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.
Ms Ikponwosa Ero (Nigeria) was designated in June 2015 as the first UN Independent Expert on the enjoyment of human rights by persons with albinism by the Human Rights Council. Inspired by her experiences as a person with albinism, Ms Ero has, for more than a decade, been actively engaged in research, policy development and advocacy concerning the enjoyment of human rights by persons with albinism. As international advocacy and legal officer of Under the Same Sun, an NGO with a focus on albinism, she has participated in multiple activities and panels at the UN in Geneva and New York. She is also the author of numerous papers and articles on the issue, including with regards to the response to, and categorization of people with albinism in the international human rights system.
The Independent Experts are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council’s independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent from any government or organisation and serve in their individual capacity.
Check out our special website: People with albinism: not ghosts, but human beings.
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