A Storytelling Film Project to Centre the Voices of Tanzanian Mothers impacted by Albinism

Storytelling in film is one way that academic research can be communicated to the public, so social change can follow (Karabanow & Naylor, 2015; Richmond, 2016; Sharma, Reimer-Kirkham, & Meyerhoff, 2011).

How can telling stories through film change community attitudes?

Their voices: Upendo wa Mamas (‘Mother’s Love’ in Swahili) is a support and income generating group of women impacted by albinism. As women with lived experience being mothers with albinism themselves or as mothers who have children with albinism in Tanzania, we centre their voices as advocates and human rights defenders through storytelling in film.

Setting of the Film Project: Following formal consent from those involved, filming took place in Mwanza, Tanzania at the Upendo wa Mamas store front, called The Hive. Filming at this location was a way to highlight their work to a broader audience.

The Production Process:  Tanzanian filmmaker, Ezekiel Mkusa, was commissioned to create the mini-documentary. He had connections with the albinism community related to his previous work with Tanzanian non-profit organizations, and spent a day with Upendo wa Mamas in the Hive.  Perpetua Senkoro (human rights officer, research team member, and Knowledge Translation Facilitator for the Mothering & Albinism project) coordinated with the Upendo wa Mamas and the research team as to what the main message of the film might be, and worked on logistical arrangements with Ezekiel.

Perpetua, herself a mother with albinism, joined as one of the spokespersons on the film. She says, “when I watched the footage for the first time, I cried…because their stories and struggle felt very real and familiar. All I wanted from there was to make them as understandable as possible, so that whomever listens to them gets as touched as I was, and moved to take action. That’s what drove me to add my story to be part of the video”.

Venue of the Film’s Debut: The first audience for the film was a group of Tanzanian faith leaders. Beginning November 27, 2021, the Mothering & Albinism Tanzania team co-hosted a virtual Faith Leaders’ Summit with Upendo wa Mamas Mwanza (Tanzania), Perpetua Senkoro (Knowledge Translation Facilitator, TZ), Kondo Seif (Knowledge Translation Facilitator, TZ), and Reverend Canon Thomas Godda Muyya (Chair, Interreligious Council for Peace Tanzania). The focus of the 4-seminar Summit series was on the role of faith leaders in the advocacy for mothers impacted by albinism. While our initial plans were for a face-face-face Summit in Mwanza, including a faith leaders visit the Upendo wa Mamas’ storefront to better understand their living and working context, the shift to a film as a storytelling tool served as an alternative avenue to highlight the Upendo wa Mamas stories.

The film’s debut at the first Summit set the tone for the seminar series and created the space for ongoing contributions of women from Upendo wa Mamas during the Summit series (November 2021 – January 2022). They provided lived experience and counsel to faith leaders’ discussions of their role in education and advocacy. On a number of occasions in the Summit meetings, a participant directed a question to the mothers or asked for their guidance and input. Not only were the mothers able to witness the discussions among faith leaders, they were also able to share their concerns and needs and participate in devising strategies with faith leaders on best practices to promote their human rights. The voices of mothers directly impacted by albinism in Tanzania have been powerful, providing leadership and legitimacy to proposed actions and mobilization coming out of the Summit.

We are pleased to share this same video with the explicit consent of all involved in its production. We welcome you to share the video on your social media platforms, and to use the video as a teaching tool in community education. (Please credit as: Mothering & Albinism Project, Tanzania (November 2021). Ezekiel Mkusa Productions).

Aikande Stephano, the coordinator of the Upendo wa Mamas group, shared that the film’s stories “can help to create a society that appreciates persons with albinism the way God made them. When society understands their potential, and gives them opportunities in places like the church, the community, workplaces, government sectors, political realms and in so many other places – this can reduce or totally diminish the challenges that people with albinism have been passing through”.

Upendo wa Mamas can be supported through purchases of their beeswax products through their website and their storefront in Mwanza on Makongoro Road.

In forthcoming posts, we will further outline the Summit series and proposed actions by faith leaders as a result of this engagement.

References:

Karabanow, J., & Naylor, T. (2015). Using art to tell stories and build safe spaces: Transforming academic research into action. Canadian Journal of Community Mental Health, 34(3), 67-85.

Richmond, C. A. (2016). Applying decolonizing methodologies in environment-health research: A community-based film project with Anishinabe communities. In Practicing qualitative methods in health geographies (pp. 173-186). Routledge.

Sharma, S., Reimer-Kirkham, S., & Meyerhoff, H. (2011). Filmmaking with Aboriginal youth for Type 2 Diabetes prevention. Pimatisiwin, 9(2), 423.

Written by:

Emma Strobell, MSN RN, Project Coordinator

Dr. Sheryl Reimer-Kirkham, Project Lead

Meghann Buyco, MSN student, Graduate Research Assistant

Dr. Barbara Astle, Project Co-Lead

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