In the past decade, the human rights violations, ranging from stigma and discrimination to acts of violence and attacks, experienced by persons with albinism have reached global attention, calling for immediate solutions and longer-term interventions to focus on the root causes. In April 2015, the Human Rights Council adopted the A/HRC/RES/28/6 resolution without a vote to establish the mandate of an Independent Expert on the enjoyment of human rights by persons with albinism. Ikponwosa Ero was the first person appointed to address this mandate (United Nations General Assembly [UNGA], 2015). Since this official appointment, increasing policy, advocacy, and research have focused on albinism and human rights. Human rights instruments, such as the Regional Action Plan on Albinism (UNGA, 2017) and the A/HRC/RES/47/8 Resolution on the Elimination of Harmful Practices Related to Accusations of Witchcraft and Ritual Attacks (UNGA, 2021) have been important outcomes of the work of the UN Independent Expert. Civil Society Organizations (CSOs) (such as Under the Same Sun, Standing Voice, Albinism Society of South Africa, and Albinism Advocacy for Access) have raised awareness to educate communities about albinism and provided resources, such as access to medical services for persons with albinism and their families.
In 2015, Ikponwosa Ero invited Dr. Sheryl Reimer-Kirkham (Dean, Trinity Western University School of Nursing) and Dr. Barbara Astle (Director, Trinity Western University Masters in Nursing) to support the mandate by providing research expertise on spirituality, equity, and global health. Initially, the research team conducted a scoping review to map the current state of knowledge on albinism, spiritual and cultural practices, and implications for health and healthcare services (Reimer-Kirkham et al., 2019). This provided a better understanding of the major researchers and their geographic locations globally, alongside other organizations dedicated to this area of study, and themes which led to a meta-review including human rights. These two reviews were foundational in laying the groundwork for the establishment of a research/advocacy/policy network for future research that is intersectoral, interdisciplinary, and led by scholars in Africa. This was followed by a synthesis of peer-reviewed and grey literature at the nexus of albinism, spiritual and cultural beliefs and practices, and human rights (Reimer-Kirkham et al., forthcoming). This background was used to conduct a priority-setting survey, informed by Delphi methods to determine the extant knowledge-practice gaps and research, advocacy, and policy priorities. In September 2018, Reimer-Kirkham, Astle and Ero (co-leads of the research) assembled a group of 35 researchers, CSOs stakeholders, and policy-makers in Geneva for a roundtable summit to discuss and gain consensus on these priorities (UNGA, 2019). This led to centering this research teams’ work on mothering and albinism as they recognized the disproportionate impact of being a mother with albinism or being a mother with a child with albinism specifically in an African context. Often, they are blamed for giving birth to a child with albinism, leading to abandonment from families and social exclusion from the community. Mothers are central to the story of a family impacted by albinism and they are often the ones who advocate for their children. Thus, this was followed by an ethnographic qualitative study on mothering and albinism (Ero et al., in press; Ibhawoh et al., 2022; Reimer-Kirkham et al., 2020, Strobell, 2020), and other publications.
During the course of this research, we conducted in-person and virtual fieldwork in Tanzania and South Africa and expand our project team by building relationships with members from South Africa and Ghana. We initially met Mgijima-Konopi and made other South African connections at the Roundtable Summit in 2018, which continued to partner with us in our joint research. In 2019, Emma Strobell, research associate, visited the University of Pretoria Centre for Human Rights, re-connecting us with Innocentia Mgijima-Konopi who at the time was the Project Manager of Disability Rights and Law Schools Programme. Our relationships with our partners allowed us to continue to collaborate in moving this research forward because of our shared interests. From South Africa, Dr. Shirley Mooa (who Dr. Astle previously knew from working with her a decade ago on other research) has joined as a co-lead. In addition, as our original plan was to expand to Ghana, we approached the University of Ghana in Accra (where Dr. Astle also had previous relationships with some Nursing Scholars), Drs. Lydia Aziato, Mary Ani Amponsah and Lillian Ohene to be collaborators on this next research project.
