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Birth Stories of Families Impacted by Albinism

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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

Funding: Canadian Institutes of Health Research Project Grant (#481405) 2022 – 2026.

Grant Applicants: Sheryl Reimer-Kirkham (Trinity Western University); Barbara Astle (Trinity Western University); Ikponwosa Ero (African Albinism Network); Ramadimetja Shirley Mogale (University of Pretoria)

Co-Applicants: Lori Beaman (University of Ottawa); Meghann Buyco (Trinity Western University); Maretha de Waal (University of Pretoria); Bonny Ibhawoh (McMaster University); Elvis Imafidon (University of London); Jennifer Kromberg (University of Witwatersrand); Ronell Leech (University of Pretoria); Muluka-Anne Miti-Drummond (UN Office of High Commission for Human Rights); Dianah Msipa (University of Pretoria); Eunice Pallangyo (Aga Khan University Tanzania); Kendra Rieger (Trinity Western University): Perpetua Senkoro (Tanzania Human Rights Defenders Coalition); Sonya Sharma (University College London); Emma Strobell (Trinity Western University); Wisdom Tettey (University of Toronto)

Grant Collaborators: Mary Ani-Amponsah (University of Ghana); Lydia Aziato (University of Ghana); Duncan Dixon (Trinity Western University); Mike Lang (Mike Lang Stories); Nomasonto Mazibuko (Albinism Society of South Africa); Innocentia Mgijima-Konopi (University of Witwatersrand); Lillian Ohene (University of Ghana); Landa Terblanche (Trinity Western University); Mpho Tjope (Albinism Advocacy for Access); Boateng Wiafe (Operation Eyesight Ghana).

This global health project focuses on perinatal experiences of mothers and their families who have given birth to a baby with albinism. Our broad goal is to protect human rights of persons with albinism, including welfare and security, social determinants of health, and gender equity. Women and children are disproportionately impacted, often facing intersecting forms of discrimination. In such contexts, giving birth to a baby with albinism can precipitate abandonment by family and community, intimate partner violence, and precarity. Responses of birth attendants at birth of an infant with albinism are critical, as they can (i) support the mother in accessing appropriate resources and quickly coming to acceptance or (ii) exacerbate trauma by re-inscribing discriminatory attitudes due to misinformation about albinism. This cooperative inquiry will employ participative, decolonizing, and creative methods to address gaps relating to health-related education and information during the perinatal period of mothers impacted by albinism.

The purpose of this study is to explore how the perinatal experiences of mothers who give birth to a baby with albinism can be improved through health services, health professions education, and the development of equity-oriented and contextually-relevant educational strategies, with the overarching aim of promoting, protecting, and fulfilling their human rights. Our primary research site is in South Africa, with secondary sites in Tanzania, Ghana, and Canada. Phase I (engage) involves the team collaborating in a participatory systematic review and a workshop to plan subsequent phases. Phase II (listen) data gathering engages stakeholders about birth stories of mothers of babies with albinism. Phase III (create) involves action cycles for meaning making through the creation of educational strategies and curricular and policy resources. Phase IV (mobilize) involves finalizing educational resources, hosting a 2-day international symposium, and end-of-grant Knowledge Translation. This project is funded for 4 years (2022-2026).

Mothering, albinism, and human rights in Africa

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Mothering, albinism, and human rights in Africa: Mapping patterns of resilience at the juncture of gender, colourism, and religion

Funding:  Social Sciences and Humanities Research Council (#435-2019-1120) 2019-2023; Under the Same Sun (Canada & Tanzania)

Grant Applicants: Reimer-Kirkham, S. (Trinity Western University), Astle, B. (Trinity Western University), Ibhawoh, B. (McMaster University), Tettey, W. (University of Toronto, Scarborough), Beaman, L. (University of Ottawa)

