Agency is protest against othering; participatory research exploring lived experiences of children and young Persons with Albinism in Malawian schools

• In Event: Highlighted Session: The Power of Protest to Improve Inclusive Education

Proposal

Overview: Albinism, a rare biological condition which is often categorized as a disability in African countries, produces the paucity of pigment causing Persons with Albinism (PWA) to have pale white hair, skin and eyes that are sensitive to the sunlight (Inena et al., 2020; Lynch et al., 2014; Marçon & Maia, 2019). Persons with albinism (PWA) make up only 1 in 20,000 of the global population, however the frequency of albinism is higher in sub–Saharan Africa with as many as 1 in 7,000-10,000 (Imafidon, 2021). More specifically, in Malawi, harmful cultural beliefs are among the mechanisms of othering PWA to the extent of stigma, discrimination, violence, abduction and even murder (Brocco, 2015; Tambala-Kaliati et al., 2021; Taylor et al., 2019). Children and young PWA within the primary and secondary school-age category, are more vulnerable to othering because of bullying and stigmatized labelling (Taylor et al., 2019). Regardless of this, young PWA in Malawi protest for their rights to education when demonstrating resistance against othering by enrolling into schools for the blind and/or leveraging support from positive student-teacher relations within mainstream schools. However, such narratives are scare in education and disability literature.

Objective: This study aims to: (i) explore enablers and barriers to sense of belonging in schools for children and young PWA; (ii) amplify and centre voices of young PWA through collaborative knowledge-making using participatory approaches (iii) generate evidence for policy, interventions, and mainstreaming strategies towards improved inclusive special needs education.

Theory: Othering, a concept rooted in post-colonial theory (Brons, 2015), is the process of translating difference as intrinsically questionable, undesirable and counterfeit (Imafidon, 2018). Mechanisms of othering PWA and/or difference are displayed through politics of ‘language and the power of attaching labels’ among others (Retzlaff, 2005, p.620). Othering is applied in this study as a lens for analysis.

Methodology: Data was collected from March – June 2023 in four districts in Malawi – Lilongwe, Kasungu, Zomba and Blantyre. The research processes were informed by an advisory group with PWA (n=3) formed through the Association of Persons with Albinism in Malawi (APAM), a non-profit civil society. Being a rare group, participants were sampled purposively with the advisory group playing a key role in recruiting them through schools, townships, villages and care homes. Children and young persons with albinism aged 3-23 years old (n=44) participated in this study. Data was collected through participatory workshops involving drawings and poetry as creative tools alongside focus group discussions (n=9) and interviews (n=39). Five participants were not interviewed because they were too young or had a learning disability. Participants were grouped according to age and the workshops were conducted in Chichewa the local language because it is fluently spoken by participants as compared to other languages. Transcripts, drawings and poetry were analyzed thematically.

Findings: Agency and resilience occur at the micro- & mesosystem socioecological levels. Participants reported a sense of belonging being present among family, friends and positive student-teacher relationships. At the microsystem level however, hurdles included negative student-teacher relations, bullying by schoolmates and non-inclusive classrooms. Participants reported that their primary schools had inadequately trained teachers who lacked awareness about the special needs of students with albinism such as low vision challenges. Nonetheless, participants negotiated for inclusion in the classroom by, for example, requesting that teachers accommodate their low vision challenges by enlarging handwriting on the board, or dictating notes that were written in small print books. Participants learning in special schools for the blind, mentioned other classroom inclusiveness efforts being; their desks positioned in the very front nearest to the chalk board, and the option of learning brail. Concerning peer bullying, participants also showcased their agency by resisting derogatory labels from peers such as ‘mzungu’ (white person) or ‘ndalama’ (money). ‘Ndalama’ dehumanised participants and likened them to a transactional commodity, however, their self-narratives included ‘nafeso ndife anthu’ (we are also human) and ‘ndife amodzi’ (we are one), which resulted in taking action by reporting bullies to parents or teachers. The study found that few schools had stronger reporting mechanisms and anti-bullying policies were present higher up the education ladder i.e., tertiary education and secondary schools as compared to primary schools. The nature of the school, whether government-run or privately-owned school, also influenced degrees of tolerance and response towards bullying children with albinism.

Conclusion: Regardless of barriers to inclusive education, some children and young PWA are progressing within systems that are hostile for their survival, with some even reaching tertiary education. Among barriers overcome are negative labeling yet ‘refusing to wear externally constructed and imposed labels is one form of resistance and thus one form of resisting hegemonic power structures’ (Retzlaff, 2005, p.620). This study argues that facilitating sense belonging through positive peer and teacher relations in schools can improve inclusive education for special needs learners in Malawi.

Author

• Elita Chamdimba, University of Strathclyde