Disabilities / Lifestyle

Able and proud

By Olwethu Boso

Albinos are some of the most marginalised group of people in South Africa, but more so in underdeveloped countries such as Tanzania, where people living with this condition are subject to ritual killings.

There are also a number of myths associated with albinos, the most common being that they do not die but rather simply disappear. It is such myths that force some albinos to keep to themselves. However, a number of them have managed to beat the stigma.

September saw the South Africa commemorating Albinism Awareness Month. The Healthy Bugs decided to sit down with a Rhodes University student living with the condition. Abongile Xhantini opens up about her condition and living as much a ‘normal’ life as she can.

You are guaranteed to hear Abongile from afar before you can even see her. Her loud, jovial laugh and spirit are what first capture most people before they notice the face or skin colour under the hoodie she wears.

“I don’t wear these hoodies because I’m hiding or not confident, you know, it’s simply because I need to protect my skin at all times even in overcast weather like this,” she says.

Abongile soon sets out to explain that she prefers to describe herself as a “black, white, African, Asian Buddhist tomboy,” rather than an albino. These are the fundamental descriptors that Abongile believes make up who she is.

“I am not an albino. Yes, I have albinism because it is a medical condition but I wouldn’t describe myself to someone as an albino. You are what you choose to be.

She further, explains why she chooses to use the terms black and white to describe herself. This is to acknowledge her parent’s black skin colour and deep rooted black background.  She uses white to describe her skin colour and the fact that she was brought up in a modern background that celebrated western culture.  “Society has a problem with someone like me using such words to describe myself, but that is what I am at the end of the day.”

Abongile doesn’t think she’s ever realised that she is different from the rest of her family, what she looked like when she was in the bathtub with her sisters didn’t make a difference to her. She adds that it was enough to know that her sisters were her sisters and her parents likewise because to her race doesn’t exist.

However, there have been times when she slightly felt different. These would be instances when she would be bathing with her sisters, they would be comfortable sitting in warmer water than what her body and skin could handle. This is when she realised that her lifestyle was and would have to be different from everyone else in her family.

Albinism is a genetic disorder and indicates a lack of pigment in a person’s skin, hair or eyes – and sometimes all three. This can lead to extremely sensitive skin, very white skin and/or hair, blindness or partial blindness, rapid eye movement and problems with depth perception.

Abongile laughs as she recalls an incident where she had to ‘mistakenly’ bump into one of her friend’s crushes just so she could see him properly. She credits such confidence to her mother, who never dwelled on her differences and never allowed her, or others, to feel sorry for her.

“I remember when I was about six, I came home one day after playing with friends and excitedly told my mom that a woman had said “shame” to me because I was burnt from the sun. My mom yelled at me and told me never to allow anyone to feel sorry for me.”

She believes that this same spirit, made it easier for her when she came to Rhodes University last year. t also allowed her to make friends easily, as she could tell apart those that were simply friends with her out of curiosity and those who genuinely wanted to be her friends and saw beyond her skin colour.

As we walk into the library, she is greeted by friends. The one friend even asks for notes from a lecture he had missed. It is clear, that her friends in no way treat her any different just because of her condition and visual-impairment.

Abongile commends Rhodes University for doing what it can for people living with albinism, but she adds that the institution can still improve its facilities such as getting more computers that have zooming software needed for those visually impaired like herself. There is currently one in the library.

Q & A

  • You mention the word ninja a lot throughout the interview when referring to your friends, why is that?

 Basically, a ninja is a Japanese warrior. So when I refer to loved ones and friends as ‘my ninjas’ there’s a spirit of loyalty, commitment and it’s just me saying  I’ll fight and stand up for them.

  • If you were to invite any 3 people who have had an influence on you, who would they be?

 His Holiness Dalai Lama because he’s my version of the Pope, since I am a practicing Bhuddist. He’s also funny which would make for easy conversation I hope. I’d also invite Koffi Anan, because he’s good looking and we share the same birthday *giggles*. Pema Chodron would be another guest, because she is the first Caucasian Bhuddist nun and she’s written the most amazing books. She writes in such a way that one can’t help but understand and there’s so much love and compassion in her books.

  • What was the one book/song that has changed your life or gave you that ‘aha’ moment?

Awakening the Bhudda Within by Lama Surya Das. Purely mind-boggling! I’m eternally grateful to Lama Surya Das because the book and its message basically saved my life. He spoke to the fear, the loneliness and the brokenness within me.

  •  If you were to wake up to be any celebrity, who would it be?

Me. I simply don’t want to be anyone else. If I became anyone else I would have lost the point of living. If I wish to be anyone else, I lose the essence of why I live in the first place. I would also have to take on their burdens, and their burdens were never meant to be mine.

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