and hate speech is currently before
Parliament, and specifically criminalizes hate speech against persons with albinism. The
incorporation of the Convention on the Rights of Persons with Disabilities into national
legislation is also promising.
30.
In terms of violence and attacks, prevention measures have been championed by the
South African Police Service, associations of traditional healers, religious leaders, and a
dynamic array of civil society organizations representing persons with albinism. The police
and the Albinism Society of South Africa have a memorandum of understanding to protect
the gravesites of persons with albinism from desecration and robbery of remains. In terms
of judicial remedies and access to justice in cases of attacks against persons with albinism,
6
Select target paragraph3
Connect to a paragraph
Connect to an entity
Disable highlights
Add to table of contents