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Kiishweko, Rose Rutagemwa.pdf (1.22 MB)

Albinism in Tanzanian higher education: a case study

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posted on 2023-06-09, 05:45 authored by Rose Rutagemwa Kiishweko
My thesis focuses on the experiences of people with albinism in higher education (HE) in Tanzania. Albinism is a genetically inherited condition and it affects people of all ethnic backgrounds worldwide. In Tanzania, the condition affects one in every 1,400 people. People with albinism in Tanzania often face social discrimination, superstition, and prejudice including murder threats due to myths and beliefs that their body parts are a source of wealth and prosperity. They also experience physical challenges including threats from the African tropical sun and visual impairment. All these factors interact with educational opportunities. Information about the oppression, killings and amputation of body parts of people with albinism in Tanzania has been widely reported in the media globally. However, albinism remains socially under-researched and under-theorized – especially in relation to how it interacts with HE opportunity structures. This research attempts to contribute to existing literature and construct new insights into albinism and HE. In so doing, I draw upon a range of theoretical approaches including Sarah Ahmed’s concept of affective economies and fear of difference, Margaret Archer’s notions of the internal conversation and reflexivity as well as various established feminist theorists such as Simone de Beauvoir to analyse and explain issues arising from the study including misogyny. I also draw upon Pierre Bourdieu’s concept of symbolic violence. My research is a case study of albinism in HE in Tanzania. Using qualitative methods I draw upon feminist methodological approaches, values and principles to explore albinism and explain what constrains and enables students with the condition to interact with HE opportunities. The data for this research were collected from 35 participants in Tanzania, namely: 14 students with albinism (involving current and graduate students with albinism); six teaching staff and five HE support staff members. Other participants included officials from four non-governmental organisations (NGOs), four government officials, one parent and one student reader/note-taker. I conducted 19 face-to-face semi-structured interviews with six current students with albinism, three teaching staff, four NGO officials and four government officials. Likewise, I conducted face-to-face semi-structured interviews with one parent and one student reader. I also conducted one Skype interview with a current student with albinism as well as three focus groups discussions with 14 participants. The first group was of seven graduates with albinism, the second involved three teaching staff and the third was of four HE support staff. I also used desk-based research methods, conducting telephone conversations with 52 statistics officers in order to investigate where students with albinism are located within HE in Tanzania. Looking at literature and my research questions, the data were then compared across different participants and universities to establish patterns and common themes among them. The findings from this research indicated that the systems of power that work to oppress people with albinism are multifaceted with structural, cultural and socio-economic conditions. Some key findings included how people with albinism were subjected to misogyny, myths and fear of the ‘other’. However, the 14 students with albinism in this study demonstrated a high level of agency, creativity, autonomy and motivation to improve their lives and thus overcome discriminatory social structures, oppression and harassment. They also illustrated their commitments to contribute usefully to society despite the constraints and limited support that they often encountered. Access to HE was seen as a major way to transform their identity by challenging deeply ingrained social prejudices, which often label people with albinism as having limited cognitive capacity. The implications of this research are that government commitment will be required in order to allocate sufficient funds to promote awareness of, and create change about, albinism and the elimination of household poverty, particularly that of female-headed households (FHH), as well as to adequately finance HE institutions so they can put in place support services and arrangements for students with albinism.


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