A cry for justice from a young man living with albinism

2016-08-08 10:06
IEC voting station. (Duncan Alfreds, News24)

Mbombela – Young graduate and activist on the Albinism Truth, Tau Mebo, exercised his special vote last week in Pretoria where he lives and works in the psychology sector.

Originally a resident of and former student from Mbombela, Mpumalanga, Mebo said he was disappointed at how the government’s impressive speeches in high places about supporting people with albinism were not actually supported by real action.

He said there was no evidence that government actually cared and argued that government was doing little to stop inhumane acts against desperate unemployed people living with albinism.

"There are doctors in public hospitals that don't recognise albinism as a disability and merely see it as a skin condition. And as a result, people in rural areas with no work experience are exposed to skin cancer, HPS, permanent blindness and other conditions that could result from a failure to properly take care of one's health, which in the case of albinism means the hat, the shades, sunscreen higher than SPF30, long sleeve items of clothing and so on, which without the grant or subsidy, people living with albinism cannot afford," Mebo said.

"If the government cannot protect those who need protection most, then who's there to speak for the little guy?” Mebo asked.

The Mpunza case

He said the horror stories of people living with albinism are well documented. In most African countries these have been recognised and spoken about in parliaments, human rights forums and in international media.

There was an increase of people living with this disability; they disappear; they are murdered and mutilated by criminals, and all kinds of mythical reasons are advanced for this kind of behaviour.

One of the most publicised dialogues around these issues, discussed at the CRL Commission, related to the murder of Thandazile Mpunza, 20, in August 2015. Five suspects were arrested including her boyfriend, a pastor and a traditional healer. 

The Mpunza case is one of the many reflecting the challenges faced by people living with albinism.

Bolfred Mahlangu, a member of the South African Council for the Blind from Thulamahashe Municipality, was also at the voting station last week. There he campaigned for the rights of the disabled community.

He holds the position of public relations officer for the EFF in the area, and is known to pester the provincial government about its failure to recognise challenges facing people living with disabilities in South Africa.

Mahlangu questioned why the government had not made it its duty in each municipality to keep statistics of people living with the disability of albinism, as well as other disabilities such as blindness.

Opportunities for the disabled

“I am voting today at Thulamahashe and my hope is that the government will develop entrepreneurial skills and opportunities specifically to cater for the disabled in this country," Mahlangu said.

"They need to know where these people live, what their challenges are and help them to access facilities, resources offered by government and other institutions. The process of offering proper RDPs for the disabled is also an alarming neglected [and] inconsistent with what the government promises," he said.

According to the National Organisation for Albinism and Hypopigmentation, it was estimated that one in every 17 000 people worldwide has some type of albinism.
In South Africa, the incidence among black people is about 1 in 3 900 people with oculocutaneous albinism (eye and skin involvement) while among the white population it was less common with an incidence of 1 in 15 000 people.

According to available statistics, there are about 10 000 affected individuals in South Africa.

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