Positive Visibility

There has been a marked lack of international attention toward lived experiences of albinism in Sierra Leone, which is one of the poorest countries in the world. Albinism is a relatively rare recessive genetic condition that has profound implications in a context in which access to healthcare and practical support is limited. We draw on the findings of fieldwork interviews undertaken as part of our recent study “Demystifying Albinism in Sierra Leone” to highlight the challenges faced by people with albinism, including lack of access to education, healthcare, and stigmatization because of the beliefs and misconceptions associated with the condition. To counter the negativity so often associated with albinism and reported in scholarship and in the media, our project drew on these narratives and photographic images of albinism to develop effective advocacy materials in partnership with the Sierra Leone Association for People with Albinism. The project also included a series of public engagement events to enhance understanding, reduce misconceptions and stigmatization, and improve access to available healthcare provision. Here, we discuss the importance of the positive visibility of albinism and the work of stakeholders, including albinism associations and NGOs, in addressing the practical challenges faced by people with albinism in Sierra Leone, underlining the need for a concerted effort at all levels of society to ensure that people with albinism can fulfill their potential and live in security

Albinism · Context (archaeology) · General partnership · Oculocutaneous albinism · Public health · Sierra leone · Visibility · Acne and Rosacea Treatments and Effects · melanin and skin pigmentation · Race, Genetics, and Society

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• Children with albinism in African regions

  Open Access•Anita Franklin, Patricia Lund et al.•BMC International Health and…•2018

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• Having a career in disability studies without even becoming disabled! The strains of the disabled teaching body

  Fiona A Kumari Campbell, Fiona Kumari Campbell•International Journal of…•2009

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• Labeling albinism

  Giorgio Brocco•Disability & Society•2015

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• Orange in a World of Apples

  Nathalie Wan•Disability & Society•2003

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• Fragmented yet together

  Open Access•Amélie van den Brink, Willem Elbers et al.•Disability & Society•2020

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• Identifying strategies to enhance the educational inclusion of visually impaired children with albinism in Malawi

  Open Access•Paul Lynch, Patricia Lund et al.•International Journal of…•2014

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• What's so 'critical' about critical disability studies

  Helen Meekosha, Russell Shuttleworth•Australian Journal of Human Rights•2009

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• The myths surrounding people with albinism in South Africa and Zimbabwe

  Charlotte Baker, Patricia Lund et al.•Journal of African Cultural Studies•2010

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