Trajectories of albinism: Subjectivities, experiences, and narratives in Tanzania

This dissertation intends to document the life experiences and socio-economic conditions of people with albinism living in the areas of Dar es Salaam and south-central Tanzania and the areas of Iringa town, Kilolo district, and Ilula ward (Kilolo district, Iringa region). The focus of the analysis concerns not only the daily living experiences of persons with albinism but the multiple ways in which they relate to each other in their everyday experiences, talk about their condition, create various networks of relatedness and care, and critically participate in the media discussions and humanitarian/human rights activities about their condition.
The ethnographic fieldwork upon which this dissertation is based was carried out during two main research stays of a total duration of 18 months (2012-2015). Besides the implementation of various stages of participant observation among people with albinism, I carried out a total of 104 semi-structured interviews with persons with albinism, their relatives and caretakers, health officials, traditional healers, and religious leaders (Muslim and Christian/Catholic and Pentecostal), political representatives, and NGO members.
Through the analysis of the vast ethnographic data and information, two original theoretical frameworks allowed me to comprehend social experiences of people with albinism in Tanzania. These concepts are ‘biological subjectivities’ and ‘alternative enfleshments’. The first notion underlines the ways social experiences, the inner selves, and emotional states of people with non-normative bodies (characterized by albinism or light skin in the present case) interact, conflict, intertwine with, and are influenced by political and media debates, humanitarian actions, and activist involvements. Alternative enfleshments of albinism describes the collective synthesis of biopolitical (media and humanitarian) ordering, individual practices, and modes of relationality around forms of non-normative human difference. By making these two theoretical concepts operational, the analysis reveals three relevant orders of data about the social, economic, and political experiences of albinism in Tanzania.
Without taking for granted the historical facts behind the biomedical explanations of albinism, the analysis underlines multiple genealogical trajectories of the condition between the global North and several African regions from the 16th century up until today. Exciding the biomedical definition of the condition, the data thereby illustrate the multiple understandings of albinism in diachronic and synchronic ways. Additionally, the analysis highlights the reasons behind the spate of medicine murders of people with albinism in Tanzania and other African regions
Furthermore, the analysis specifically concerns the social experiences of people with albinism in Tanzania. The ethnographic material highlights that subjective experiences of bodies with albinism depend on and are influenced by social attitudes, networks of relatedness, socio-economic circumstances, and narratives propagated by the media as well as governmental and non-governmental organizations. While some of people with albinism conceive the condition in terms of a diverse physical appearance that does not undermine daily able-bodied activities, and therefore try to align themselves with actions conducted by normative bodies, other social actors remark their different corporeal features with all the socio-political connotations attached to such claims.
Through an analysis of media narratives, humanitarian actions, and activist initiatives, the study finally demonstrates the multiple disjuncture between discourses on the conditions, produced by national and international media and humanitarian actors, and the daily life experiences of my research participants. While NGOs, governmental entities, and the media emphasized the constitution of biosocial connections among people with albinism around narratives of and practices about victimhood, deservingness and the equation of the condition with a disability, my Tanzanian interlocutors constituted and experienced alternative versions of such enfleshments.