Positive Visibility: Demystifying Albinism in Sierra Leone

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.