An international network of scholars, advocates, civil society stakeholders, and policymakers from Canada, South Africa, Ghana, Tanzania, and the United Kingdom, as part of their project titled “A Human Rights and Equity-Oriented Response to the Birth Stories of Families Impacted by Albinism in Sub-Saharan Africa: Intersectoral Partnerships for Enhanced Health Professions’ Education”, convened for a three-day engagement workshop in Pretoria from October 2 to October 4, 2023. Profs. RS Mooa, R Leech, and Dr. TV Nesengani from the Department of Nursing Science, University of Pretoria, hosted the second day of this event, the 'Mothering and Albinism' seminar at Prinshof Campus. The purpose of the seminar was to bring together mothers impacted by albinism, scholars, educators, policymakers, civil society stakeholders, and students to envision improved birth experiences for mothers of babies with albinism.

The day commenced with a warm welcome from the Chair of the School of Healthcare Sciences at UP, followed by Prof. Shirley Mooa, who heads the Department of Nursing Science at UP, taking on the role of programme director. The morning session saw the introduction of the 'Nursing and Midwifery in Africa and North America' panel, where nursing academics gathered to discuss the critical topic of 'Respectful Maternity Care.' Several experts shared their insights and experiences, shedding light on the challenges and opportunities in the realm of maternal care.

Experts Convene to Address Critical Issues in Albinism, Motherhood, and Human Rights

On Tanzanian birthing practices, Dr. Eunice Saity-Pellangyo, from Agha Khan University, emphasised the role of socio-economic status in determining access to quality obstetric and gynaecological care, drawing attention to the disparities in healthcare quality between the public and private sectors. With the quality of healthcare disproportionately divided between mothers who are subjected to the severely under-resourced public healthcare system versus those who can access private healthcare, Dr. Eunice emphasised the need for further training of midwives, as they play a significant role in childbirth, to close the gap caused by the poor quality of care in public facilities, specifically as it concerns the nursing practices that cater for the needs of people living with disabilities such as albinism.

Noteworthy insights emerged from Dr. Kendra Rieger’s input about respectful maternity care, particularly in Canada, where the majority of deliveries occur within the hospital setting. The involvement of midwives in childbirth was highlighted, underscoring the importance of midwifery in the healthcare system.

The discussions delved into gaps in nursing practices and curricula in Ghana, as pointed out by Dr. Lillian Ohene, who highlighted the correlation between high patient volumes and the reliance on traditional and spiritual birth attendants.

The importance of autonomy in respectful maternity care was discussed by Prof. Lydia Azato, who noted the limitations midwives face in acknowledging and honouring the autonomy of their patients.

The seminar also featured contributions from experts from the University of Pretoria, including Dr. Victoria Nesengani and Prof. Ronell Leech. They shared insights on birthing and albinism in Africa.

Dr. Nesengani pointed out that the bifurcation of the healthcare system was not unique to the Tanzanian experience but a shared reality with South Africa. She shared that the public healthcare system caters to the needs of most South Africans, emphasising the existence of the maternal obstetric units, which involve advanced midwives in providing antenatal care and even assisting in low-risk deliveries where there is a need.

Prof. Leech gave an overview of the regulation of nursing education in South Africa and the different educational pathways that exist to allow entry into practice as a registered nurse and midwife. She gave key inputs into the incorporation of respectful maternity care in nursing education and practice, noting that nurses training in South Africa does equip them to respectfully navigate the religious and cultural diversity of South Africa. However, traditional birth attendants are yet to be formally incorporated into the curricula.

A newly minted nursing PhD, Dr. Maureen Musie of UP’s Department of Nursing Science, presented her findings, highlighting the role of traditional birth attendants in primary obstetric healthcare. As one of the key themes discussed throughout the seminar concerned the decolonization of birthing practices and the need to debunk myths surrounding the births of children with albinism, Dr. Musie’s discussion of the regulation of traditional birthing practices through the Traditional Health Practitioners Act as well as the Traditional Health Organisation SA was timely and relevant to the discussions, as she concluded by emphasising the need for respectful maternity care practices as one of the ways to improve birthing experiences for mothers who birth children with albinism.

The seminar also featured renowned genetics professor Jennifer Kromberg, who discussed genetic counselling and albinism in South Africa. The importance of further education to help families understand albinism as a genetic condition was highlighted.

Dr. Elvis Imafidon, from the SOAS University of London, in his presentation, titled "An African Perspective on Corporeality and Birthing Stories," emphasised the need to centre the ambivalent nature of a healthcare practitioner's conception of the body in the education of healthcare professionals.

The subsequent panel discussions laid the foundation for exploring motherhood and albinism from a higher education perspective. Prof. Shirley Mooa highlighted the significance of decoloniality in higher education and the importance of recognising non-mainstream sources of knowledge.

Prof. Lori Beaman, in Classics and Religious Studies in the Faculty of Arts at the University of Ottawa, emphasised the concept of "deep equality" and advocated for the incorporation of vernacularized human rights in discussions about birthing experiences.

Janet Gbam, a PhD candidate at the Centre for Human Rights, University of Pretoria, stressed the need for inclusive human rights education in tertiary institutions to make human rights accessible and inspire civic engagement.

Prof. Wisdom Tettey, the Vice President of the University of Toronto and professor of political science and development studies, called for a re-evaluation of the lexicon used in popular discourses about people with albinism, particularly addressing degrading language in media and public discourse.

Prof. Bonny Ibhawoh, the Senator William McMaster Chair in Global Human Rights at McMaster University, expressed support for rights-respecting language within the disability rights movement, highlighting the term "melanin privilege" as a rights-respecting and condition-specific language that could be valuable in developing effective human rights law.

The final panel was dedicated to "Enhancing Services for Persons with Albinism and Families." Dr. Boateng Wiafe, the Regional Director of Operation Eyesight Universal, Ghana, discussed access to eye care for persons with albinism, emphasising early-age intervention as essential.

Tumisho Mokwele, a PhD student in the Department of Nursing Science at the University of Pretoria, presented her review of community responses to children with albinism, echoing the call for an integrated approach from human rights perspectives.

Meghann Buyco, the project coordinator of the Mothering and Albinism research project, shared her research on family-centred care, highlighting the unique vulnerabilities and stigmatisation experienced by individuals with albinism, their parents, and siblings.

Monica Araujo discussed the availability of genetic counselling in South Africa. At the same time, Mukhethwa Audrey Mavhungu, a final-year UP nursing student, highlighted the disparities within the South African healthcare system that can impede access to quality healthcare for individuals affected by albinism.

The seminar, with its diverse range of perspectives and expert insights, promises to have a profound impact on the understanding and addressing of issues related to albinism, motherhood, and human rights in the African context. The depth of discussion and the wealth of knowledge shared by experts from various fields provide a solid foundation for future endeavours in this critical area. This seminar has undeniably furthered the dialogue on improving the well-being and rights of individuals with albinism in the African context.