Dear Love, This Skin Friends,
We’d like to introduce these special entries to our community, where we have candid conversations with people with albinism; on life, their upbringing, their aspirations, but mostly on what has inspired their strength, bravery, and how they’ve asserted their individuality despite what the world has been saying to them. We hope you take away pockets of wisdom from the conversations,
This week, we had the honour of chatting to TV host, Motivational speaker, MC and Africa’s first successful model with albinism; Refilwe Modiselle –
1. Do you remember the particular moment you realized your “difference” from others around you? Talk to us about this.
I realised my difference from a very young age as a child who was born in the township. I was born in Soweto Rockville where we all know it’s a predominantly black community & I seemed to be the thorn among the roses with being a white looking individual. So I’ve always known I was different but never questioned it because of the household I was brought up in. My mom never made me feel like I was different. I had to notice it from outside instead.
2. There’s often a struggle between being vulnerable in talking about one’s experience with living with albinism – and protecting yourself and your independence, have you ever struggled with this and how have you navigated it?
I’ve never felt vulnerable nor felt like it was a struggle for me to talk about my albinism because from a very young age it wasn’t a factor for me. I grew up with assurance that came from home & that I was loved, so I never felt like I was inferior to myself instead it was the questions that came from the exterior. And as a child I don’t think you are fully aware of what’s going on with you until you are subjected to have to explain yourself to society & that was only when I was a lot older & had to realize I was dealing with ignorance and a lack of education about albinism generally.
3. Growing up, did you/family have any comprehensive understanding of albinism, and have things changed?
My mom knew exactly what it was & so did my family, otherwise she wouldn’t have gone to the degree she did as a parent to ensure I received the best & necessary care. I come from a learned family, so they are all clear of what albinism is and that hasn’t changed.
4. How do you navigate the day-to-day demands of your life with being partially sighted, and what has helped most for you?
Funny enough I think you learn to live with your “limitations” even though it is tough when you have to keep explaining yourself but I think the strength & confidence in me allowed me to speak up instead of keeping quiet. So I often joke about my short sightedness but end up making people understand. It’s tough for me to get a licence at this point. And when I did work a 9 to 5 in an office I found that I’d take strain & often wouldn’t feel comfortable explaining my difficulty. But I often found myself shielding myself because I didn’t want pity or to be made to feel less so I’d push to do things just as normally with a confidence. I probably pushed twice as hard as anybody.
If there’s one thing about me is that I’m not ashamed to tell you I can’t see…. if anything I’ve turned it into a joke for myself because I need you to understand I’m not phased by my limitation. I do the best I can with it & have never used it as an excuse to not do what I want. So I’m quite frank.
For instance if I’m cast for a show to host I’m upfront I don’t see autocue, so they will accommodate that I need to have a confirmed script prior to being on set. In cases where I will struggle with something I will mention my difficulty but still try do what is needed until it defeats me. I’m not shy to speak up & don’t feel I need to validate it to anyone.
5. Did you have anyone in your family/community/role models of people with the condition, – what was this like. If not, do you think you’d have had a different outlook of your place in the world?
I didn’t have role models who had this condition for a very long time until I looked to people like Salif Keita. And growing up I had to be my own reference because I was never socialised with people that had albinism. I was encouraged & given the freedom to become my own person/individual. I was never encouraged to group myself or feel like I should be with people alike.
6. You say you were never socialised with people that had albinism. And “I was never encouraged to group myself or feel like I should be with people alike” How has this affected your interaction with other people with albinism now?
This question is relative to every person & may not be an albinism factor. For me I wasn’t affected at all, it’s not like I didn’t know how to relate to my own people. I was just never raised to feel that I needed to belong anywhere. It’s like asking how do black people relate to each other whether you are in Europe or Australia, it’s still normal for you because you were raised to respect people generally.
So my approach on people has never been one that segregates. For me people are people period & my interaction has been to treat people as they are, not because they have albinism or black or white or green. Through my own view of the world as a whole I developed my own thinking not the expectation that I’d feel different among my own people.
These conversations start from home. I believe your thinking or principles & thoughts are shaped by what’s instilled or nurtured in you from home. That’s your first point of reference for anything in life before you exposed to outside. This will often be a determining factor on your own outlook or approach of certain things.
7. Being hyper visible – First as someone with albinism, and also as someone in the media industry, sometimes both:
- How do you reconcile with representing so many within that public space, and also staying true to who Refilwe is (outside having albinism), and not have to, so to speak “Feel married to your condition”?
I’ve always maintained to teach about albinism through the things I do whether it be in or out of the media space and for me I’ve chosen challenging spaces to break those barriers. So my albinism is a voice as is that not only relates to those living with the condition but has inspired others beyond, anybody that has to face societal discrimination.
8. What would you like to say, especially to young South Africans, living with albinism?
You are not an “albino” you live with a condition that is albinism & it must never define the person you are meant to be in this world. Live your life to the fullest making sure that regardless what the world says or thinks, you can win in your skin. Be you, your own person, don’t allow society to put you in a box or make you feel inferior to who you are.