Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project.

BACKGROUND: Persons with albinism face challenges to their wellbeing, safety, and security, ranging from vision impairment and skin cancer to stigma and discrimination. In some regions, they also face human rights atrocities including mutilation and murder. Research on human rights and albinism is a relatively new field that has gained momentum since the United Nations appointment of an Independent Expert on the enjoyment of human rights by persons with albinism. In this paper, we present the results of a mixed methods study undertaken to identify priorities for research, advocacy, and policy on albinism and human rights. METHODS: The first component was a synthesis of peer-reviewed and grey literatures at the nexus of albinism, spiritual/cultural beliefs and practices, and human rights. We then conducted a priority-setting survey, informed by Delphi methods, on extant knowledge-practice gaps and research, advocacy, and policy priorities. Inclusion criteria included demonstrated expertise in the field (e.g., peer-reviewed publications, funded research), membership on national or international associations, or advocacy (civil society organizations) of more than 2 years in albinism and human rights. Thereafter, we gathered leading researchers, policy-makers, and civil society stakeholders for a Roundtable to gain consensus on these priorities. RESULTS: Access to skin and vision care, and education were not deemed high priority for research, likely because the evidence supporting the need for these is well established. However, they were priorities for advocacy and policy: what is needed is mobilization of this evidence through advocacy and implementation of such services (policy). Other social determinants of health (rurality, poverty, and gender equality) are present as subtext in the findings, more so than priorities for research, advocacy, or policy, despite their preponderance in the lives of persons with albinism. Research was prioritized on stigma and discrimination; advocacy; and witchcraft, but with some differentiation between Global North and Global South priorities. Priorities for research, advocacy, and policy vary in keeping with the explanatory frameworks at play, including how harmful practices and witchcraft are viewed. CONCLUSIONS: The lived experience of albinism is profoundly shaped by the social determinants of health (SDOH). Threats to the security and well-being of persons with albinism should be viewed through a human rights lens that encompasses the explanatory frameworks at play.

Beyond continental and African philosophies of personhood, healthcare and difference.

In this study, I explore the challenges that ideological hegemonies of personhood imbibed by nurses and other healthcare workers could pose for the nursing profession, particularly in terms of inhibiting the acknowledgment of difference. Dominant or hegemonic conceptions of personhood in particular spaces often consist of self-contained ideas and essentialist ontologies and normativity of what it means to be a person, lack of which results in the denial of personhood and the othering as non-person or sub-person. The other as the residue of such self-contained notions of personhood is most often denied the quality of care that the one who fits within such conceptions enjoy. For nurses and other healthcare workers to overcome such exclusionary tendencies in healthcare, they must overcome hegemonies and ideological dominance and be more open to alternative viewpoints and theories of personhood. I develop these lines of thought by focusing on the rich ideological traditions of Continental and African philosophies showing how exclusion takes place within these traditions based on conceptions of personhood and how such exclusion on the basis of difference impacts negatively on healthcare. I conclude by highlighting the need to go beyond hegemonic philosophies of personhood by decolonizing and demasculinizing healthcare, thereby allowing difference to flourish in an ecology of medical knowledge.

Dealing with the other between the ethical and the moral: albinism on the African continent.

Albinism is a global public health issue but it assumes a peculiar nature in the African continent due, in part, to the social stigma faced by persons with albinism (PWAs) in Africa. I argue that there are two essential reasons for this precarious situation. First, in the African consciousness, albinism is an alterity or otherness. The PWA in Africa is not merely a physical other but also an ontological other in the African community of beings, which provides a hermeneutic for the stigmatising separateness or difference of the PWA. The second reason hinges on a distinction drawn by Jürgen Habermas between the ethical point of view and the moral point of view. While the former consists of the ethos, customs, or idea of the good shared by a group of persons with a shared tradition or way of life, the latter consists of what is good for all and transcends particular traditions or ways of life. Consequently, the African ethical point of view, the ethics of solidarity, justifies within the African worldview the established alterity and, by implication, stigmatization of PWAs. On this view, actions that promote harmony and prevent discord and disequilibrium among accepted beings in the African community are permissible. I further show that unless there is a change in the physical and ontological conception of PWAs and a leap from the ethical point of view to the moral point of view, the negative attitudes toward PWAs will not change. The leap to the moral point of view does not suggest an abandonment of the ethical point of view but only recommends that the two meet halfway in respect for universally accepted norms of human actions. To achieve this, I will show that much needs to be done in the areas of policy formulation, law, health care services, and education.