Cultural Representations of Albinism in Africa

Figures

Figure 4.1. United Colors of Benetton advertisement (1992). Photo: Yves Gellie. Concept: Oliviero Toscani. Reproduced with permission from Yves Gellie, Benetton Group and Getty Images.

Figure 4.2. Dancers at the uMkhosi woMhlanga in Nongoma (2014). Photo: Marco Longari/AFP. Reproduced with permission from Getty Images.

Figure 4.3. Nomasonto Mazibuko holding the Benetton advertisement in Der Spiegel (1993). Photo: Robert Magwaza.

Figure 4.4. Polynation album cover, The Electric Petals / Teal Records (1995).

Figure 8.1. Project theory of change diagram.

Figure 8.2. Drawing depicting the opening ‘fight’ scene T. R. Mnyavanu.

Figure 8.3. Drawing depicting the Reproductive Dance by T. R. Mnyavanu.

Foreword
Unweaving Harmful Fictions: Cultural Representations of Albinism in Africa

Albinism in general has had many harmful fictions woven onto its body. The fictions arise in the form of biological and spiritual myths, as the collective imagination in any given society dictates – who is normal and who is abnormal, what is natural and what is supernatural, who is Black and who is White, who is human and who is other? Skin colour propels the body of albinism into an array of socio-political consequences, each of them setting artificial hierarchies on who fulfils the standard of what it is considered to be human. All of these consequences are usually a question of power and are moulded through the storytelling mediums of culture.

If we look more closely into the sub-Saharan African context, there are many social constructs that are not preserved through the written word, but are secured within the tenets of the culture. The dictates of whose humanity is subjected to cultural devaluation moves from one network of beliefs to the next, across nations, landing impactfully on the body it is targeted towards.

Albinism is a personal subject for me, as a Black African woman with albinism. I have worked in the business of representation through media, moving into the wilderness where many narratives compete to confine albinism to a marginalized social position. The narratives that we disseminate into culture become a form of negotiation, resistance and intervention in pursuit of social justice, inclusion and equity.

The body of analysis compiled in this book makes the reader appreciate how we can decentralize the portrayal of a particular human existence, in this case, Black African albinism, through cultural mediums such ←xi | xii→as theatre, literature, photography, film, music, interactive performance as well as figureheads who are custodians of culture. There is a deep and well-considered exploration and critique of the different knowledge systems and storytelling mediums that explore the ability to reinterpret the body of Black African albinism out of the metaphysical realm and back into its personhood.

Once we migrate out of film and into a reality that we can touch, one would do well to remember the timeless ability inherent in the theatrical world to assemble people, performance and information distribution as effective means to alter social misconceptions. Contributions to this collection from Tjitske de Groot et al., and Christiane Essombe, Jon Beale and Patricia Lund re-emphasize the notion of theatre as an accessible medium, subtly introducing the understanding that harmful narratives will continue to persist if constructive narratives are restricted and not broadcast through accessible mediums. This builds on Elvis Imafidon’s insight into how to use culturally relevant means to negotiate a more accurate comprehension of ←xii | xiii→the body of albinism. This analysis is deeply rooted in observing cultural compositions and knowledge systems, within African societies, that form knowledge bearing and knowledge sharing approaches that become fundamental when conscientizing a collective consciousness.

Acknowledgements

We wish to thank everyone involved in the development and publication of Cultural Representations of Albinism: Narratives of Change, including the contributors, the reviewers and all those who encouraged us along the way.

We are particularly grateful to Thando Hopa for generously agreeing to write the Foreword to the book. We would also like to thank Laurel Plapp, Senior Acquisitions Editor at Peter Lang, for her advice throughout the development of the volume and Carli Coetzee for her early input.

This collection of chapters has partly emerged from the ‘Alternative Explanations: Disability and Inclusion Africa’ project, which is funded by the Arts and Humanities Research Council and the Global Challenges Research Fund and led by Charlotte Baker and Elvis Imafidon in collaboration with Kobus Moolman (University of the Western Cape, South Africa), Nandera Ernest Mhando (University of Dar es Salam, Tanzania) and Emelda Ngufor Samba (Université de Yaoundé, Cameroon).

Special thanks are due to the Department of Languages and Cultures at Lancaster University for the financial support of this publication.

Introduction
Changing Narratives of Albinism in Africa

Oculocutaneous albinism is a recessive genetic condition which is characterized by a reduction or lack of pigmentation in the hair, skin and eyes of people with albinism. This results not only in visual impairment and the vulnerability of skin to sun damage and skin cancer, but can also lead to the stigmatization and social marginalization of people with albinism because of their visible difference, particularly in sub-Saharan African contexts.¹ There is some debate about whether or not people with albinism are disabled. The Kenyan politician and disability advocate Isaac Mwaura asserts that people with albinism are ‘black people with a white skin, who are disabled, but not disabled enough’.² Indeed, defining albinism as a disability has not always been a straightforward matter. In medical terms, while the skin of people with albinism is vulnerable to sun damage, which can lead to skin cancer, measures can be taken to reduce this risk, such as limiting exposure to the sun, applying sun cream and wearing a wide-brimmed hat and long-sleeved clothing. ←1 | 2→Equally, although people with albinism are visually impaired, their vision can be improved with vision devices and alterations to lighting and seating position.³ However, a lack of access to accurate information on albinism and limited access to sun creams and vision devices disables people with albinism, as do the beliefs attached to albinism. Using the social model of disability, which identifies disadvantage that stems from a lack of accommodation of a body in its social environment, it becomes clear that people with albinism are indeed disabled. Sam Clarke and Jon Beale go a step further, to suggest an expanded definition of disability that includes ‘socially originating barriers to civil participation’ as a way of incorporating albinism.⁴

The beliefs and stereotypes attached to albinism are one of the greatest impediments to a person with this condition taking full part in society. These beliefs range from misconceptions and stereotypes to traditional and contemporary myths, and sit alongside varying levels of understanding and acceptance of biomedical explanations for albinism.⁵ At the most extreme, these beliefs are manipulated for economic gain, resulting in the attacks on people with albinism for their body parts mentioned above. However, despite the focus in the media, advocacy and scholarship on the threat that this trade in body parts poses to people with albinism, a far bigger danger is exposure to solar ultra-violet radiation, which results in sun damage and a significant increase in the risk of skin cancer in people with albinism. As Sian Hartshorne and Prashiela Manga remark, oculocutaneous albinism causes a reduction in, or lack of production of the pigment melanin, which makes the skin more susceptible to sun damage and increases the risk of skin cancers.⁶