On 13 June 2019 the Disability Rights Unit and the Advocacy Unit at the Centre for Human Rights, University of Pretoria, in partnership with the Open Society Initiative for Southern Africa (OSISA), celebrated International Albinism Awareness Day.
The event, which was hosted by OSISA at their Rosebank offices, included the photo exhibition ‘Shining our light to the world’ by Anna Yturralde and the launch of the photobook ‘Albinism in Generation’ by the Centre’s Advocacy Unit. The photobook seeks to correct the misconceptions about people with albinism and foster greater social inclusion by visual story-telling of personal journeys across different generations. The photographer Adebayo Okeowo says he hoped the book will find its way to public spaces as a way of encouraging conversations about how we can better protect the rights of persons with albinism.
Members of the donor community, civil society organisations interested in working to advance the rights of persons with albinism and those already working on the issues, were in attendance. Organisations represented included the International Bar Association, Ford Foundation and Amnesty International.
“It’s not how your story starts it’s how you end it” was one of the powerful sentiments from Regina Ndlovu, an activist and motivator. As a person living with albinism, she narrated her heart-breaking story of the struggles she faced at school because she could not see the black board and read from her text books and as a result left school illiterate. Mrs Lorraine Tshuma, mother to 9-year-old daughter Hannah who has albinism, spoke of her experience giving birth to a child with albinism and not getting the necessary information about the condition and support. The mother and daughter moment warmed the hearts of attendees and demonstrated that with true love and support, children with albinism can realise their dreams and exceed their expectations. The session was packed with eye-opening talks from activists and motivators such as Ingrid Bame, a social justice activist and founder of the I Am Movement and Lekwame Molebong, a lawyer and mother of one.
The second part of the event consisted of a panel discussion. Speakers included Vongai Chikwanda Centre for Human Rights, Innocentia Mgijma-Konopi (Centre for Human Rights) and Muzi Masuku (OSISA). They spoke of the human rights situation of persons with albinism in Southern Africa, the work their respective organisations are doing to advance the rights of persons with albinism and the challenges they are facing. Devastating to note from the sentiments raised by the panellists, was the urgent need to protect the right to life for people with albinism in countries such as Mozambique, Malawi and Tanzania. Panellists shared how people with albinism are living in constant fear of being killed for their body parts. The plight of people with albinism is worsened by the inability of local courts to adequately bring perpetrators to justice. Lack of planning on the part of governments across Africa has made social systems incapable of catering for the educational and health needs for people with albinism.
The panellists advocated for inclusive participation of people with albinism. They also highlighted the need to educate communities in order to change the misconceptions surrounding albinism from dire, dark and gloomy stories to those of celebrating the lives of people living with albinism.
On 4 March 2019, the Centre held a workshop at the Pan African Parliament (PAP) to deliberate on measures for the effective implementation of the Resolution on Persons with Albinism in Africa. It is encouraging that the PAP adopted the Resolution on Concrete Measures for the Promotion and Protection of the Rights of Persons with Albinism in Africa during their plenary session on 17 May 2019. More members of PAP across the continent are speaking out on the issues that persons with albinism are facing, and some of the comments are highlighted in this video.
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