Grant Collaborators: Ero, I. (UN Independent Expert on the enjoyment of human rights by persons with albinism); Sharma, S. (Kingston University, UK); Imafidon, E. (Ambrose Alli University, Nigeria); Mazibuko, N. (Albinism Society of South Africa); Senkoro, P. (Under the Sam Sun, Tanzania); Mgijima-Konopi, I. (University of Pretoria, South Africa); Kromberg, J. (University of Witwatersrand, South Africa); Wiafe, B. (Operation Eyesight, Ghana); Panchuk, K. (Trinity Western University)

Mothers impacted by albinism in Africa face extraordinary circumstances, both as mothers of children with albinism and mothers who themselves have albinism. Albinism is a non-contagious, recessive, genetic condition that causes a decrease or absence of melanin in the skin, hair, and eyes. Not only do persons with albinism face skin cancer and low vision because of this genetic condition; they deal with discrimination and stigma on account of their physical  difference. In certain regions, deeply rooted spiritual and cultural beliefs about evil and misfortune persist, such that persons with albinism are ostracized and excluded. Even more ominous are the witchcraft-related harmful practices of violence and killing of persons with albinism for their body parts to be used in the preparation of “magic” medicines. 

Women and girls impacted by albinism are particularly vulnerable to human rights violations as a result of social constructions of gender that enable multiple and intersecting forms of stigma, discrimination, violence, and inequity. The purpose of this 4-year ethnographic study is to explore through a human rights lens the resilience of mothers affected by albinism, at the intersection of gender, colourism and religion, in Tanzania, South Africa, and Ghana. Specific attention will be directed towards the protection of the human rights of mothers impacted by albinism. The project involves ethnographic research in Tanzania, South Africa, and Ghana with mothers impacted by albinism, and key stakeholders including policy-makers, educators, healthcare providers, social workers, and faith leaders.  In each country, we are partnering with local albinism organizations. The project is funded for 4 years (2019 – 2023).

Mothering & Albinism in Tanzania

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Mothering & Albinism in Tanzania

Funding: TWU Internal Grant 2018; Under the Same Sun (Canada & Tanzania)

Applicants: Reimer-Kirkham, S., Astle, B., Sharma, S., Ero, I.

As a pilot project to “Mothering, albinism, and human rights in Africa: Mapping patterns of resilience at the juncture of gender, colourism, and religion”, this ethnographic project examined the intersection of gender, albinism, and human rights, specifically looking at mothering and albinism in Tanzania. Women are at the front lines of human rights violations—both as the mothers of children with albinism, and as mothers who themselves have albinism. In our current knowledge synthesis projects, we have found no research that holds mothering and albinism as primary research focus, though research shows women are disproportionately affected by cultural and spiritual beliefs about albinism.

We learnt of several grassroots initiatives by civil society organizations—Under the Same Sun (UTSS) and Standing Voice (SV)—in Dar es Salaam and Mwanza providing support to mothers who are impacted by albinism. These groups represented an opportunity to learn from, in collaboration with our UTSS partner and Ikponwosa Ero’s UN office on the enjoyment of human rights by persons with albinism. The purpose of this ethnographic study was to explore the intersection of gender and disability in the experience of mothers of children with albinism, and mothers who themselves have albinism. The goals were to: (1) explore social constructions around gender and disableism in the context of albinism in Tanzania, and their impact on the experience of mothering (whether on mothering children with albinism, or on mothering as a woman with albinism); (2) describe how these mothers and their children access health and social services, education, and employment, including the obstacles they encounter; (3) examine the strategies  employed, and resources drawn on to overcome such obstacles; and (4) articulate recommendations for the protection and promotion of the human rights of these women and their children.

Fieldwork in Tanzania was conducted in March and April of 2019.

