Mandisa Makunga is the last born and only daughter to a mother of 3. She was born in a small village called Bomvana in Toise, Sutterheim. Makunga is the only person with albinism in her family. “Being the only child with albinism was never an issue at home as I was treated like all the other children, but the problem would be when I had to go play with the other children, they would stop playing and look at me differently,” said Makunga.

During her childhood days Makunga had to deal with criticism from her friends, some calling her names like Umlungu (white). “There was one incident where I came home crying because someone had called me inkawu (an animal). I was hurt and I could not understand why, but my grandmother sat me in front of the mirror and asked when I look at myself do I see a monkey and I said no,” said Makunga.

Makunga attended mainstream schools, and her bubbly personality assisted her in coping at school. Makunga had eyesight problems so she decided to study her textbooks before hand, so that she could not be lost when an exercise is done at school. When notes needed to be written on the board I would volunteer so that I have the book to copy the notes in my book.

“I never actually spoke about being partially sighted at home or school because I passed with good grades at school. I remember my high school teacher who had an understanding of my condition suggested that I should have an operation on my eyes because her mother had an operation and it worked. I cried because I remember that the doctor said there is nothing that they could do and she left it at that,” said Makunga.

“I loved Economics, Business Economics and Accounting so after high school I enrolled at Nelson Mandela University where I graduated with a National Diploma in Internal Auditing. University was a total different institution altogether, first semester I failed one subject and that subject was Economics, the subject I mastered at High school. I cried for hours because I knew that I did not fail because I did not study. I knew that was because I was struggling to see, so that is one thing that I struggled accepting being partially blind,” said Makunga.

As a firm believer of Christ Makunga would ask God, “did I really have to be blind as well, isn’t it enough that I’m different and I’m being called names every day of my life?” Makunga wanted to understand because she wanted a driver’s license. “One doctor told me I could not get a driver’s license.

That’s when I started learning about albinism and understanding that it’s a genetic condition. Because of a lack of melanin the eyes are affected and it causes partial blindness, and this means that I am a person with a disability,” said Makunga.

While learning about albinism, Makunga realised that most families and the community do not understand albinism, so that is why they are looked at and called names every day.

“We have to live in fear because we are told we are lucky charms, and we cure HIV. Every day of our lives we have to encounter discrimination from our own families and loved ones,” said Makunga.

Makunga’s mission is to educate people about albinism and to empower the younger ones that they must grow up to love and appreciate the way they were created to be. For families to love, care and protect their children because they are no different it’s just a lack of melanin.

“Because I understood and accepted my condition. When I had to go to job interviews, I had no problem explaining the condition of my eyesight and the kind of assistive devices I need to make my life easier. Albinism has taught me that people will treat you in the manner that you treat yourself,” said Makunga.

Makunga continued to say that “There is still a long way to go in educating the communities and even the government about albinism because we still have incidents like children being killed for ‘muthi’ and our graves being dug to get our bodies for muthi, but as people with albinism we are saying we are going to be the change that we want to see, making sure that we do the Awareness and educate people about albinism after all its just lack of melanin.”

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