“Black people with a white skin, who are disabled, but not disabled enough”: The particularity of albinism in African contexts.
Oculocutaneous albinism is a recessive genetic condition that results in a reduction of the pigment melanin in the hair, skin and eyes. Therefore, people with albinism have pale skin, light hair and experience some degree of visual impairment. Their skin is vulnerable to sun damage and, in sub-Saharan Africa, many lose their life to skin cancer by the age of 40. In addition, the visibility of people with albinism makes them a target of discrimination, and the various beliefs and explanations attached to this condition often lead to harm.
Charlotte will discuss the challenges faced by people with albinism in African contexts and will speak about her collaborative work with albinism associations, NGOs and international organizations to tackle negative attitudes and behaviours towards people with albinism. She will consider the extent to which it is useful to focus on the particularity of albinism or to consider albinism as a disability, and will underline the importance of a coherent and sustained agenda for change.
