The following is a conversation between Mpho Tjope (MT), Founder & Director of Albinism Advocacy for Access South Africa & Chairperson of the South Africa Albinism Taskforce and Emma Strobell (ES), Project Coordinator for the Mothering & Albinism project.
ES: Where do you call home?
MT: I was born and raised in Delportshoop, Northern Cape, South Africa. I was 1 of 7 children and the only one with albinism. In fact, I was the only person with albinism in my entire community! I was confused, I felt different. Teachers at school did not understand my condition—at that time there was no such thing as ‘reasonable accommodations’ made like large print. I didn’t have glasses, we read in groups huddled around a single book that had small font. I couldn’t play sports with my peers because the sun was too hot, I would get blisters and burn badly. Luckily, I liked learning and I kept up with school.
A key factor in my success is the support and acceptance I received from my family. This is why I am such an avid advocate for children to be loved and accepted regardless of disability by their families.
Maybe God was trying to prove a point: I’m black, but I’m white. We are all one, regardless of what colour you are.
Apartheid was just ending when I was school age – we were slowly moving towards the new South Africa. But, I grew up hearing stories of “bad white people.” When people called me the son of white people, I thought, ‘Am I bad?’ I saw race at a young age and understood concepts like colourism and segregation. As a boy with albinism I was confused, at one moment someone sees me as a blessing or lucky, but I cross the street and suddenly someone else sees me as a curse. I remember when I was 9 years old, a woman saw me and she screamed!
It was not until I was 16 years old that I saw another person with albinism! I was like, “Whoa! This person looks like me!”
ES: Your point about being raised as apartheid was just ending – how do you see albinism in the context of this part of the South African story?
MT: Maybe God was trying to prove a point: I’m black, but I’m white. We are all one, regardless of what colour you are. I always think of flowers – so many different colours, from different places in the world: combined they make a beautiful bouquet. I look at skin like that. We are all human.
ES: I’ve learned so much from you working together on fieldwork in the Northern Cape for our Mothering & Albinism project. I wonder if you could share how you and your organization first got involved with working with mothers impacted by albinism?
MT: When I started doing more public speaking after my book launch and through my organization, many women started to come to me with questions. Questions like what they should use on their child’s skin and what to do when the father of their child rejects the family. As a man, I cannot speak about how the father’s family mistreats a woman or about the father rejecting his home and family. I have not experienced that pain. I have not lived this experience. I suggested they form a WhatsApp group – this way women from all over South Africa could join and engage with each other, talk about whatever they needed to. It’s fun! One of the most popular topics is sharing with each other where the latest sunscreen specials are.
Tjope and participating students during an #ICanBe workshop in KwaZulu-Natal, 2019.
ES: What did you observe from your own mother’s experience?
MT: I remember her resilience, her stubbornness. Some people thought I should be going to a special school away from my home town, but she was like “No. He’s going to school here. He is part of this community.” She was adamant that the teachers could not hit me, corporal punishment in school was still alive and well in my generation, she thought my skin was too sensitive. Whenever a teacher would punish me that way, my mother would go to the school and ensure the teachers knew never to do it again. Even though we did not have much in terms of funds or education about albinism, she would stand up. She was very resilient to all of the outside forces. Of course, because I knew my mother wouldn’t let my teachers punish me that way, I would be so naughty sometimes just knowing I wouldn’t be punished!
ES: You’ve said how supportive both of your parents have been in your life. What do you think fathers of children with albinism need to hear?
MT: Things are starting to change, slowly. Fathers need to be responsible for their families. I think so much of the problem is our ego and pride. If they are teased and taunted by their community, family, or friends for having a child that is different their pride is injured. Some men are not resilient to this. I think the reason it is easier for men to leave their partners and families is because they do not start a relationship with their child until after birth whereas the mother’s relationship to their child begins the moment she realizes she is pregnant.
ES: What are ways to engage fathers in this situation?
MT: I’ve actually started a group with fathers who have children with albinism. I think if more fathers see other fathers showing pride in their children with albinism, this could significantly help. When we see fathers of children with albinism proudly being fathers to their children, this will begin to change the society’s view. We also need funding and research focusing on fathers!
ES: In light of International Albinism Awareness Day on June 13, what is your message? What is your hope for 2021?
MT: For PWA: know that you are important, your efforts are seen. Especially in the pandemic space. There is more social distancing, you aren’t meeting people like you normally do. Meeting via distance and virtually. You might feel alone. But you do matter and you are important.
My message to leaders and advocates: You are an answer to prayers. You are making a difference even though it might not be felt at this point. You are highly appreciated.
Particularly with the engagement of the UN, we are seeing how their policies and recognition of albinism has carried weight. Because UN is brokering change, even though individual governments may be reluctant, because the UN carries such weight, they will implement and engage in the process. There is accountability and motivation. Without it, I do not think we would see the progress that we can acknowledge today. We know that over the years many people have died and nothing was done, myths were ongoing and allowed for so long, but right now, there is a change and I am so happy to be part of that change.
For those who haven’t heard thank you – THANK YOU. Researchers, funders, those who donate, activists, advocates: we see you and we appreciate what you do. In recent years there has been change as more and more people are working for our cause: we feel it and we appreciate it! Thank you!
Written by Mpho Tjope, Founder & Director of Albinism Advocacy for Access and Emma Strobell, Project Coordinator Mothering & Albinism