For Elma and the many other mothers impacted by albinism

Innocentia’s sister, Elma.

The last born in a family of nine, I spent most of my childhood in Chitungwiza, one of Zimbabwe’s most densely populated townships which started out as a dormitory town in the 70s. The most enduring memory I have of my childhood is that there were always people coming to our house. Very few things happened in our community without my mother knowing. The chairperson for ruwadzano, the women’s group at the local Methodist Church (pictured in the feature photo above, my mother is wearing green on the left standing alongside the women’s group), my mother was also a member of the local women’s club, burial society, stokvel and even soccer team. It is therefore not surprising that many women in our community came to my mother. They came for advice, for prayer, for help, for consolation and on many an occasion some juicy gossip. I wasn’t allowed to sit in on the conversations, of course, but by lingering whilst serving tea and scones or strategically sweeping near where they were seated, I got to overhear the conversations. I heard the story of the women whose husband had brought other woman home and changed the locks of the house whilst she was away; the woman who had just come from visiting yet another faith healer because her son was having a psychotic break and she was at a loss as what to do; the woman whose in-laws mistreated her because she was struggling to conceive; the woman whose husband was a police officer and beat her up daily but she had nowhere to go. I also heard my mother tell our story. That people were whispering because my older sister Elma had given birth to a child with albinism, people were saying she had numerous abortions and this was her punishment, or akabata bata, meaning she had delved into dark magic which backfired.

Innocentia’s mother in her hometown of Chitungwiza, Zimbabwe.

It was these stories more than anything that drew me into a career in human rights. They provided me with profound insights into the lived realities of the people in my community. I understood quite early on that the world is a difficult place to be in for a lot of people. I equally understood that we are and always have been responsible for each other.

I was awarded the Atlantic Fellowship for Health Equity in South Africa (Tekano) earlier this year. The fellowship has provided me with a unique opportunity to not only highlight the experiences of mothers of children with albinism in accessing health care services but also to pilot a social change initiative that tackles some of the challenges. This amplifies some of the regional work I had begun to be involved in on the mothering and albinism project. Most mothers who give birth to children with albinism in Africa like Elma continue to leave the hospitals after the birth of their child without any information about the condition and how to care for their child and struggle to access dermatology and ophthalmology services for their child. In most cases mothers are blamed for having a child with albinism. The modules taught as part of the fellowship have deepened my understanding of South Africa’s health equity landscape, the politics of health and healthcare system, and the structural and socioeconomic determinants of health. The true value of the fellowship for me has been in helping me develop a more critical understanding of inequality and the tools to tackle it allowing me to contribute towards changing the narratives I grew up hearing in my mother’s kitchen.

Written by Innocentia Mgijima-Konopi, Atlantic Fellow for Health Equity South Africa at Tekano 2021, LLB (Witwatersrand), LLM in International & Comparative Disability Law and Policy (Galway) innocentia.mgijima@atlanticfellows.org

[All photos used with permission by author.]

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