The welfare and security of persons with albinism

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The welfare and security of persons with albinism: Developing a Research-Policy Network to address the interplay of spiritual/cultural practices and human rights 

Funding: SSHRC Insight Development Grant #430-2017-00911; Under the Same Sun (Canada)

Applicants: Reimer-Kirkham, S. (Trinity Western University), Astle, B. (Trinity Western University), Ero., I. (UN Independent Expert), Beaman, L. (University of Ottawa), Ibhawoh, B. (McMaster University), Tettey, W. (University of Toronto, Scarborough)

Collaborators: Dixon, D., (TWU) & Sawatzky, R. (TWU)

Worldwide, persons with the genetic condition of albinism, in particular those with oculocutaneous albinism, lack melanin or pigmentation in their skin, hair, and eyes, and hence are vulnerable to vision impairment and skin cancer. Along with these health concerns, persons with albinism face stigma and discrimination, resulting in social isolation and lack of access to health and social services (even as basic as disease prevention with sunscreen and screening for skin cancer) (Brilliant, 2015). For example, in parts of Africa spiritual/cultural practices entrenched in witchcraft are expressed as fears about curses, and social ostracism (Adeyanju, Dipo, & Taiye, 2015; Butler-Jones, 2013). In more extreme cases recently gaining media attention, persons with albinism face human rights atrocities including mutilation and murder as their body parts are reportedly used for witchcraft purposes and economic gain through trafficking (Burke, Kaijage, & John-Langba, 2014); Cruz-Inigo, Ladizinski, & Sethi, 2011).

Human rights organizations, like the UN, and civil society organizations have begun to draw attention to the situation of human rights violations experienced by persons with albinism. In conjunction with such activism, academic research is needed to fully understand the scope of the problem, the underlying mechanisms, and possible social responses to address the welfare and security needs of persons with albinism. Importantly, because of the interplay of traditional spiritual and cultural practices, a careful and complex reading of religion (including witchcraft) intersecting with colonial histories is necessary. This research-policy collaborative focused on this gap in knowledge. The purpose of the project was to foster evidence-informed policy and human rights advocacy through the development of an international, interdisciplinary research-policy collaborative and a prioritized research agenda on albinism, spiritual/cultural practices, and human rights. The objectives of the project were to:  

  1. Summarize the current state of knowledge (academic literature, grey literature, expert opinion) on albinism, spiritual/cultural practices, and human rights in order to ascertain what perspectives, policies, and practices best protect the human rights and ensure the security and welfare of people with albinism.
  2. Establish a global network of interprofessional, interdisciplinary researchers, policy-makers and civil society stakeholders committed to research and advocacy in the area of albinism, spiritual/cultural practices, and human rights.
  3. Develop a research agenda in the area of albinism, spiritual/cultural practices, and human rights.
  4. Enact integrated knowledge mobilization for immediate advocacy, education, and policy influence.

These objectives were accomplished with a mixed-methods study with three phases: (i) meta-narrative review of peer-reviewed academic and grey literatures at the nexus of albinism, spiritual and cultural practices, and human rights; (ii) an online survey of current researchers and key stakeholders to gather information on current research underway and extant knowledge-practice gaps, and to prioritize areas and approaches to research (Modified Delphi Survey); and (iii) a gathering of leading researchers, policy-makers, civil society stakeholders for a Roundtable Summit coinciding with the United Nations Human Rights Council in June 2018.

A scoping review on the health implications of spiritual and cultural practices for people with albinism

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A scoping review on the health implications of spiritual and cultural practices for people with albinism:  A global health perspective

Funding: Under the Same Sun (Canada)  

Applicants:  Reimer-Kirkham, S. (TWU) & Astle, B. 

Collaborators: Ero, I. (UN Independent Expert), Panchuk, K. (TWU), Dixon, D. (TWU)

The purpose of this scoping review was to establish the current state of knowledge on albinism, spiritual and cultural practices, and implications for health and health services. The questions giving specific direction to the review were:

  1. What is the nature (i.e., extent or amount, focus, gaps, disciplinary perspective) of academic literature at the intersection of albinism, spiritual and cultural practices, and health implications?
  2. Which researchers are currently engaged in research related to albinism, spiritual and cultural practices, and health, and what is the nature of their research? 
  3. How do spiritual and cultural practices, including witchcraft, influence health and health services for people with albinism?