Visibility and inclusion matters

Imbilini … My Friend! is a play that gives insights into the life of a person living with albinism and his friend, as they deal with poverty, alcoholism and prejudice. It’s a fitting play, given that 13 June is International Albinism Awareness Day. The play made its debut at Cape Town’s Baxter Theatre and runs until 25 June.

Albinism is a genetic condition but under society’s gaze, it morphs into a social stigma that results in attacks on and deaths of people with albinism in Africa. The persecution of these people is based on mythology and superstition. The majority of those killings are a result of beliefs that the body parts of people with albinism can bring wealth to those who obtain them.

Our perceptions of skin are rooted in colonialist ideologies that stratify people according to how light or dark their skin is, with fairer skins being valued over darker skins. For people with albinism, the usual understanding of colourism becomes uniquely nuanced. Malawian scholar Denis Mwanyanja Mwiba suggests that people with albinism were thought to be “born of European connection, which in those days was linked with a lot of wealth, fortune and prosperity”. They came to be associated with wealth but were denied the privileges that came with whiteness. 

But there are people with albinism who have claimed their identities and have ventured into professions in ways that inspire awe and admiration.

As the visibility of people with albinism increases, prominent figures such as Thando Hopa, Michelle Mosalakae, Refilwe Modiselle and Sanele Xaba have made it in their industries while advocating for the rights and visibility of people with albinism, women and black people. In 2019 Hopa, who is a model, activist and lawyer, became the first woman with albinism to feature on the cover of Vogue Portugal, where she expressed the importance of her activism in relation to her identity. 

 Model Thando Hopa Photos: Fahiem Stellenboom, Nicole Laxton Photography and Instagram

Modiselle turned heads when she became the first model with albinism to appear on a South African runway. “Firsts” launch us into celebration, followed by feelings of shock as we acknowledge the extent of exclusion and invisibility that marginalised groups experience.

As stars such as Hopa — seen strutting her stuff in the opening sequence of Netflix’s latest South African production, Savage Beauty — and Modiselle gain status, a newer image of the stars emerges.

Photos of Mpho Mofokeng on Instagram show a stylish twentysomething woman dining in popular Johannesburg restaurants. As a beauty influencer who models, offers advice on make-up and skincare and collaborates with big brands to promote inclusivity, Mofokeng contributes to the visibility of people with albinism and presents an alternative glimpse into what it looks like to be a Gen Z social media influencer who has aspirations in entertainment and happens to be living with albinism. 

model Sanele Xaba Photos: Fahiem Stellenboom, Nicole Laxton Photography and Instagram

“I think things are changing,” she says in reference to the beauty industry, “However these changes are slow. I can name numerous brands in the beauty industry that aren’t inclusive of people with albinism but I can name only a few that are. 

“What needs to change is how brands use people with albinism for short-lived campaigns aimed at inclusivity that last for about a month. People with albinism can be involved in different kinds of campaigns. We’re not defined by our condition, we’re more than that. I remember asking someone who worked at a modelling agency to help me get in touch with the agency, in the hope of working with them. However, they told me the agency ‘already had an albino girl’. In other words, one was enough.”

The word, “albino” is a crude term that makes the condition the focus of the person’s identity. It’s no wonder that people with albinism so often experience tokenism, where they exist as symbolic gestures or expressions of people’s pseudo-activism. 

Xaba, a model, in an interview with an international media outlet, had a similar experience to Hopa and Mofokeng. Hopa spoke about this reductionism in a different context on RLVNT!, a vodcast with Mail & Guardian arts editor and author Lerato Tshabalala. She relayed her experiences with media outlets being insistent on only discussing her challenges with albinism, despite her diverse and colourful professional career.

“It’s almost as if [people] are putting you in your place to say, ‘Listen! Your narrative is one of social exclusion and social rejection. How dare you imagine your humanity outside of that?’,” she says.

Terry-Ann Adams is the author of Those Who Live in Cages, a story about the lives of coloured women in Eldorado Park who rejected the boxes that minimise the lives of people with albinism. Adams has centred the stories on other aspects of her identity, particularly her coloured identity.

In White Chalk, a short story anthology also set in Eldorado Park, she explores her identity as a person with albinism. “White Chalk contains various themes including grief, loss, love, mental health and multiple other themes. Out of the 18 short stories included in the anthology, there are two short stories with main characters who have albinism. For the first time in my literary career, I’ve made the decision to write stories with main characters who have albinism.

“It’s amazing that more and more PWA [people with albinism] are standing up and starting to speak up for themselves,” says Adams. 

“If you are a PWA who has a platform you should try very hard not to speak for the entire community but to rather open up the gates and the doors for other PWA who would’ve never had the opportunity to speak for themselves. There are as many experiences as there are people and one person will never be able to articulate another person’s experience even if our experiences look the same.” 

Xaba, who has a successful career as a model locally and internationally, has had to deal with other aspects of his identity being ignored. 

“When I started out in the industry I couldn’t cast for black roles. The modelling and commercial industry did not consider me to be a black person. For me, this was highly problematic as it perpetuated exclusion and stereotypes for PWA in society. People need to realise that albinism is a skin condition and not a race of people. I feel the media has a powerful role in changing the narrative on how PWA are portrayed in the world.”

As we make attempts at transcending our bodies, black people, coloured people, women, queer people and people with albinism also undertake the task of taking care of the bodies we live in by donning pretty outfits, by expressing ourselves through photography, literature and digital curation as well as through activism. 

In this duality and striving for a sense of harmony, the media and the public play an important role in enabling people with albinism to express themselves in a variety of ways that aren’t limited to the colour of their skin or their marginalisation in society. 

The theme for International Albinism Awareness Day this year is “United in making our voice heard”. The theme intends to encourage unity in the community of people with albinism and seeks to amplify their voices and visibility in all areas of life. It’s up to society to recognise the difference that exists in that unity and to celebrate their voices and visibility in whatever form or shape they show up.

Xaba says: “This week is great for raising awareness and for showing how PWA are more than just their skin condition. For PWA who are made to feel ashamed of albinism or are having trouble loving themselves, I encourage you to fall in love with yourself. Everything you need is inside and everything you are is guided there. You are every ounce of divinity you will ever need.”

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