Albinism and albinos continue to be abhorred in various sects of the African continent. This stigmatization is the result of superstition and myths that continue to be passed on from generation to generation.

Mythologising a genetic disorder

I myself have not been spared these superstitious myths. Growing up, conversations around the subject of albinism often focused on curses, witchcraft and immorality. I never understood why people would say such things about another human being until, that is, I started delving into the cultural beliefs and social norms that help shape these hostile attitudes.

Since then, I have done my level best to educate and inform people about albinism; helping others to understand that a human being is not defined by their gender, sex, race, social status or academic background.

Facts about albinism

According to the Mayo Foundation for Medical Education and Research (MFMER), albinism can be hereditary or caused by a mutation of genes that contribute to an imbalance in the amount of melanin (skin pigment) one has. This absence (or near absence) of skin pigment is what causes the ultra-pale appearance of those with the condition. It is estimated that between 1 out of every 5,000 to 1 out of 15,000 people in Sub-Saharan Africa have albinism.

Hunting down albinos

Africans living with albinism continue to be sidelined, persecuted and killed for ritual purposes. The continent, quite literally, has its knee on the necks of those with albinism. This tragic state of affairs never gains much traction from the media, and as a result, those who are persecuted have learned to be silent and passive.

According to a July report issued by the Office of the High Commissioner for Human Rights (OHCHR), people with albinism continue to be killed for ritual purposes. Since the pandemic started, there has been an increase in the number of killings, the majority of which have been albino children. Those that hunt and kill albino people believe that their body parts can bring wealth and good luck during troubled times.

Speaking with a woman with albinism

To get a better insight into the situation and what it’s like to live in Africa with albinism, I spoke with Mary Regina Ndlovu-Kabosha, a human rights activist, actress, producer and motivational speaker from South Africa. What she recounted was deeply disturbing.

Regina: ‘Due to the fact that I have albinism, I was raped 15 times. I was locked up in a mental institution. I attempted 11 suicides. I was locked up in the toilet when I was in primary school due to the colour of my skin. I hated myself with a passion. I had to teach myself how to read and write through audio. I had to secretly become one of the worst villains in the entire school because I wanted to hurt other people. I became a liar and a thief. My job was to give back what life gave to me; which was pain, hatred, revenge, bitterness — anything repugnant that was going to hurt you and make you feel pain’.

As she poured out all of these daunting and hideous things that happened to her while she was still a child — just an innocent child that the world had rejected simply because she had less skin pigment — my heart became overwhelmed with sympathy and sadness.

Regina:Skin cancer is one of the biggest challenges we have. The biggest challenge of being a woman with albinism is that you are always outside; outside in the sun doing chores, looking for work, taking care of kids and so forth. [Even] two seconds in the sun can leave you all burnt. Moreover, there are very few schools that cater for people with albinism. Out of 100 schools, you might just find three. A lot of education is needed to raise albinism awareness.

‘Being born with albinism is not a curse … it just means I was born with pale skin. It’s just an issue of skin pigmentation. Some have the right amount, some less and some more, but it does not mean I am less of a human. All of these myths that associate albinism with debauchery and witchcraft are just utter hogwash — that’s why there is a need for people to be equipped with the right kind of information’.

Even in this so-called ‘woke’ generation, albinos continue to be stigmatized. Their stories remain untold. Their voices are largely silent.

Regina: ‘Anyone can give birth to a baby with albinism. A lot needs to be done. Look at the media in cartoons [and] books, the protagonists are black and white people … no sign of those with albinism — which just shows you how rampant the issue of stigma [concerning] those with albinism is. Our stories are not validated … [your] colour does not determine humanity. It’s just not right to treat someone like a lesser human being because of how they look. It’s not right. Let us all change that narrative’.

Before we part ways, I wonder how she has managed to overcome all the challenges. How did she put the past to bed and continue with her life while courageously raising awareness of the issue? She tells me boldly that she now lives her life to the fullest.

Regina: ‘When I came across the audio Bible my life changed. Then, when I started listening to that audio Bible, I started to rediscover myself and here I am; producer of ‘My Voice Albinism The New Era’, talk-show host, motivational speaker, evangelist, actress …, the list goes on’.

All I could say was, ‘look at you!’ with tears in my eyes. That’s how bizarre life is for those living with albinism; a total fiasco!

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