South Africa must step up action to end “racial discrimination” against people with albinism, says UN expert
GENEVA / PRETORIA (27 September 2019) – The Government of South Africa must act urgently to end the dangers faced by
people with albinism who face discrimination based on colour, a prohibited ground of racial discrimination, says
visiting UN Independent Expert Ikponwosa Ero.
“Although apartheid ended 25 years ago and an inclusive constitution was introduced, people with albinism continue to
suffer grievous abuses on a number of grounds including colour and disability,” said Ero, the Independent Expert on the
rights of persons with albinism, presenting a preliminary statement at the end of her 10-day visit.
“Discrimination is worsened by a lack of dignified names for people with albinism in several national languages which
still use names such as monkey (inkawu), or a curse (isishawa), to officially refer to someone with the condition. These
names need to be dropped as quickly as the word ‘kaffir’ was for black South Africans,” she said.
Stigma and discrimination against people with albinism in South Africa have led to attacks and killings. Given their
minority status, an attack on some is a significant threat to all. Recent victims have been mostly women and children –
including Thandizile Mpunzi who was 20 when she was killed in 2015, and a 13-year old girl killed last year. Both were
mutilated and dismembered with their body parts intended for use in ritual practices.
“I welcome the Government’s efforts in working toward justice for victims and families but call for more proactive, not
just reactive, measures,” said the Expert. “For instance, awareness-raising with the participation of genuinely
remorseful inmates while they are serving their sentences could be a highly effective deterrent.
“Trafficking of the body parts of people with albinism across borders also highlights the need for regional action
against this scourge and I urge South Africa to show leadership.”
The expert also expressed concern that people with albinism suffered constant ridicule and social exclusion in their own
families and in society in general. “Women are particularly affected by stigma, with many being abandoned by partners
and spouses because of ridicule and discrimination or because they gave birth to a child with albinism.”
Bullying and insecurity are common for children attending school to the extent that some have resorted to going to
special schools because they are often safer than mainstream ones, she said.
“The situation has a damaging cumulative effect on the psychosocial health and self-esteem of many people with albinism,
and has resulted in depression, suicidal tendencies and an overall fear of going out in public. This fear is further
compounded by security issues.
“We have to change this and highlight the gifts, talents and potential of people with albinism to be amazing
contributors to South Africa and the world. This is one of the most effective ways to tackle stigma and discrimination.”
Ero said that although the South African Government had worked with civil society to build awareness and understanding
of albinism, she feared that pervasive superstitious beliefs and lack of understanding would continue to threaten the
lives of people with albinism – particularly in rural areas, with poverty, lower levels of education and high
unemployment.
In addition to risks of being killed and attacked, people with albinism face tremendous hurdles in accessing adequate
education and healthcare. As a result of their visual impairment, and a lack of reasonable accommodation for them in
school settings, many give up on education at an early age. They are often given low-ranking jobs or work outdoors where
they are constantly exposed to the sun, leading to skin cancer – the biggest killer of people with albinism in the
region.
The need for data and statistics relating to albinism in South Africa is essential, the expert said. Academic health and
genetics surveys estimate a prevalence of around 1 in 3,900 to 1 in 4,000 in the country with certain communities having
a prevalence rate of 1 in 832, but more research is needed to inform laws and policies affecting people with albinism.
“The forthcoming census in 2021 is a crucial opportunity to include a question on albinism that could assist in
gathering data on the population,” the expert said.
Ero welcomed the Government’s excellent cooperation during her visit and its willingness to address the plight of people
with albinism, including through awareness raising programme carried out in the country in partnership with albinism
communities.
“The inclusion of people with albinism as a protected group in the pending law on Hate Speech currently under review is
encouraging,” the expert said. She also heard from some people with albinism that they felt there was a changing of
mindsets towards them which helped with inclusion and acceptance. The work of civil society has also been exemplary,
including through mentorship programmes and the use of theatre and the creative arts to build awareness and correct
misbeliefs.
“Although there is much work to be done in South Africa in eliminating human rights abuses against people with albinism,
I am encouraged to see partnerships and cooperation being forged.
“I urge the Government and civil society to work together in the development of a national action plan that incorporates
the measures adopted in the Ekurhuleni Declaration of 2013 and the Regional Action Plan on albinism, which will ensure
that people with albinism – who are amongst those who have been left furthest behind – are not left out of the national
and international development agenda,” Ero said.
The Independent Expert will produce a full report and recommendations to be presented to the UN Human Rights Council in
March 2020.
ENDS