Activists calling for albinism to be recognised as a disability

Research has shown that the lack of melanin means persons with albinism are highly vulnerable to developing skin cancer.

By Palesa Manaleng – EWN

Individuals with albinism from various sectors have noted a persistent debate to ascertain whether albinism is a disability.

Activists came together at a two-day awareness workshop under the banner: Impact of Race and Colour on the Enjoyment of Human Rights and Fundamental Freedoms by Persons with Albinism in South Africa.

“Is albinism a disability, particularly when it comes to even in government, for example, if a person with albinism applies for a SASSA grant (South African Social Security Agency) they are told: ‘No you don’t have a disability you must go work’. Yet when you go to the Traffic Department to apply for a license, they say you are disabled,” said the Northern Cape’s chairperson of the National Albinism Taskforce Mpho Tjope.

Speakers discussed the need to recognise albinism as a disability and advocate for equal access to education, employment and healthcare. They highlighted visual impairment and skin cancer as vulnerabilities faced by individuals with albinism.

They further suggested that the University of Pretoria’s Centre for Human Rights should assist in holding the government accountable for the tangible progress in legislating albinism as a disability.

“My daughter was born with beautiful skin [she has albinism] but I was told I can’t get a SASSA card, or a disability grant cause my daughter’s skin is perfect. So, it’s very confusing to me as a parent who has a child with albinism. And if the government is still confused, what about those who are supposed to assist us? asked Lorraine Tshuma.

Research has shown that the lack of melanin means persons with albinism are highly vulnerable to developing skin cancer. In some countries, a majority of persons with albinism die from skin cancer between 30 and 40 years of age. This is preventable when persons with albinism have access to healthcare, sunglasses and sun-protective clothing.

“I think it’s quite important that we understand why albinism is a disability, and it is because of our eyesight, our skin is sensitive to the sun, and mostly also because of how we are treated. Disability used to be defined medically at first. But right now, there’s a human rights definition of disability, where the attitude of people can affect how you are perceived,” said Tjope.

“I mean, for example, if you say a person with albinism is a curse, how do you then hire that person?” 

According to Human Rights Council Advisory Committee there are two perceptions about people with albinism within society, especially within rural areas. On the one hand, there is the view that persons with albinism are regarded as a blessing and possess “magical” powers or good fortune.

On the other hand, there is the view that persons with albinism are outcasts in society and are “cursed” individuals.

“Even we as activists, can’t go and share information on albinism that doesn’t make sense. We can’t guide people to the right places because we don’t know if they’re going to get that assistance or be told otherwise. So even ourselves, we’re still very confused as to where we are with our government,” Tshuma pointed out.

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