I have been that young kid who looked at the TV and not see anyone who looks like me and trying to understand what I have that is so different from other kids.
– Siposetu (Sethu) Mbuli
“Hi! My name is Siposetu Mbuli.
I am from Eastern Cape, South Africa. I was born in a small village just outside King William’s town – which is a small community with one school, where everyone knows each other. My parents passed away when I was young, so I was raised by my grandmother. My family moved to Cape Town when I started high school. By then, the dynamics had changed completely from a small village to a township with a lot more people and different things happening. All of that required enormous adaptation on my end, especially as a person with Albinism. I had to try explaining my condition to the new community for them to understand me and my hypervisibility.
At present, I am doing my Final Year in Chemistry at the University of Cape Town. I am training to be a Scientist, I will be going for Honors next year in Chemistry, and after that, I want to venture into Story-telling.”
Tell us about the pivotal moment, aha moment or revelation that occurred when you decided to step out and be yourself?
The revelation for me was that there is nothing wrong with me, I absolutely deserve to be here, and I can’t go by what other people’s limitations of me are. Though I struggled a bit in my earlier years, I only started to realize in my late teens that I was shying away from things I was passionate about. For example, I did acting at school, but I shied away from it because I feared being judged.
At 16, I started doing radio and I thought to myself, “Am I really supposed to be here?”. The urge was to say; I matter and my story matters, and there is nothing wrong with me owning my space. That’s what made me come out of my shell.
A lot of people are not aware of Albinism, a lot of them confuse it with other skin conditions, with so many misconceptions around it – would you like to share with the world what Albinism is? What was it like growing up with it?
Albinism is a lack of melanin which is biological pigment found in skin, hair, eyes, and some internal membranes. The effect of Albinism is not just a lighter hair, or eyes, and skin being white (in my case), but also visual impairment due to the lack of pigmentation in your eyes.
Misconception around Albinism is really a big thing in Africa precisely because of ‘hypervisibility’. So, growing up in a community where you stand out and people trying to understand your condition in their own ways with no education around the condition – that breeds superstition and wrong practices. In my case, I have faced educational and financial barriers like the struggle that my family had to go through to make sure that I am able to access resources that would hold me equal to every other child in the classroom, or growing up with a grandmother who could not afford providing me with necessities like sunscreen (needed because people with Albinism are more prone to skin cancer, due to lack of pigmentation)
You are a co-founder of an organization called ‘Love, The Skin’. What does this organization do and where is it based?
Love, The Skin was started in 2016 by me along with a friend – Helen Webb – who also has Albinism. We met through social media after she saw a video I did for a media house in South Africa about my experience with Albinism. Soon, we broke into a conversation about how we can empower people with this condition and how we can bring change, it was during this time the idea of creating Love, The Skin came up. We started doing an online blog, talking to famous South Africans who have this condition, their own experiences, struggles in their profession and how they conquered that. Slowly, we started educating people about Albinism and all of this grew into partnering with a school in Cape Town where ~100 young people with Albinism study. We host support groups and workshops for them and their families to bring awareness in their communities. We have done a lot in past 2 years, but there’s more that needs to be done in South Africa.
You also got The Queen’s Young Leaders Award for your phenomenal work in ending the stigma that revolves around Albinism, how does it feel and how was your journey like? How did you get to know about the Queen’s Award?
It was an incredible experience. I got to know about the Queen’s Young Leaders Award last year through a former QYLA winner. She encouraged people to apply and in December, they announced that I was one of the winners. It was a three-stage process, they did an interview, asked for references and beneficiaries.
What drove me to apply for this award is the huge platform that it offers to talk about Albinism and make it center stage in a big way. After meeting the Queen, I needed to affirm that it actually did happen. A lot of people not only requested interviews, but also showed great interest in knowing more about this condition. This alleviated my work, gave it a louder voice to discuss issues faced by people with Albinism, particularly in Africa.
What plans do you have from here? How do you plan to take the world along with you in your journey?
The plan is to reach more people in Africa. My main goal is not to just raise awareness, but to also reach more people with Albinism. My driving force is; What would I say to my 9-year-old self who is struggling to understand Albinism and trying to heal from that? I would say, “Understand that your story is never in isolation, there is always someone else going through a similar struggle.” I want to connect those stories and use them as a collective power to step up. So, the plan is to visit other African countries with the work, hosting many more support groups and workshops. Also, continuing talking about it online.
A message for all the young girls reading you at the moment….
Your voice, your story, your presence; matters, and you absolutely deserve to be here. If you don’t feel that way, try to find people whose stories you resonate with. Try to reach out to them for support, put things in perspective and use your weaknesses to change your life and of those around you.