United Nations (UN) independent expert, Ikponwosa Ero. Photo, supplied
MTHULISI SIBANDA
Africa Editor
JOHANNESBURG, (CAJ News) – WHILE the spotlight in recent weeks has been on the gender-based and xenophobic violence in South Africa, spare a thought for people with albinism.
Although apartheid ended 25 years ago and an inclusive constitution was introduced, people with the condition continue suffering grievous abuses on grounds including colour and disability.
Stigma and discrimination have led to attacks and their killings.
Children and women are bearing the brunt of the gruesome violence.
These include 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.
This is only a tip of the iceberg that United Nations (UN) independent expert, Ikponwosa Ero, was made aware of during her recently-concluded visit to South Africa.
She said a lack of dignified names for these vulnerable people in several national languages worsened discrimination against people with albinism.
In South Africa, they are largely referred to as inkawu (monkey) or isishawa (a curse).
“These names need to be dropped as quickly as the word ‘kaffir’ was for black South Africans,” Ero urged.
Using the so-called “K” word is illegal and culprits are liable to prosecution.
Ero raised 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.”
She disclosed some children attending school were now attending special schools because they were often safer than mainstream ones.
Worryingly, 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, the expert said.
“This fear is further compounded by security issues,” Ero lamented.
South African people with albinism face hurdles in accessing adequate education and healthcare while, 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 ailment is the biggest killer of people with albinism in the region.
Ero said highlighting the gifts, talents and potential of people with albinism to be useful contributors to South Africa and the world would end their abuse.
“This is one of the most effective ways to tackle stigma and discrimination.”
She believes continental powerhouse, South Africa, must show leadership to end the scourge of the trafficking of the body parts of people with albinism across borders.
South Africa has pledged to address the problems faced by the vulnerable members of the community.
Among measures is the inclusion of people with albinism as a protected group in the pending law on Hate Speech.
Government has also adopted the Ekurhuleni Declaration of 2013 and the Regional Action Plan on albinism.
The courts have also played their role, as was the recent sentencing to two life sentences by the Mpumalanga High Court on Themba Thubane, convicted of murdering a teen with albinism and the victim’s cousin.
“This case clearly demonstrates that people who live with albinism are vulnerable. This shows that there is a need to educate us to dispel the myth about albinism,” said Judge Sheila Mphahlele.
The number of people with albinism in South Africa, a country with an estimated 58,76 million people, could not be ascertained.
Academic health and genetics surveys estimate a prevalence of around 1 in 3 900 to 1 in 4 000.
“The forthcoming census in 2021 is a crucial opportunity to include a question on albinism that could assist in gathering data on the population,” Ero said.
– CAJ News