Teetering on the brink: Locating the voices of children: Albinism in the discourses of disability and albinism in Kenya

Group identities are not sacred glue- nor are they corrosive to it. Instead, they are some of the material affording people a sense of self and purpose in and out of the process of shaping a collective future (Minow, 1997:146) This qualitative study with an ethnographic orientation examines the discourses of disability in the context of albinism in Kenya by foregrounding children’s voices in a highly politicised debate. By applying the concept of agency, the study considers how lived experiences of children with albinism reveal the desire for autonomy in spite of shared threats that call for solidarity among members of an oppressed group. While the dominant discourse presented at the macro level by adults is that of disability and a tenuous existence, to the contrary, this unification is contested. Children and their families present more nuanced narratives and counter narratives. These show diversity within the albinism community, but which are nevertheless muted because the group affiliations confer social, economic and political state benefits. Ultimately, findings show that group identity and that of the individual serve different but nevertheless important and mutually reinforcing purposes. This calls for redefining children’s contributions in the design of programs aimed at including marginalised groups in society- especially by civil society organisations.