Dear Love, This Skin Family,
Thank you for reading, sharing and taking our conversations beyond this platform. We’re looking forward to hearing your feedback, but particularly what you’ve taken away from these conversations
We’re so honoured to bring you our February feature: Thando Hopa
Thando is a South African Activist, Lawyer and Artist. She is the first black South African to feature in the Pirelli Calendar (2018). She is currently on sabbatical from her legal career to focus on her other interests. She talks to us about having albinism, public perception and the intersectionality of her identity
Photo: Nick Boulton
Do you remember the particular moment you realized your “difference” from others around you?
I usually date it back to the first day of primary school when kids moved away from me and didn’t want to sit next to me. The name-calling started and it’s the most obvious issue, but what fuelled the realization was deeper than that. I think the realization is something that grew with time; it was a series of experiences that made me feel separate from the so-called “normal” kids. The funny thing is; i wasn’t conscious of my actions until they were pointed out as strange or abnormal. For instance: kids asked me why my eyes move around, why I bumped into things, why my head moved involuntarily, why I squint when I went out into the sun and so on. So many “whys” that my little self didn’t have the answers to. I didn’t just feel different, I felt faulty. So it’s not really something that got realized in a moment, it was something that accumulated through a series of experiences.
How do you manage the day-to-day demands of your life with being partially sighted, and what has helped most for you?
I sometimes use visual aids for reading. I tend to use a tablet instead of a phone because it’s easier to see everything on it. I also learned to communicate my needs in terms of skin and eyesight. If I’m expected to work, provide a service or assistance, I don’t allow myself to struggle unnecessarily, I communicate the assistance I require because my safety, well being and comfort are important to me.
There’s often a struggle between being vulnerable in talking about one’s experience with having albinism – and protecting yourself, have you ever struggled with this and how have you managed to balance between the two?
It’s a complicated issue. I haven’t figured out how to do it exactly right. The thing about identity politics is that they can have a tyrannical nature. I adore my albinism but I didn’t want to feel imprisoned by it. I wanted to discuss albinism without it being an all-consuming part of my multifaceted identity. I used to feel frustrated by the narrow focus of my albinism in media, but I was not going to let that make me denounce or resent it. It took some time to realize that my story touched many people; those who have albinism and those who don’t. Although my condition is rare, my story and life experience carry universal messages and useful insight. So instead of seeing my difference as something that made me feel small, I saw it as something that helped me expand and grow. I chose to use my difference as a tool to discuss issues around beauty, women, diversity, race, intersectionality, representation and other issues. And this is empowering.
Another thing is, I don’t share something I feel sensitive about; no one is entitled to my vulnerability. I only share experiences I’m at peace with, by choice not by expectation. This took time to get a hang of. Taking control of my story allows me to give out my vulnerability from a place of strength; this is also empowering.
Do you have anyone in your family/community/role models of people with the condition, how has this experience been?
I knew Mam Nomasonto (founder of the Albinism Society of South Africa) as a
child. My mother actually did a documentary on her and I played the role of little Nomasonto. Years passed before seeing her again, I had already started modeling by then. I grew to appreciate and value her work and her character. She set the groundwork to ensure that people with albinism have a greater level of social mobility.
To parents of children with the condition, what would you say?
Place yourself in a position to parent a child with special needs. Don’t go through a silent struggle; fear thrives on ignorance. Go to organizations, speak to doctors, be active in your child’s education and use other information tools to understand your child better. Learn, explore, affirm, support and love every bit of that child, all of this goes a long way.
You’ve spoken many times about the importance of representation and being able to see our stories told, what are you hoping people take away from your story?
It’s too early in my life for me to answer that question. I’m still crafting my story. But I do hope that my deeds become useful to humanity. I remember reading a Thomas Sankara quote some years back, he said “I want people to remember me as someone whose life has been helpful to humanity”. This affected me a lot and I share his sentiments.
Nathan Hoeffel, New York Model Management