The photo was taken on August 29, 2024, at The Aga Khan University after a fruitful discussion between the student interns of the Mothering & Albinism 2024 cohort (Ackremson Majaliwa and Augustine Gerald) with mentor Dr. Eunice Siaity-Pallangyo from Aga Khan University, Tanzania, and albinism and disability advocate and team member, Ms. Perpetua Senkoro from the Tanzania Human Rights Defenders Coalition.
We were thrilled to meet with Dr. Siaity-Pallangyo and Ms. Senkoro, who are deeply involved in the project on Mothering & Albinism. They provided us with a background on the project, which started in 2017. The main focus of the current Birthing Stories project is to engage with healthcare providers to address the knowledge gap identified in their curriculum regarding albinism and the challenges people with albinism and their families face, particularly at the time of the birth of a baby with albinism and accessing health services.
Ms. Perpetua Senkoro shared her experience recounting a visit to a peripheral (local) hospital where a nurse asked her, “Nasikia nyie huwa hamfi, mnapotea tu” (“I hear you people never die; you just disappear”). This statement highlights the misconceptions healthcare providers have about albinism. Ms. Senkoro’s experience stresses the importance of integrating cultural competence and educating healthcare providers about albinism, which would improve the care provided to individuals with the condition. It also emphasizes the need for healthcare providers to approach clients and patients with dignity and respect. There is an essential need for healthcare providers to be educated on how to provide compassionate, empathetic, and respectful care to all patients.
The key messages gathered while interacting with Ms. Senkoro were insightful. From her encounter with a healthcare provider, it became clear how myths and misconceptions, such as those surrounding people with albinism, can influence healthcare providers attitudes and behaviors. It is crucial to listen to patients’ concerns without judgment and to avoid using language that perpetuates stigma. As interns and healthcare providers, we need to consistently strive to understand the cultural backgrounds, beliefs, and perspectives of the patients we encounter. This understanding is particularly crucial for individuals from marginalized communities, such as those with albinism. Our goal as interns is to ensure that when providing care/health services, we place the patients’ needs and experiences at the forefront of care, to foster a healthcare environment that is both respectful and well-informed.
In the Lake Zone of Tanzania, people with albinism are sometimes referred to as “mbuzi mweupe” (“white goat”). Our engagement with Ms. Senkoro and Dr. Siaity-Pallangyo highlights the opportunity we have to educate our peers, fellow students and communities about the medical and social issues associated with albinism and other conditions. Ms. Senkoro taught us the significance of advocacy in healthcare. She also highlighted the importance of recognizing individuals as people first, rather than defining them by their condition. She stressed the need to identify individuals by their personhood, rather than focusing on their albinism.
We look forward to more learning opportunities such as this meeting with Dr. Siaity-Pallangyo and Ms. Senkoro during our internships.
Authors:
Ackremson Majaliwa, student intern 2024-2025, Aga Khan University, Tanzania
Augustine Gerald, student intern 2024-2025, Aga Khan University, Tanzania
Mothering & Albinism 