Happy new month Love, This Skin Family!
Our April feature is South African lawyer and activist Thubelihle Sibonakaliso Mpisi; this 25 year old currently works in the political domain but previously worked for the biggest intellectual property law firm in Africa: Adams and Adams Attorneys. He speaks to us about his mother’s influence, his views on albinism awareness and his experience of having albinism.
Photo: George Lewis
Tell us a bit about yourself; the place(s) you call home, and the people that have influenced you growing up
My name is Thubelihle Sibonakaliso Mpisi. ‘Thubelihle’ was given to me by my grandmother – who is still alive – and means good opportunity. The name ‘Sibonakaliso’ is probably the more interesting name in this narrative because it means prophesy; My mother’s sister Thandeka Mpisi had a dream some weeks before I was born, and in this dream she sees this white child sitting on the sofa, and of course at the time she tells the dream to everybody in the house and they don’t really understand what it means. Later I was born and lo and behold I am “white”, so they say that that dream was me and therefore called me Sibonakaliso. I was raised in Port Shepstone on the south coast of KwaZulu Natal, South Africa – that is where I was born on the 17th of February 1993; I matriculated there, I’ve basically spent most of my life there – after that I moved to Pretoria where I studied for my LLB. I’ve also studied in other parts of the world including doing some short courses in the USA in Washington DC as well as in Europe.
The first person that influenced me growing up is my mother, she has played a very integral role in ensuring that I have the kind of confidence I need to take on life, she basically is my friend – and we’ve always had the kind of interaction that can stimulate thinking from a very early age. I consider her to be a very wise person because she has not only instilled in me the confidence I need but has encouraged me to think critically about everything I interact with so I can be intellectually independent and not unconsciously have other people’s views imposed on me, especially where those views don’t further my own interests, and I really appreciate that about her. The second person that played a very integral role and influenced me, in fact two people I went to church with whom I consider very close, they are like my fathers; Pastor Benedict Mbatha and former Magistrate Timothy Siyabonga Ngesi. I got along very well with both of them, they played an integral role within the context of spirituality as they enabled me to tap into the element of feeling the kind of worth I needed as a person. They also gave me an outlook on life in general because they were way older than me, they were probably old enough to be my grandparents, but we had the father/son – and in fact brother – relationship which we still share. I’d say Mr Mbatha espoused more to my spiritual side and Magistrate Ngesi espoused more to my intellectual and academic side because of the background he had in law.
As someone who has spoken widely about being a South African with albinism, and the importance of not allowing stereotypes to define you; do you feel we’ve made progress on how PWA are viewed in South African communities, and in particular by the media?
Let me divide this question into two parts, the first is what our understanding of progress is, and the second part is the role of media. With the role of media; I think we must gage the role of media to the degree that it maintains stereotypes about people with albinism; at times without understanding that it is doing that. For instance, in Africa people are poor, that’s a reality but when you project that poverty in a way that seems to suggest there’s no other narrative – that is where I feel the arbitrariness of media becomes relevant. The point I want to make is; media must project what society wants it to project, and what society considers an ideal. So from my perspective, at the centre of this discussion is: it becomes a problem when biological features – of which people didn’t opt for by the way, because that’s how they were just created – become the basis upon which people can be accepted or rejected from a social setup such as media.
The second thing I want to point out relates to stereotypes, and whether we’ve made progress in combating those stereotypes: well again, this becomes problematic for me because we need to gage how we measure this progress, do we say there’s progress because there’s less killings of people with albinism? Do we say there’s progress because there’s more acceptance of PWA in either “white” or “black” communities? How do we measure this progress? I think we must not measure progress so much by the level of awareness people have – yes I agree there’s a need for that – but we must measure it by the degree to which we can instil the kind of confidence that is needed by people with albinism to take their rightful place in society. If we gage our programmes like that, what we’ll be achieving at least is that we’ll be instilling the kind of attitudes in people that will be independent of the reaction of society. Our programmes should not so much be anchored on making society understand us (as people with albinism), but rather enabling us to understand ourselves and our potential. I’m not suggesting awareness is not needed, because you can have all the confidence you need but if you’re going to operate in a society that does not understand you and plays a huge role in exterminating you, what use is there to be confident? But more than awareness we need to build confidence to withstand these stereotypes perpetuating insofar as we are concerned.
How do you practically manage the day-to-day demands of being a lawyer and being visually impaired, what are some tricks that have worked best for you?
I think our levels of (visual) impairment differ from one person to the other. For instance, I can see something very far but I have trouble seeing small font, this is not something akin to just me, but even people without albinism. I also have a Driver’s licence, I can see when I’m driving. I think this has something to do with the fact that when I was younger, my mother paid particular attention to eyecare, I’d be lying if I said my visual impairment has ever been a dramatic problem for me.
How do I manage the day-to-day demand of being a lawyer? So I used to work for one of the biggest intellectual property law firms in Africa: Adams and Adams Attorneys. One of the weirdest things that would happen is interaction with clients where you’ll be talking to someone over the phone for a while; they know you speak IsiZulu and your name is Thubelihle, and the day you have to meet them it feels weird, and they kind of say “I thought you’d be non-white/thought you’d be black”. But in all honesty, the challenges I face as a lawyer are to some degree the same challenges other people face. But to a greater degree it’s issues relating to interaction and understanding that I find myself dealing with mostly, and how I manage these is I always stand my ground, people will try to intimidate you and try to make you feel uncomfortable, I’m one of those people who doesn’t care, so having such stereotypes and assumptions about me does not have any harm on me. For me, it is less about how I manage the ‘day-to-day demands’ but rather how each day becomes a stepping stone through my albinism.
Have you ever felt the role of educator – wrt albinism – too imposed on you in any situation, and how do you respond to such an imposition? Or do you feel as PWA, we should play the role of educating others as much as we can?
In all honesty, I’ve never felt there’s been an imposition, but I do think there’s a need to educate people, but the question of who we educate then becomes central: are we educating people with or without albinism? As I’ve said, from my perspective it would be people with albinism as they are the people who society has stripped of their dignity and therefore must be the people to be equipped to deal with the challenges. There’s no use in saying people must accept you when you have not come to complete acceptance of yourself – in fact – people can only accept you to the degree you’ve accepted yourself; you can only demand as much love as you have for yourself. This is why I say any educational programme must start within the constituency of people with albinism.
What are you hoping young people with albinism take away from your story?
I hope they take away the fact that they have the requisite ability to be and do anything they want, without fearing that their appearance will be used as a hindrance or basis upon which they’ll be excluded. But what I hope they understand more is that sometimes we empower people to take away from us what is rightfully ours, we enable the views and perceptions others have of us to take space in our minds. And at times our reactions then are informed not by our own understanding of ourselves but by the perceptions that have been imposed on us. Whatever decisions we make should flow from our own sense of empowerment, from our own sense of victory and from our own point of psychology.
Photo: Thato Dube