There's more to people with albinism than the condition, says activist

JOHANNESBURG - People with albinism still endure name-calling, prejudice and ostracism in South Africa.

The Northern Cape's Provincial Chairperson of the National Albinism Taskforce Mpho Tjope emphasised the importance of using a humanistic approach to define albinism, further sharing his personal experience and the challenges faced as a person with albinism.

“Unfortunately, culturally, we have names that define albinism, which are not good. Albinism also used to be defined as having defective genetics. We would be called people with no melanin. There used to be so many definitions,” said Tjope.

He spoke 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.

The Centre for Human Rights, Faculty of Law, University of Pretoria recently hosted the gathering.

"The objective of the project as a whole is to understand whether to what extent and how colour based discrimination affects the enjoyment of human rights by persons with albinism. So, it's a three-year project. In year one, what we did was conduct a research study,” said the manager of the Disability Rights Unit Centre for Human Rights at the University of Pretoria, Dr Dianah Msipa.

Albinism is a rare, non-contagious, genetically inherited difference present at birth. In almost all types of albinism, both parents must carry the gene for it to be passed on, even if they do not have albinism themselves.

Research has shown that women are often blamed after giving birth to a child with albinism and are accused of being unfaithful or of bringing a curse to the family. As a result, they are rejected by their husbands and abandoned by their communities.

“The intention of the workshop was to identify the impact on human rights violations, and also, I think, importantly, educating on albinism Civil Society Organisation on laws that inhibit human rights violation, letting people know that there's laws that can be used to fight this and to combat these issues,” said Dr Msipa.

According to the United Nations women and girls with albinism and mothers who give birth to children with albinism are exposed to extreme forms of violence, such as the hacking of their limbs while alive. This violence is the result of erroneous beliefs, for example, that sexual intercourse with a woman with albinism can cure HIV/AIDs.

The two main types of albinism are: Oculocutaneous Albinism (OCA) the most common type, affecting the skin, hair and eyes. Ocular Albinism (OA) is a rarer type that mainly affects the eyes.

Tjope stressed the need for respectful language when referring to individuals with albinism.

“It's very important that we don't say a person is an albino. You don't see a person, you just see the condition rather say a person with albinism.”