Cape Town - Acknowledging the full humanity of people living with albinism will be the focus this Human Rights Day.
Isango Elihle (The Beautiful Gate), with the South African Human Rights Commission (SAHRC), have invited the public to attend a Human Rights Day event at Lookout Hill, Ilitha Park, Khayelitsha.
Albinism is a congenital disorder characterised in humans by the complete or partial absence of pigmentation in the skin, hair and eyes. It’s also associated with vision defects.
Established in 2020, Isango Elihle works to support people living with albinism.
Founder Sannie Manda said in addition to advocating against discrimination, persecution and stigmatisation of people living with albinism, the organisation aims to make sunscreen lotions and other protective wear more accessible due to the high susceptibility to skin cancer.
“A daily struggle is free access to sunscreen lotions, which are expensive. Most of these people are unemployed and cannot afford to buy. This also results in having difficulties affording even a basic food basket.
“They have eyesight issues too; most are visually impaired, which makes them partially blind. Besides the basics, they are having difficulties acquiring care grants as an ongoing benefit. When a grant is approved it expires after six months, yet their condition is permanent. Access to housing, too, has not been easy,” Manda said.
SAHRC advocacy and research officer Lesego Raphalane said Isango Elihle had approached the SAHRC, as they felt that an engagement of this nature would help in highlighting the issues faced by people with albinism.
“Isango Elihle, being an organisation that advocates for the rights of persons with albinism, were of the view that such a partnership was needed. It is envisaged that the event will indeed bring attention to this community in society, and also help us to educate the public about albinism and demystify the myths surrounding this condition,” said Raphalane.
The SAHRC will also register any complaints on the day for investigation, with the aim of getting the necessary redress.
“If the issues are systemic in nature, then we will ensure that we bring them to the attention of the relevant authority for them to address, and then the SAHRC will monitor the commitments from the relevant authorities.
“The aim is to ensure that we promote and protect the rights of people living with albinism, and children in particular, as one of the vulnerable groups,” Raphalane said.
Researcher Zandile Ngubane, whose Master’s research focused on “African Traditional Beliefs on Albinism”, found that people with albinism still live in fear, especially in African traditional communities.
“Being perceived as ‘other’ is a huge challenge, especially in the African traditional communities. How they are not perceived to be human is a daily struggle. People live in fear of being kidnapped, live in fear of being killed, not knowing if your child who lives with albinism is going to come back home. Those are the fears and challenges that maybe families and people with albinism face,” Ngubane said.