The dark side of living with albinism

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Local poet living with albinism opens up about the issues he is confronted with daily

Growing up with albinism, especially in a rural community, is difficult due to discrimination, stigmatisation, and others mocking you.

Yet Boitumelo Tevin Gaddafi The Poet Manganya overcame all these challenges and the challenges associated with albinism to become a passionate and successful poet.

“The problem with albinism, especially in rural communities, is the lack of knowledge and information. Although I received immeasurable support from my family and friends, society still gave me the cold shoulder. It was mainly because society doesn’t know that a person with albinism is still a person the same as the rest and thus they do not know how to treat you. For example, my peers at school couldn’t understand that I was shortsighted and thus had to sit at the front of the classroom. Another problem I encountered was affording sunscreen to protect my sensitive skin from the sun.”

Boitumelo says he only truly came to understand albinism when he attended Siloe School for the Blind, a primary school for people living with albinism and those living without the gift of sight.

Here he had a complete mindset change and he started taking better care of himself.

“I moved to Pretoria where I enrolled in Filadelfia Secondary School. Here my perspective changed even more about how other see people with albinism, this also changed how I perceive myself. I acknowledged the boarding school environment I was exposed to was small and I had to prepare myself to face a bigger environment at university. Even though I had matured a lot over the years and learned to accept myself, I was still afraid of how I would be received by the other students,” he added.

“However, I swept away my fears and stood firm for what I believed in. I decided not to allow people to define who I was by my appearance. In fact, I would approach people who seemed not to understand what albinism was and explained it to them, informing them how to treat people living with albinism. I came to the realisation that how I treat myself determined how others would treat me. For instance, I pitied myself and only chose to socialise with others living with albinism, thus distancing myself even more from society. Because I pitied myself I in a way expected others to pity my, however, I changed this by changing my mindset.”

His advice to others living with albinism is that they need to realise the world doesn’t owe them anything and neither do they owe anyone an explanation for the way they look. With accepting yourself, others will come to accept you as well.

“We are powerful beyond measure. We possess the skills to be great people, we have much to offer to the world, we just need to unleash our potential and share our talents with the world,” he said.

His advice to those in society who shame people living with albinism or any other disability is to not feed their ignorance with discrimination but rather to educate themselves so they can learn how to accept them for who they are instead of their appearance.

source;http://reviewonline.co.za

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