Reviews of Academic Articles

Elvis Imafidon, African Philosophy and the Otherness of Albinism: Black Skin, White Race (Routledge, 2018)

African Philosophy and the Otherness of Albinism: Black Skin, White Race opens up, for the first time, a philosophical approach to understanding albinism in African contexts. The task would seem a formidable one, but Elvis Imafidon’s ground-breaking work accomplishes it admirably, providing insightful and illuminating analysis of social and moral attitudes towards albinism, and understandings of albinism in African traditions.

As Imafidon points out, albinism is one of the foremost disability and public health issues in Africa today. It often makes headlines in the local, national and international media and forms the basis for intense advocacy at all levels, due primarily to the harmful representations of persons with albinism which have promoted discrimination, stigmatization, harming, killing, commodification and violation of their human rights.

Among the questions addressed by Imafidon are, how is albinism understood in African thought? Why do harmful beliefs about albinism still persist in modern African societies? What is the duty to, and burden of, care for persons with albinism? What peculiar existential challenges do persons with albinism in general and females with albinism in particular face in African societies and how can they be overcome?

African Philosophy and the Otherness of Albinism: White Skin, Black Race digs deep into these philosophical questions recognising that understanding the ways in which albinism is conceived of in African places is a necessary step to take in improving the wellbeing and integrity of persons with albinism in Africa today.

 Charlotte Baker, Lancaster University

 

‘Witchcraft-related Abuse and Murder of Children with Albinism in Sub-Saharan Africa: A Conceptual Review’ (Taylor, J., Bradbury-Jones, C., Lund, P., 2019).

Taylor et al. compile the somewhat limited information and research available about the psychological effects that people, particularly children, living with albinism in sub-Saharan Africa face. The purpose of the report is to create a platform upon which to build more information and to provide a model for further research. They bring together the information available about the difficulties caused by the physical and psychological health risks that people with albinism face, and the dangers and myths associated with witchcraft and stigma.

The article provides an insight into the dangers of everyday life for those living with albinism in Africa. It lists the misconceptions about albinism, using anecdotes from people who live with albinism who have endured serious danger and hardship, and who live with fear each day. It also outlines how the families of people with albinism also endure hardships, such as being the victim of myths and worrying for their child’s safety. The article suggests that there are five interconnected reasons why children with albinism are vulnerable: their eyesight, their young age, their sensitivity to sunlight and the danger of prolonged exposure to the sun, the social stigma and lack of understanding, and the fact that in some regions their body parts are sought after for witchcraft rituals. It uses this theory and a human rights-based approach to suggest how to improve the safety of people with albinism.

The article also reports on the vigilance that people with albinism and their families find themselves having to have. All this information combined with ways in which communities can be educated about albinism (particularly through teachers) makes this a valuable and insightful resource for those who want to help to implement change.

Rebecca Dacey, Lancaster University

 

‘The Role of Media in Advancing the Rights of Persons with Albinism in Malawi’- Bonface Tafikah Massah, Chimwemwe Manyozo, Alan Msosa, and Timothy Mtambo (2017)

The aim of the article is to analyse the role of the media in raising awareness of violence against people with albinism in Malawi. Massah et al focus on the role online publishers such as the Nyasa Times, Daily Times, and Malawi Nation played between 2015 and 2016. They explore how influential these publications have been in shaping public discussions and address the presentation of albinism in the media as a human rights issue and criticise the terminology that is sometimes used.

The article provides an insightful look into what life is like for people with albinism and the dangers they face. It outlines how media coverage has been monumental in spreading awareness of the realities of life with albinism in Malawi and the many assaults and killings. However, it also shows how the media has been detrimental to the safety of people with albinism in Malawi through mistakes and reporting style, highlighting the lack of sensitivity that the media reports have often shown.

The article is extremely detailed and useful for anyone researching the impact of the media on people with albinism, and for individuals and organisations working to improve the lives and safety of those living with albinism in Malawi. Massah et al recommend that further qualitative and quantitative research be taken into the role of the media and the creation of a national response.

Rebecca Dacey, Lancaster University

 

Jennifer Kromberg and Prashiela Manga (eds), Albinism in Africa: Historical, Geographic, Medical, Genetic and Psychosocial Aspects (Elsevier, 2018)

This edited volume draws together new and existing research on albinism from many fields into an exciting and valuable resource. The volume is grounded in the expertise of the editors and its international contributors. It was inspired in part by the editors’ interest in documenting the extensive research they and their colleagues had undertaken over a period of 45 years, and informed by Jennifer Kromberg’s participation in the First International Workshop on Albinism in Africa, held in Cameroon in 2015, and in a workshop focused on advancing the rights of persons with albinism at the Centre for Human Rights, University of Pretoria.

