Living with albinism in South Africa

People with albinism often face discrimination and ridicule within their own families and communities.

World Albinism Day
Nombuso Cele, a 24-year-old student from Durban, South Africa, tells how growing up with albinism can be very challenging [Al Jazeera]

Durban, South Africa – Albinism, a congenital disorder in which people lack colour pigmentation in their skin, hair and eyes, affects about one in every 20,000 people [PDF] worldwide. It is most common in sub-Saharan Africa, where there remains great misunderstanding about people with the condition.

In some parts of southern and eastern Africa, body parts of those living with albinism are believed to hold magic powers, and so they are hunted and killed by “albino hunters”.

In 2016, there have been attacks in Tanzania, Burundi and Malawi. But even when they are not hunted, people with albinism often face discrimination and ridicule within their own families and communities.

Here Nombuso Cele, a 24-year-old financial management student from Durban, South Africa, describes the challenges that people with albinism endure in their day-to-day lives:

READ MORE: Malawi failing to protect albino community

‘Myths about albinos need to end’

As much as some family members accepted me from birth, it took my parents some time to truly accept me. It affected me because I needed them at that time, and I didn’t have their support.

But I couldn’t blame them because they didn’t understand what was going on with me. I have experienced a lot of discrimination from our society and people who are uninformed about albinism.

When I was in primary school, other kids stayed away from me because I was different from them and it affected my self-esteem. I was called different names; some would call me “white spooky”, and others would always tease me and call me ugly.

I myself didn’t understand what and who I was until, one day, a girl from my class reached out to me.

She asked me why I was casting myself aside from other kids, and I had to explain to her that it was because I was different.

She was so young, and I was amazed with her mindset. She told me that people will always talk no matter what, but it’s up to me to change their perception of me.

In high school, I started gaining more confidence and claimed my position and my right to be part of the so-called “normal” society.

Since then, I have always had confidence and have not let anyone treat me as though I were different from the rest of the people.

People have a crazy idea that albinos are not human enough to be part of society.

READ MORE: Albinism in Malawi

People need to accept us for who we are, and if that means I have to associate myself with them and exist in the same space as them, then so be it.

I have had challenges at school with my eyes, but that did not stop me from following my dreams. I have friends who have been helpful throughout the past two years of my studies, and I am very grateful for having such people.

I have had my fair share of challenges and faced a lot of discrimination, but I chose not to let that determine who I am.

It’s funny how dark-skinned people think they are better than albinos, but we are all black. I have come across people who would make derogatory remarks when they see me, especially old men who would refer to me as isishawa (cursed).

Sometimes I laugh and brush it off because I understand where they come from: They were born during an era where there was no information about albinism.

But when young people make derogatory remarks, it really frustrates me because it shows how ignorant we as the youth can be.

Within the university – Durban University of Technology – there are people who still look at me with resentment. That alone shows how uninformed and socially illiterate young people can be. I am OK with the fact that our university doesn’t have any organisation specifically for people with albinism because we are well informed about it.

It is the society that needs to be informed, and the organisations advocating for people living with albinism should take a different approach when raising awareness.

Instead of mobilising each other, they should involve the society and provide necessary information to them.

I am very grateful that my mother did not take me to the special schools that accommodate those living with disabilities. As much as the government declares albinism to be a disability, I don’t allow myself to be treated as a disabled person because I am able in every way.

Myths about albinos need to end.

Men need to understand that albinos are human too, and [not believe] the myth that having sex with a person with albinism will cure HIV and Aids. 

People need to stop being gullible and ridiculous. We have the same blood; it is just the skin pigmentation that is different.

Many people are brainwashed and believe that those with albinism have a certain magic. Yes, we are special, and there is something special about us. That doesn’t make us animals to be preyed upon and brutally killed.

We should not be made to feel self-conscious about who we are because that’s how isolation begins. I am impressed by the fact that our government has begun considering us for employment opportunities because we are just as capable as others, regardless of our condition.

As told to Khadija Patel and Lizeka Maduna. 

Source: Al Jazeera