This article is part of The Visual Art of Creating Beyond the Apartheid Imagination program, funded by the National Arts Council in 2024 and implemented by Lukho Witbooi and Zimkitha Xwashu for Gallery Chosi. The program is a developmental initiative that reimagines art and identity by transcending the divisions and constraints of apartheid, embracing freedom, complexity, and new possibilities.
What does it mean to be seen—truly seen—in a world that often looks but doesn’t perceive? As artists, both Athenkosi Kwinana and I grapple with this question, translating our experiences of difference into our work. Kwinana — her living with Albinism, and I, navigating life with Chiari Malformation, a structural defect that occurs when part of the brain pushes through an opening in the skull and into the spinal canal resulting in chronic pain, dizziness, and other disabling symptoms— engage with personal narratives that bridge the gap between individual and collective experience. Through our art, we invite viewers to step into worlds often obscured by societal assumptions, fostering empathy by creating spaces where our conditions are not only seen but deeply understood.
Athenkosi Kwinana. Ndijonge I, 2021. Colour Pencil on Hahnemühle Paper, 130 x 80 cm (Framed size: 157 x 105 x 7 cm)
Framed in a Black Wooden Frame with Anti-reflective (AR) Glass, Courtesy of Berman Contemporary
Kwinana’s recent drawing series Displacement in Community: The Colour Series exemplifies the ways in which her experience with Albinism intersects with broader social issues like colourism, race, and gender. Created during a residency in Muizenberg, Cape Town, this series was born from an exploration of the theme of displacement. “What does displacement in community mean to you?” was the central question posed to the artists. For Kwinana, this theme opened a discourse on the complex realities of living with Albinism, particularly in the context of Blackness in South Africa. She notes, “As a PLWA [Person Living with Albinism], my skin does not primarily give off my Blackness, and as a result, my Blackness is questioned. Instead of critiquing this facet of my identity, I celebrate it.”
Kwinana’s work places the viewer in direct confrontation with the gaze. It is an invitation to look deeper. The viewer is called upon to recognize the humanity beneath the surface, to move past the initial curiosity or assumptions about her skin and engage with the fullness of her experience. As Kwinana states, her work tackles “the discourses of Albinism through constructive imagery,” challenging us to reconsider how we perceive and categorize people based on physical differences. In many ways, my own experience with Chiari Malformation mirrors this journey of confronting the gaze, though the visibility of my condition is not immediately apparent. My artwork often seeks to make this invisible struggle visible, pushing back against the notion that physical differences must always be outwardly visible to be understood or empathized with.
In my work, The Weight of Thought, a lino cut embossing of a brain on Fabriano paper symbolizes the constant pressure my condition exerts on my daily life. The delicate lines of the embossing, almost invisible at first glance, mirror the way my condition operates beneath the surface, unnoticed by most. This work is a metaphor for how invisible disabilities are often overlooked, yet they carry a heavy weight for those who live with them. As British artist Yinka Shonibare, who navigates life with physical disability, once said, “We are not used to seeing people with disabilities represented in a complex, layered way”. My work strives to contribute to this layered representation, just as Kwinana’s self-portraits complicate the simplistic narratives often attached to those with Albinism.
Our respective conditions offer different but interconnected perspectives on how society treats people who do not fit the mould of ‘normality.’ Kwinana’s experience of hypervisibility contrasts sharply with the invisibility of my condition, yet both experiences reveal how society marginalizes those who are perceived as different. The gaze of society on people with Albinism is often filled with misconceptions or intrusive curiosity, while the lack of visibility for those with conditions like Chiari Malformation often leads to misunderstanding or ignorance.
Art, however, transcends these personal narratives to create spaces of empathy and connection. By sharing our stories through visual language, we invite viewers into our world—not as passive observers, but as participants in a shared human experience. As Kwinana’s work confronts the gaze of society and demands recognition of her Blackness and personhood, my work calls for acknowledgement of the internal struggles that accompany invisible conditions. In both cases, art serves as a bridge, allowing viewers to step beyond the boundaries of their own experience and engage with the reality of others.
Chiari Malformation has shaped my artistic process in profound ways. The physical limitations of my condition—fatigue, chronic pain, and periods of temporary disability—have influenced the mediums and techniques I use. For instance, my choice to use embossing in The Weight of Thought was not only a conceptual decision but also a practical one. On days when my symptoms are particularly severe, I find that the slow, repetitive process of embossing allows me to create without exacerbating my pain. This technique, with its emphasis on subtle texture and form, also mirrors the way my condition subtly, but constantly, affects my life.
For Kwinana, her use of hands as a recurring symbol in her work speaks to the internal struggle between visibility and identity. Inspired by South Korean artist Park Seo-Bo, whose work also explores psychological duality, Kwinana uses sign language gestures to communicate her messages, symbolizing the need for communication in spaces where words often fail. In this way, both of our works use physical forms—embossed brains, gesturing hands—to give shape to internal experiences that might otherwise remain unseen.
Societal attitudes toward conditions like Albinism and Chiari Malformation are deeply rooted in cultural and historical contexts. In South Africa, people with Albinism have been subjected to harmful stereotypes and even violence, while those with invisible disabilities often face stigma or lack of understanding. Both Kwinana’s and my work push back against these harmful narratives, offering instead a more nuanced, empathetic understanding of difference. The intersection of personal narrative and empathy is central to both Kwinana’s and my artistic practice. Kwinana’s self-portraits challenge the viewer to confront their assumptions about Albinism, while my embossed brain artwork asks the viewer to consider the unseen struggles of those living with neurological conditions. In both cases, the act of seeing becomes an act of empathy, where the viewer is called upon to move beyond superficial judgments and engage with the deeper reality of our experiences.