Have you ever walked into a library and been in complete awe of the wondrous books and range of information that it stored?
That is exactly what it felt like meeting Abongile Xhantini. Her multi-faceted personality and insightful mind were a pleasure to explore on this project.
Have you ever walked into a library and been in complete awe of the wondrous books and range of information that it stored?
That is exactly what it felt like meeting Abongile Xhantini. Her multi-faceted personality and insightful mind were a pleasure to explore on this project.
Albinism is a skin condition that not many people know about. Assumptions and bizarre myths have been made up over the years about people living with this condition.
In Tanzania, for example, people living with albinism live difficult lives.
Communities, particularly in rural areas in that country, believe that people with albinism bring good luck; thus they are killed and are brutally slaughtered for their body parts. These are used by those practising witchcraft as part of “imithi”: concoctions they give to people who believe these in turn will bring them healing or luck.
Such misconceptions have led to a great number of deaths of people with albinism.
Xhantini, who was born and bred in Johannesburg, explains that it was not easy growing up with the rest of her family in Sterkspruit, Eastern Cape, due to the harsh climate.
Unlike her siblings and the other children she used to play with at a young age, she could not expose herself to the sun due to the excruciating blisters that she would receive afterwards.
For her, dressing normally meant wearing long pants, long-sleeved T-shirts, closed shoes, a hat and sunglasses every day. She asserts that her late mother did an outstanding job raising her. She never once felt that she was abnormal, or ‘not like the other kids’.
Xhantini related the story of her birth as told to her by her family.
When her mother brought her home, her sisters thought she had bought them a doll, “a white fat baby”, they told her.
The minute the “doll” – confused and overwhelmed – let out a cry, though, – their mom shouted, “Quiet you two! – This is not a doll, it’s a baby!”
Xhantini knew from a young age what she needed to do in order to take care of herself. It was part of her daily routine to apply sunscreen before she went outdoors, to drink lots of water and maintain a healthy diet. That was her way of making sure she got the vitamins she needed.
Her parents did not like the idea of excessive medication, especially for a child as young as 8.
Asked how she would define albinism, Xhantini explained that she does not define it – because “it is not immanent”.
She does not label herself that way in her head – but she is aware that she has it and that it is the reason why she lives a certain way: it’s a way that she has always known how to live.
Albinism is a medical condition where one lacks pigmentation.
The definition of albinism by online resource the Mayo Clinic is that it includes a group of inherited disorders characterised by little or no production of the pigment melanin.
“The type and amount of melanin your body produces determines the color of your skin, hair and eyes.”
Xhantini has the most common form of albinism, which is a lack of pigmentation.
Eyesight problems can be a factor. Nystagmus is a state where the eyes move side to side in search of something to focus on, just as a lens does on a camera.
Xhantini is an avid reader and does not remember an instance where she has had reading difficulties. Exceptions have been made for her, for instance the light bulb in her room and pages that she reads have to be an offish white or yellow, less bright for the eye. Otherwise, she is capable of reading as well as any other person.
Xhantini believes that the messages you feed yourself determine the type of person you are and the type of person you can become.
She has always refused to see albinism as a disability or an inability to reach goals.
The people who played a big role in empowering her include her late parents, she says.
She makes no excuse out of her condition and was known as the child who loves knowledge, who loves to read, a child who wants to change the world.
Her life was not always easy and she has had her fair share of nasty comments thrown at her.
“Liswefe”, meaning monkey, was a word she remembers being said to her by a group of children who would laugh at her.
Xhantini says she would look in the mirror and not get the joke.
"Whatever names they gave me, have nothing to do with me. Those names don’t belong to me,” she says, shrugging with confidence.
At first misunderstood by some of her peers, she soon became a force people found themselves drawn to.
Xhantini jokes about her ability to blend in with black and white South Africans.
Her diverse background has exposed her to suburban and rural South Africa, which is why she could never define herself by the colour of her skin or her race.
Xhantini personifies sunshine – which is interesting because the sun is probably her least favourite thing. But she is a light that people are drawn to.
Her positive energy and engaging personality make her an extremely approachable person.
Her positiveness comes from her Buddhist practice.
Being a Buddhist has taught her that external success is worth nowhere near as much as internal happiness.
Buddhism is her home. When the world does not make sense and when she is not being kind to herself she turns to Buddhism as her refuge.
It brings “calmness to the chaos” in a world that consists of human beings who continue to be cruel to one another, define each other by labelling them and putting them in socially constructed boxes.
If one had to be asked who Abongile Xhantini was, one could simply say, she is not black nor white. She is colourful.
* Author's surname corrected to Vilakazi.
