University of Pretoria: UP’s Centre for Human Rights hosts chat to highlight role of UN Independent Expert on the Enjoyment of Rights by Persons with Albinism

The Centre for Human Rights at the University of Pretoria (CHR@UP) recently hosted a virtual live chat with the new United Nations Independent Expert on the Enjoyment of Rights by Persons with Albinism, Muluka Anne Miti-Drummond.

Former UN Independent Expert on the Enjoyment of Rights by Persons with Albinism Ikponwosa “IK” Ero gave the keynote address, while Ramatoulie Isatou Jallow, Human Rights and Democratisation in Africa student at the CHR@UP, moderated the event and also provided the opening remarks.

In her remarks, Jallow highlighted the instances of discrimination and violence against people with albinism.

“We know from a factual background in relation to the rights of persons with albinism that there has been loads of instances that are recorded in relation to murder, the mutilation of body parts for ritual attacks and other harmful practices that are aimed at persons with albinism that have been recorded in Eastern and Southern Africa. It is in light of this that this conversation is relevant. This will in essence be a chat, just to understand the mandate of the UN Independent Expert and how her role works to advance the rights of persons with albinism,” she said.

Director of the CHR@UP Professor Frans Viljoen said in his welcome remarks that the event was aimed at raising better awareness and understanding not only of the mandate of the Independent Expert, but also the issues that affect persons with albinism. He added that the event and its cause were very dear to the CHR.

“The CHR is on one hand an academic department in the Law Faculty at UP. On the other hand, the centre is also, if you like, a civil society organisation or an NGO. We raise our own funds and we devise projects to advance human rights in Africa. It is within the framework of this part of the centre that we have a number of units that focus on advocacy, research and capacity building around particular contemporary human rights themes. One of those themes is the rights of persons with disabilities. It is this unit that concerns itself with this work. We have been in this unit supporting IK (previous UN Independent Expert on the Enjoyment of Rights by Persons with Albinism) and we see it as this unit’s very important work to support the mandate of the expert. Not only because the previous and current experts are Africans located and working in Africa, but also because the violation of the rights of persons with albinism is such a prevailing concern for us,” Prof Viljoen said.

Previous mandate holder Ero began by giving the CHR and, in particular, the disability unit thanks for what she described as their unwavering support during her time as mandate holder.

“It was good collaboration that bore a lot of fruit, especially with the AU mechanisms, the Pan-African Parliament – we had a couple of resolutions come out of there. We are waiting for the Pan-African Parliament to adopt the guidelines on harmful practices, which is the first of its kind. So this was a really amazing collaboration and I am glad to hear that you are committed to taking it forward with my successor,” she said.

Ero shared the story of Heri, a Tanzanian man whose grave was desecrated the day before the live chat to illustrate some of the challenges still facing persons with albinism on the continent. Heri lived with albinism.

“Heri is a 40-year old man who died last year from skin cancer. Now I bring up the story of Heri because I think it is quintessentially an example of what is still going on unfortunately. Heri worked in a hospital as an intern in the lab. He had applied for a scholarship with a civil society organisation in Tanzania to study for a certificate in public health. He finished his qualification; his position was made permanent by the hospital and he settled down and started a family; he had two children. Now the irony with this – and this tends to be the theme with albinism, lots of paradoxes and ironies – shows the difficulties in solving human rights issues. So he contracted skin cancer along the way, it spread and he unfortunately died last year. He was buried, and his family woke up yesterday and his body was gone – including the coffin. Before Heri’s grave was desecrated there was the case of a child in Zambia who was attacked. There are now five of them in the last 13 months. All of this is not to keep hammering on bad news, but rather to say we honour the victims by remembering why we do what we do, none of us are here to serve ourselves,” she said.

Her successor, Miti-Drummond, who has been the mandate holder since August, said it has been interesting engaging with persons with albinism from across the globe.

“I see my role as amplifying the voices of persons with albinism. My role is not to replace those voices,” she said explaining that this is enabling her to work better with persons with albinism and communicate effectively with various associations and groups from across the globe.

“I have been very fortunate to be able to do that,” she said.

She said she was also grateful for sessions such as the live chat as they were also very important platforms for discussion and exchanging information.

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