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The Disability Rights Unit at the Centre for Human Rights, Faculty of Law, University of Pretoria, cordially invites you to a webinar on mothers impacted by albinism. The webinar, which is a dialogue on gender, albinism and human rights in South Africa is held in commemoration of Albinism Awareness Month.

Download invitation


Webinar

Thursday 10 September 2020
Webinar (Zoom)
09:00 GMT  /  10:00 WAT  /  11:00 SAST  /  12:00 EAT 

Click here to register


Theme: Mothers impacted by albinism: A dialogue on gender, albinism and human rights in South Africa

Panellists

  • Moderator: Innocentia Mgijma-Konopi
    Centre for Human Rights, University of Pretoria
    Setting the global context
    Reflecting on the UN Independent expert on albinism’s report on women and children with albinism

  • Dr Sheryl Reimer-Kirkham, RN PhD
    Dean and Professor School of Nursing, Member College of New Scholars, Royal Society of Canada
    Speaking on the research project: Mothering, albinism, and human rights in Africa: Mapping patterns of resilience at the juncture of gender, colourism, and religion

  • Professor Jennifer Kromberg 
    Associate Professor, Division of Human Genetics, Wits; National Health Laboratory Service 
    Psychological impact of having a child with albinism

  • Video presentation: Albinism in Generations photo book

Round Table Discussion

  • Lorraine Tshuma 
    Mother without albinism, child with albinism
  • Busisiwe Mahlaba 
    Mother without albinism, two children with albinism
  • Thembisile Madlala (Albinism Society KZN) 
    Mother with albinism, child without
  • Gugulethu Shandu 
    Mother with albinism and a child with albinism

The webinar is inspired by the Mothering & Albinism: Mapping patterns of resilience at the juncture of gender, colourism, religion, and human rights research project that Centre for Human Rights is part of.
For more information go to www.motheringandalbinism.com

Background

Mothers impacted by albinism in South Africa face extraordinary circumstances, both as mothers of children with albinism and mothers who themselves have albinism.  These mothers are particularly vulnerable to human rights violations as a result of social constructions of gender that result in multiple and intersecting forms of stigma, discrimination, violence, and inequity. 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. 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. Mothers impacted by albinism in South Africa face extraordinary circumstances, both as mothers of children with albinism and mothers who themselves have albinism.  These mothers are particularly vulnerable to human rights violations as a result of social constructions of gender that result in multiple and intersecting forms of stigma, discrimination, violence, and inequity. 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. 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. 

This dialogue on gender, albinism and human rights will explore the experiences of mothers impacted by albinism. Four women who are mothers with albinism and mothers of children with albinism will share their experience on how they have been impacted by albinism including their experiences of access to community services. The webinar will also explore 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 as well as discuss how the government can incorporate a gender dimension and an intersectional lens in supporting mothers of children with albinism.

albinism in generations

Albinism in Generations photo book

The Centre for Human Rights takes pleasure in officially launching the online version of the photo book, Albinism in Generations.

Albinism is a condition that is genetically inherited which results in the lack of melanin in a person’s hair, skin and eyes. Albinism is non-contagious and transcends gender and race.

Unfortunately, in some countries in Africa, the highly misunderstood nature of this condition has resulted in diverse forms of violations against persons with albinism including discrimination, ritual killings, infanticide, lack of access to quality healthcare and education, amongst several others.

Addressing these misconceptions is what inspired the Albinism in Generations campaign, which aims to visually tell the stories of persons with albinism in a bid to dispel the myths and foster inclusion in society. Through these photographs, you will discover the personal stories of five individuals and their journeys towards overcoming the challenges, neglect and discrimination encountered as a result of their albinism.

This photo book is now available online in order to facilitate conversations around how, as a society, we can better respect and protect the rights of persons with albinism.

Special thanks to the Open Society Initiative for Southern Africa and the I Am Movement for partnering with us on this campaign and the photographer Adebayo Okeowo.

Download Albinism in Generations

Click here to register


For more information, please contact:

Innocentia Mgijima-Konopi
Manager: Disability Rights and Law Schools Programme

Tel: +27 (0) 12 420 6398
Fax: +27 (0) 86 580 5743
innocentia.mgijima@up.ac.za

Tariro Rufetu
Programme Officer: Disability Rights Unit

Tel: +27 (0)12 420 6398
Fax: +27 (0) 86 580 5743
tariro.rufetu@up.ac.za