Albinism Awareness Month in South Africa: An online webinar on mothers impacted by albinism

A panel of mothers impacted by albinism.  Participants from across the African continent.  Researchers presenting on our mothering and albinism project in South Africa (Dr. Sheryl Reimer-Kirkham), and on the psychosocial impact of albinism (Dr. Jennifer Kromberg). The UN Independent expert on albinism’s report on women and children with albinism (Ms. Ikponwosa Ero). Expert facilitation by Moderator and Manager Disability Rights Unit (Innocentia Mgijima-Konopi).  A book launch for the Albinism in Generations photo book [here]. These were the features of an engaging webinar on mothering and albinism, hosted on 10 September 2020 by the Disability Rights Unit at the Centre for Human Rights, Faculty of Law, University of Pretoria in commemoration of Albinism Awareness Month in South Africa.

Innocentia Mgijima-Konopi hosting and moderating the event from the Centre for Huma Rights, University of Pretoria, South Africa.

The webinar explored the social constructions of gender and colourism in relation to albinism in the context of South Africa and their impact on the experience of mothering. The UN Independent expert on the enjoyment of human rights by persons with albinism, Ms Ero, noted in a report to the Human Rights Council that many women who give birth to a child with albinism face ostracism and discrimination due to gross misunderstanding and mystification of albinism. Dr. Sheryl Reimer-Kirkham presented on research in Tanzania that showed that the rejection of mothers of children with albinism exposes them to poverty and isolation and increases the vulnerability to human rights violation of both mother and child with albinism. The study showed how mamas groups became sites of emotional and economic support as illustrated by the following participant quote.

“Before [this group] I had so much stress, pressure, and fear. But this connection we have and the things we do together keeps me moving.” – Sharing Circle Participant, TZ

The discussion included how healthcare providers, teachers, and the government can incorporate a gender dimension. Dr. Jennifer Kromberg in her presentation spoke about the psychological issues associated albinism, including the impact on infant interaction and maternal adjustment. Her research showed that chronic sorrow could continue for 15 months. They faced stigmatization and require family support, empowerment, counselling and education. With such interventions, she said, “adaptation happens.”

Gugulethu Shandu with her baby.

Four women who are mothers with albinism and mothers of children with albinism shared their experiences of access to health, education, and other community services.  Thank-you to these mothers for sharing their compelling stories of advocacy and resilience: Lorraine Tshuma (mother without albinism, child with albinism); Busisiwe Mahlaba (mother without albinism, two children with albinism); Thembisile Madlala (mother with albinism, child without); and Gugulethu Shandu (mother with albinism and child with albinism). 

Busisiwe Mahlaba with her two children.

Busisiwe told of her experience when she gave birth to a baby with albinism: “I saw that the baby was light in complexion, and the nurse took the baby away. When they brought the baby to me in the ward, the other mothers looked at me in a very strange way. I had no idea, I didn’t know what is happening. I was expecting some education, to tell me about the baby. But I received no teaching.  So I had to lift up my spirits.  This is my child, and I put her on my chest, and give her love.  I had to be brave. Then, when my child went to school, I learnt that I had to stand up for my child.  I had to campaign because the teacher did not know about albinism.”

Another mother, Thembisile, herself with albinism, acknowledged the pain in the stories, saying “they are opening some wounds”. She spoke about her own childhood, raised by her grandmother. “To have albinism is very challenging.  People shout at you with names while growing up.  You feel you are no longer a human being.”  Thembisile has become an advocate on behalf of other mothers impacted by albinism; in her words, “I pay attention to every story of mothers who give birth to a CWA.”   

But I received no teaching.  So I had to lift up my spirits.  This is my child, and I put her on my chest, and give her love.  I had to be brave. – Busisiwe, SA

Thembisile Madlala at International Albinism Awareness Day march.

The webinar was inspired by our project, Mothering & Albinism: Mapping patterns of resilience at the juncture of gender, colourism, religion, and human rights. We are fortunate to be partnering with the Centre for Human Rights, and Innocentia Mgijima-Konopi (project collaborator).  The project will begin virtual fieldwork in South Africa this Fall.

The recording of the webinar is available here.  https://www.youtube.com/watch?reload=9&v=2Le2LhW85q0&ab_channel=CentreforHumanRights

Blog written by Dr. Sheryl Reimer-Kirkham & Innocentia Mgijima-Konopi

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