Mothering, Albinism and Human Rights: The Disproportionate Impact of Health-Related Stigma in Tanzania
- PDF / 713,124 Bytes
- 22 Pages / 439.37 x 666.142 pts Page_size
- 43 Downloads / 152 Views
Mothering, Albinism and Human Rights: The Disproportionate Impact of Health-Related Stigma in Tanzania Sheryl Reimer‑Kirkham1 · Barbara Astle1 · Ikponwosa Ero2,3 · Elvis Imafidon4 · Emma Strobell1 Received: 18 January 2020 / Revised: 22 August 2020 / Accepted: 2 September 2020 © The Author(s) 2020
Abstract In many parts of sub-Saharan Africa, mothers impacted by the genetic condition of albinism, whether as mothers of children with albinism or themselves with albinism, are disproportionately impacted by a constellation of health-related stigma, social determinants of health (SDH), and human rights violations. In a critical ethnographic study in Tanzania, we engaged with the voices of mothers impacted by albinism and key stakeholders to elucidate experiences of stigma. Their narratives revealed internalized subjective stigma, social stigma such as being ostracized by family and community, and structural stigma on account of lack of access to SDH. An analysis of health systems as SDH revealed 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. The findings pose implications for research, policy, and practice. 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. Keywords Albinism · Stigma · Human rights · African ontology · Ethnography · Gender · Social determinants of health · Gender equality · Equity · Mothers
* Sheryl Reimer‑Kirkham [email protected] 1
Trinity Western University, Langley, Canada
2
United Nations Independent Expert on the Enjoyment of Human Rights by Persons with Albinism, Geneva, Switzerland
3
Under the Same Sun, Surrey, Canada
4
University of London, London, England, UK
13
Vol.:(0123456789)
S. Reimer‑Kirkham et al.
1 Introduction Stigma is associated with a range of health conditions and social situations, often resulting in negative health and social effects. Such is the case with albinism, a relatively rare, non-contagious genetically inherited condition (Kromberg and Manga 2018; Kromberg et al. 2020) that causes a lack of melanin in the skin, hair and eyes. Albinism occurs worldwide, at a rate of about 1 in 17,000, but the incidence rises as high as 1 in 1000 in parts of Africa (Gronskov et al. 2007; Hong et al. 2006). Physiological effects of albinism such as visual impairment, once established, and skin vulnerability to disfiguring solar damage are bases of additional negative
Data Loading...
