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People living with albinism must be treated with respect

Written by Jauhara Khan

Gladys Nkosi wants South Africans to treat people living with disability with respect and humanity.

Nkosi, 39, who was born with albinism, the genetic condition characterised by the lack of pigmentation in the skin shared her feelings on International Albinism Day, which is observed on 13 June every year.

She hails from Nelspruit in Mpumalanga and has struggled with perceptions about her condition.

Nkosi works for a security company, and her co-workers laugh at her because she has albinism and works the night shift.

“They tell me how can I do the night shift, how will I see, because everyone knows people like me can’t see well,” she said.

 “I have been discriminated against by my community, the people I work with. People say bad things about me daily. I left school in grade 11 because my teachers used to call me names. Most people like me cannot work or go to school because of discrimination,” she said.

Albinism is also commonly characterised by pale skin, light eyes and hair along with sensitivity to sunlight and visual impairment.

People living with albinism are also at greater risk of developing cancer due to the lack of protective pigmentation.

Nkosi developed cancer in her left leg in 2015 which was successfully treated, but it has since returned in her right leg.

“We need more to be done, especially when it comes to tests and check-ups. We need more testing for cancer, and we need to be checked more regularly.”

Nkosi said that she manages her skin sensitivity using vanity packs from her local clinic provided by the Mpumalanga Department of Social Development. These packs contain aqueous creams and sunblock, as people with albinism struggle with extreme sensitivity to sunlight.

“People who don’t have this condition need to know that we are human just like them. We live just like them. We need to work and go to school just like them. Everything that happens to them happens to us. We are not “thieves”. I want people to know this and treat us better,” she said.

In 2013, The United Nations Human Rights Council adopted a resolution calling for the prevention of attacks and discrimination against persons with albinism. On 18 December 2014, the UN General Assembly adopted a resolution proclaiming 13 June as International Albinism Awareness Day. The day was first celebrated in 2015.

There are countless myths and beliefs surrounding albinism, such as people with albinism do not die, but disappear into the mountains, and that their body parts can be used as “muthi” to cure illnesses.

Du Toit Nkambule of the Office on the Status of Disabled Persons in the Mpumalanga Department of Social Development said these beliefs had to be changed, and that the department had several awareness campaigns in place to educate the public on albinism.

“Apart from the vanity packs and protective hats provided by the Department, we have also advocated for the protection of those with albinism in schools, communities and in other government departments. We go to schools because we believe that education about this issue must begin as early as possible.”

“We go into communities and run support groups for parents of children with albinism to talk about their issues and get help. The department also ensures that people with albinism are given employment opportunities in municipal offices,” he said.