Mapping patterns of resilience at the juncture of gender, colourism, religion, and human rights
Nsindiso Masiya, an undergraduate nursing student and intern from the University of Pretoria in South Africa, responds to a Digital Story created by a mother with a child with albinism. He says: A mother's story, “The Long Road to Acceptance,” resonated deeply with me because it highlighted the painful reality of rejection, stigma, and discrimination… Continue reading A Nursing Student’s Reflection on a Digital Story about the “The Long Road to Acceptance”
Photo Credit: Patricia Willocq's White Ebony Collection Over the past year, I (Tunu Kibe) have had the opportunity to intern with Mothering and Albinism, a research project dedicated to researching and addressing the stigma and discrimination that mothers of children with albinism, or mothers with albinism, face in healthcare and in their communities. Coming into… Continue reading The Power of Policy: Creating a Policy Brief for Disability-Inclusive Maternity Care. Student intern Reflection
https://youtu.be/ie6qDrrNFBY Anitha Francis Mganga, an intern from Aga Khan University in Tanzania, writes: When I joined the Mothering & Albinism Project as a student intern, I came with a background in midwifery and maternal and child health, practicing in Tanzania. I understood the importance of respectful, family-centered care. However, this internship has challenged me to… Continue reading Seeing the Family, Not Just the Diagnosis: A Midwife’s Reflection from the Mothering & Albinism Project
Kizito Koinet Kileu, an intern from Aga Khan University in Tanzania, reflects: https://youtu.be/eMnDmPPdoEc Participating in the Mothering and Albinism Project as a student intern has been one of the most meaningful learning experiences of my academic journey. As a nursing student, I initially understood albinism mainly as a genetic condition affecting skin pigmentation, vision, and… Continue reading Personal Reflections: Internship Experience Supporting the Development of the Care Pathway Guideline
Over the past year, we have been hearing from mothers, fathers, and community members (healthcare providers and health educators, advocates, and policymakers) through interviews and focus groups conducted as part of our research on perinatal experiences of mothers giving birth to a baby with albinism. We have now moved into Phase III (Create) of our… Continue reading “Reamogeleng” (Accept Us): A Digital Story Reflection in Honour of International Albinism Awareness Day June 13, 2026
Congratulations to Peter Ash, founder and CEO of Under the Same Sun (UTSS), on the release of his auto-biography that weaves together firsthand accounts of Tanzanian children with albinism with his own story. Members of the Mothering and Albinism network (Photo: Left to Right Kendra Rieger, IK Ero, Barb Astle, Peter Ash, Sheryl Reimer-Kirkham, Ingrid… Continue reading Book release: Out of the Ashes by Peter Ash
By collectively developing creative resources, we are bringing alive the birth stories of our team members/participants, and meaningfully integrating learning from our intersectoral collaborations and research findings.
Did you know? Little research has been conducted in Canada on the psychosocial experiences of mothers impacted by albinism, the experiences of their families, their journey in accessing healthcare services, and their enjoyment of human rights. Even the incidence of albinism in Canada has a question mark, estimated to be 1 in 20,000. When this… Continue reading Albinism Birthing Stories in Canada
Involving students in an internship within a research project is valuable for both the learners and the coalition of research and communities. Each year, the Mothering & Albinism network welcomes student interns with varied lived experiences, disciplinary perspectives, and cultural frameworks to enrich the project’s research and advocacy efforts by broadening how discrimination, stigma, and… Continue reading Birthing Stories Project: Student Interns 2025
In the past months, Mothering & Albinism team members have presented our work at two international conferences. African Studies Association, Chicago, IL, December 2024 Our team took advantage of the opportunity to present the work of our Mothering and Albinism Network at the African Studies Association Annual Meeting in Chicago in December 2024. This venue… Continue reading International Presentations by Mothering & Albinism Team in Chicago USA and Lancaster UK
Mothering & Albinism 