This volume of research provides a review of current knowledge of albinism and its historical background, with a particular focus on social issues. While it is not possible here to mention all the topics covered, among those addressed are the history of albinism, the development of scientific understandings of albinism, its clinical features, epidemiology and prevalence, and there are contributions from the fields of molecular biology, dermatology, ophthalmology and genetics. The particular emphasis on social issues points to the expertise of Jennifer Kromberg, with contributions on the psychosocial and cultural aspects of albinism, social marginalization and advocacy. It is fitting that the final chapter focuses on the experiences of Nomasonto Grace Mazibuko, a great advocate for people with albinism and the founder of what is now known as the Albinism Society of South Africa (ASSA). The editors conclude by identifying new directions for research in the medical, biological, molecular and psychosocial fields.

Although some of the material included in the volume is very specialised and adopts quite specific disciplinary language (for example, the sections on clinical characteristics, molecular biology, or genetic testing), the editors have been careful to ensure that much of the material remains accessible to the general reader and have included a useful glossary. As such, this resource will be invaluable to professionals in the medical and general healthcare fields, as well as those providing community services, human rights lawyers, members of albinism societies and their advocates. It will also provide a very useful source of information for students and educators.

Charlotte Baker (Lancaster University)

 

D.F. Bryceson, J.B. Jønsson & R. Sherrington, ‘Miners’ magic: artisanal mining, the albino fetish and murder in Tanzania’. The Journal of Modern African Studies, 48.3 (2010) 353-382.

A series of attacks on people with albinism in Tanzania led the authors to write this article. At the time of writing close to fifty people with albinism had been murdered in two years (from 2007). They focused on the Lake region/Sukumaland in north-west Tanzania, where a lot of mining activities take place and a lot of people with albinism were being killed.

Bryceson et al. focus on the albinism fetish and murders in Tanzania as being embedded in the global commodity chain. From this macro perspective they explore how different circumstances closely related to growing capitalism caused the situation of people with albinism in Tanzania to worsen. They state that the murders in Tanzania of people with albinism are connected to the gold and diamond mining that arose in mainly the lake region of Tanzania. For miners to get lucky and to stay safe when mining, they look to lucky charms. The authors of the article examine what is to blame for the atrocities by questioning the agency of people involved in the murders, since several stakeholders are involved, including the miners who buy the albinism charms or the traditional healers/witch doctors who prescribe and sell the lucky charms.

After elaborating on the topic of value and fetish, Bryceson et al. put up their central question: Why have people with albinism been fetishized to become the prized repository of exchange and use value? They explain the clash of two sub-cultures in the Tanzanian Sukumalands: the subculture of the witchdoctors and that of the miners. The gap between these subcultures is being bridged by the construction of a fetish that will provide the exchange of money and power. The miners want luck and protection that is offered to them by the witchdoctors, who in turn wants to enjoy wealth and the recognition for their power in the supernatural.

However, this does not yet explain why exactly albinism body parts became a fetish in the Tanzanian Sukumalands. Bryceson et al. explain this by looking more closely at a miner’s life which differs from rural farmer’s life in terms of work pressure, occupational risks, uncertainties and separation from home combined with occasionally possessing large sums of cash. The life of a miner is very insecure. As elsewhere in Tanzania, there are people in the mining regions that believe in the supernatural. Luck and security are seen as purchasable from the witch doctors.

The article also remarks that it is not clear why albinism body parts became a fetish. They propose a possible reason for this being that human (witch) and animal offerings for luck are more common in this area, as well as the fact that people with albinism are very rare, which might make them more ‘lucky’. They also remarks that their physical appearance and their perceived vulnerability makes them stand out. However, the article overlooks the fact that the accomplice assassins also play a large role. What motivates them? What moves parents to kill their own children?

This article is very useful for people who wish to start understanding the root causes of the albino fetish. It points to the importance of looking at society at large. For all people that want to improve the lives of people with albinism, or people with other health-related stigma, this article is an example of a step towards understanding a situation. The authors do make clear in their article that one should not think too simplistically about the situation concerning people with albinism in Tanzania. The albino fetish cannot only be eradicated through education, nor can it simply be seen as a response to capitalism. If we want to improve the wellbeing of people with albinism in Tanzania it is important to understand the multiple perspectives that cause this situation.