With the Mothering and Albinism research in its sixth year, Dr. Reimer-Kirkham, along with co-leads, Dr. Mooa (Head of the Nursing Science Department, University of Pretoria) Dr. Astle, and Ms. Ero (Director, Human Rights Advocacy for Under the Same Sun and Technical Advisor, African Albinism Network) are leading a team of researchers to examine how health professions education can be strengthened through intersectoral partnership on perinatal care study for families impacted by albinism. The study is entitled, “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”. The aim of the study is to protect and promote the human rights of persons with albinism, including their welfare and security, social determinants of health, and gender equity. This research project is being funded by the Canadian Institutes of Health Research (CIHR) with an international and multidisciplinary team from seven countries (Canada, South Africa, Ghana, Tanzania, Nigeria, Zambia, United Kingdom), including the current Independent Expert on the enjoyment of human rights by persons with albinism, Muluka-Anne Miti-Drummond. Please click here to view the full team.
We are looking forward to working alongside our international interdisciplinary team in support of ensuring the enjoyment of human rights by persons with albinism.
References
Ero, I., Reimer-Kirkham, S., Astle, B., Strobell, E., & Buyco, M. (in press). Women human rights defenders: Case of activism of mothers of children with albinism in Tanzania. In Handbook of Disability: Critical Thought, Human Rights and Social Change in a Globalizing World. Springer.
Ibhawoh, B., Reimer-Kirkham, S., Ero, I., Mgijima-Konopi, I., Beaman, L., Senkoro, P., Astle, B., Strobell, E., & Imafidon, E. (2022). Shifting wrongs to rights: Lessons in human rights from the situation of mothers impacted by albinism in Africa. Journal of Human Rights Practice. https://doi.org/10.1093/jhuman/huac038
Reimer-Kirkham, S., Astle, B., Ero, I., Beaman, L., Ibhawoh, B., Imafidon, E., Sawatzky, R., Tettey, W., Buyco, M. & Strobell, E. (forthcoming). Mapping a research-advocacy-policy agenda on human rights and albinism: A mixed methods project.
Reimer-Kirkham, S., Astle, B., Ero, I., Imafidon, E., & Strobell, E. (2020). The disproportionate impact of health-related stigma and associated worldviews on the security and wellbeing of mothers affected by albinism. Journal of Foundation of Science. https://doi.org/10.1007/s10699-020-09701-0
Reimer-Kirkham, S., Astle, B., Ero, I., Panchuk, K., & Dixon, D. (2019). Albinism, spiritual and cultural practices, and implications for health, healthcare, and human rights: a scoping review. Disability & Society, 34(5), 747-774. https://doi.org/10.1080/09687599.2019.1566051
Strobell, E. (2020). Exploring the experience of mothers who have children with albinism in Tanzania: A critical ethnography [Master’s thesis, Trinity Western University]. https://twu.arcabc.ca/islandora/object/twu%3A623
United Nations General Assembly (UNGA). (2015). Independent Expert on the enjoyment of human rights by persons with albinism (A/HRC/RES/28/6). https://undocs.org/Home/Mobile?FinalSymbol=A%2FHRC%2FRES%2F28%2F6&Language=E&DeviceType=Desktop&LangRequested=False
United Nations General Assembly (UNGA). (2017). Report of the Independent Expert on the enjoyment of human rights by persons with albinism on the Regional Action Plan on Albinism in Africa (2017–2021) (A/HRC/37/57/Add.3). https://undocs.org/Home/Mobile?FinalSymbol=A%2FHRC%2F37%2F57%2FAdd.3&Language=E&DeviceType=Desktop&LangRequested=False
United Nations General Assembly (UNGA). (2019). Report of the Independent Expert on the enjoyment of human rights by persons with albinism on the round table on human rights and albinism: Seeking consensus and priorities on advocacy and research (A/HRC/40/62/Add.2). https://documents-dds-ny.un.org/doc/UNDOC/GEN/G19/014/26/PDF/G1901426.pdf?OpenElement
United Nations General Assembly (UNGA). (2021). Elimination of Harmful Practices related to Accusations of Witchcraft and Ritual Attacks (A/HRC/RES/47/8). https://undocs.org/Home/Mobile?FinalSymbol=A%2FHRC%2FRES%2F47%2F8&Language=E&DeviceType=Desktop&LangRequested=False
Mothering & Albinism 