Emma Strobell defended her Master’s thesis, “Exploring the Experience of Mothers who have Children with Albinism in Tanzania: A Critical Ethnography” (see abstract below) on March 16, 2020 and offers her reflections here:
As I defended my thesis research, questions from my committee of examiners caused me to consider again how I read the data from my position as outsider. How might someone from Tanzania, impacted themselves by albinism, read the stories I gathered from mamas I had the opportunity to interview? Positionality and reflexivity were key qualitative research practices embedded within my research method, critical ethnography, but what does that mean in practice and how can I thoughtfully continue to consider other angles?
Because the need for social change is at the core of this research on albinism and human rights, considering positionality is crucial (Madison, 2005). Positionality asks me as researcher to actively acknowledge my “own power, privilege, and biases just as [I] am denouncing the power structures that surround” the concerns of mothers impacted by albinism (Madison, 2005, p. 7). Reflexivity, particularly throughout fieldwork, occurs when I as researcher recognize the “need to have an ongoing conversation about the experience while simultaneously living the moment” and staying curious about how my own “values and views may influence findings” (Jootun, McGhee, and Marland, 2009, p. 42; Streubert & Rinaldi Carpenter, 2011, p. 174). This can occur through reflexive journaling, both guided with explicit questions as well as free form. For me, I journaled throughout my time in the field, had regular communication with my thesis committee, and, most valuable, I had ongoing dialogue with partners in the field, including my colleague who was the cultural liaison in the field. Despite my efforts, I know blind spots remain. However, such a practice throughout qualitative research adds to a study’s credibility (Jootun et al., 2009; Primeau, 2003). Paying lip service to these practices as mere research concepts not only risks jeopardizing study outcomes, it risks reinforcing colonial histories and exploiting the stories shared by research participants. Both of which should concern researchers and those who choose to participate. Humility and authentic partnerships, both key principles outlined by the Canadian Coalition for Global Health Research (2015), are imperative.
We work in partnership with a multi-national, multi-disciplinary research team that continues to speak into the research on mothering, human rights, and albinism. My thesis is but one reading of this data. While certainly influenced by several partners in the field and within our research team (e.g., conversations with interpreters and cultural liaison in the field, NGO/CSO partners, and academic research partners from Nigeria, Ghana, and South Africa), my thesis offers a place to start the conversation. With Kromberg, Zwane, and Jenkins’ (1987) study that assessed bonding between Black South African mothers and their babies born with albinism remaining the only research specific to the mothering experience in 32 years, my thesis research builds on this, picking up a new conversation.
My thesis served as the pilot study now embedded within this 4-year, SSHRC funded program of research on mothering and albinism in Tanzania, South Africa, and Ghana. I look forward to continuing to engage our partners on how they ‘read the data’ from their standpoint: What does resilience mean in these varying contexts? How do they interpret the experience of mothering in the context of albinism differently between Tanzania, South Africa, Ghana, and Nigeria (as we have partners within each of these countries who can speak to the context)? What is helpful and unhelpful about outsiders (like myself) exploring this experience?
How do we work together—partnering across borders and oceans— in solidarity with mamas impacted by albinism working to improve their circumstances?
Little is understood about the everyday lives of mothers of children with albinism in sub-Saharan Africa, specifically Tanzania. This region has a harrowing history of discrimination and violent attacks against persons with albinism, largely rooted in cultural/spiritual beliefs and practices, and perpetuated by layers of myth about albinism. A focused critical ethnographic study, through the lens of Hudson-Weems’ (2019) Africana Womanism, explored the experiences of mothers of children with albinism in Tanzania, addressed the gendered nature of this condition, and considered the human rights and resilience of the mothers. One participant’s story illuminated human rights and resilience from a mother’s standpoint, which was the backdrop for the presentation of findings that included stories of other mothers with albinism and the perspectives of key stakeholders. These findings highlight the social ecological nature of resilience for these mothers. Recommendations focus on policy, advocacy, and research related to health and social services and education.
Link to thesis: https://twu.arcabc.ca/islandora/object/twu%3A623
Cite as: Strobell, E. (2020). Exploring the Experience of Mothers Who Have Children with Albinism in Tanzania: A Critical Ethnography. Unpublished master’s thesis. Trinity Western University.
Hudson-Weems, C. (2019). Africana womanism: Reclaiming ourselves (5th ed.). New York: Routledge.
Jootun, D., McGhee, G., & Marland, G. (2009). Reflexivity: Promoting rigour in qualitative research. Nursing Standard, 23(23), 42–46. doi.org/10.7748/ns2009.02.23.23.42.c6800
Kromberg, J. G., Zwane, E. M., & Jenkins, T. (1987). The response of black mothers to the birth of an albino infant. American Journal of Diseases of Children, 141(8), 911-916.
Madison, D. S. (2005). Critical ethnography: Method, ethics, and performance. Thousand Oaks: Sage.
Primeau, L. (2003). Reflections on self in qualitative research: Stories of family. American Journal of Occupational Therapy, 57(1), 9-16.
Streubert, H. J., & Rinaldi Carpenter, D. (2011). Qualitative research in nursing: Advancing the humanistic imperative. Philadelphia: Wolters Kluwer.