Tjitske de Groot
Vrije Universiteit Brussels
E mail :
groot.de.tjitske@gmail.com

 

P. Lynch, P. Lund, B. Massah, ‘Identifying strategies to enhance the educational inclusion of visually impaired children with albinism in Malawi’. IJED 39 (2014) 226-234. Available online: http://www.sciencedirect.com/science/

Oculocutaneous albinism is an inherited condition that affects the health and wellbeing of those affected by it in numerous ways. Particularly concentrated in the sub-Sahara, this form of albinism cannot be disguised: the pale pigmentation caused by lack of melanin pigment is strikingly different to the usual dark pigmentation of their peers. They are particularly vulnerable to sun damage and skin cancers; and less obviously involuntary nystagmus and other eye problems – the majority of children with albinism have less than 30% vision. Children with albinism are often stereotyped and stigmatised. Strategies that can be developed in schools and communities that cost very little but that address the health and emotional issues for children with albinism are crucial. Lynch et al have given us a useful and insightful article in this respect.

It is particularly useful because Lynch et al outline strategies for the classroom; target educators, parents, and members of the community; and importantly they include the voice and views of children with albinism. The authors address albinism from within a social model of disability framework, rather than the predominant medical model of albinism often seen in sub-Saharan countries (and indeed elsewhere). This allows Lynch et al to address successfully the social impact of the condition on educational inclusion. They effectively summarise the wider context of albinism in Malawi by detailing the cultural, political and policy aspects, underlining how government policies have yet to bring about effective change in the classroom. Whilst suggesting effective strategies for the classroom the article also emphasises a need for wider cultural change in Malawi with regards for children with albinism, for example: the mention of the number of girls attending specialist centres being especially low, fears for the safety of children with albinism and a general concern that education of children with albinism is not only difficult but pointless as people with albinism are believed to be unlikely to find employment. This article should be compulsory reading for teachers, health professionals and policymakers in sub-Saharan Africa.

Professor Julie Taylor
Director, Child Protection Research Centre
University of Edinburgh
Email: Julie.Taylor@ed.ac.uk

 

 

M. Pooe-Monyemore, T. Mavundia and A. Christianson, ‘The experience of people with oculocutaneous albinism’, Health SA Gesondheid 17.1 (2012). Available online: http://dx.doi.org/10.4102/hsag.v17i1.592

This paper focuses on the experiences of people with albinism in South Africa. It reports and discusses the results of a qualitative phenomenological study obtained through in-depth interviews with 15 people with oculocutaneous albinism from the black population of Johannesburg. A major theme was the importance of self-concept, and the recognition of the significant role of the family in enhancing self-esteem amongst people with albinism. Self-esteem was high amongst participants who were members of the Albinism Society of South Africa (ASSA). Within the wider environment, stigma and prejudice, due to skin colour and myths and superstitions, were experienced as major challenges, especially to senses of belonging. Participants expressed needs for self-development and growth. Government departments and non-government organisations have had roles in providing opportunities for health, education, employment and disability aids for them, while the private sector and media have potential but as yet unrealised roles.

The methodological approach of phenomenology was highly appropriate for the research question guiding this study with its focus on life experiences. The sample method and small sample selected were also appropriate, though participants were limited to people in contact with the ASSA, who may differ in their life experiences from those without such contact, and possible support. The description of the research design and process is detailed and provides relevant information that functions as a thorough audit of this qualitative study, supporting evidence of its authenticity and trustworthiness. However some seemed to be scattered through the article with comments about ethical considerations and trustworthiness located separately from other methodological sections, which made the writing seem disjointed at times. More focus on the participants’ experiences and words would have provided a more solid and nuanced picture of their lives and more depth to the analysis.

This small study which focuses on the life experiences of some South Africans with albinism supports other research on experiences of stigma. It is an important addition to the small but growing body of knowledge on psychosocial aspects of living with albinism in an area dominated by medical and epidemiological knowledge. Its contribution is to highlight the role of the social environment and of various services and community groups in how people experience albinism in the South African context. It also provides documented experiences from which to make recommendations about strategies to enhance and promote well-being and inclusion.

Those seeking to understand the lived experiences of people with congenital disorders and how this is affected by specific social contexts will find this article fascinating. Those concerned about how people’s lives are affected by disability, or specifically albinism, in Africa or similar countries, including service providers, will gain greater understanding and guidance on reading this scholarly paper.

Dr Jean Burke
Australian Catholic University
E mail: jeanburke76@yahoo.com.au