In many parts of the world, mothers affected by albinism—whether as mothers of children with albinism or themselves with albinism—are disproportionately impacted by a constellation of health-related stigma, associated worldviews and human rights violations. Read our Open Access paper (available at link below) about our critical ethnographic study in Tanzania, where we engaged with the voices of mothers impacted by albinism and key stakeholders to elucidate experiences of stigma.
The narratives of mothers impacted by albinism revealed internalized subjective stigma, social stigma such as being ostracized by family and community, and structural stigma on account of lack of access to social determinants of health (SDH). Health systems are one of the social determinants of health for mothers impacted by albinism, through mechanisms such as: stigmatizing attitudes and behaviours of healthcare providers, especially at the time of birth; a lack of access to timely quality health services, in particular skin and eye care; and a lack of health-related education about the cause and care of albinism.
Gender inequality as another SDH featured prominently as an amplifier of stigma. Problematic constructions of masculinity and femininity in the family context were interlaced with stigmatizing beliefs and practices. Taking a closer look at underpinning worldviews and ontology or theory of being that sustain such stigma, mothers with albinism are perceived to lack some ontological qualities necessary to be a full human person. These constructions of gendered stigma carry real consequences. Gender-based violence and abandonment were experienced by many of the mothers in our study. Gender inequality meant that for many they were without resources, power, and control, while being burdened with full responsibility for the welfare of their children.
For many mothers in our study, mamas’ groups became a lifeline to social inclusion and subsistence. Through the lens of gender as a SDH, the success of these groups can be seen as sites of resistance and agency, where mothers impacted by albinism came to recognize the stigma placed on them and, through finding common experience and new knowledges, grew to resist this stigma.(Reimer-Kirkham et al., 2020)
A concrete avenue to de-stigmatization of mothers impacted by albinism exists by the application of principles of human rights, particularly equality and non-discrimination; contextual analysis of cultural dynamics including relevant ontology; meaningful participation of rights-claimants, such as peer groups of mothers; and accountability of governments and their obligation to ensure access to health information as a key social determinant of the right to health.
Read the full article here: https://link.springer.com/article/10.1007/s10699-020-09701-0#Sec20