People with albinism call for recognition

(Image: Swiatek Wojtkowiak, via Wikimedia Commons)

Persons with albinism continue to experience high levels of abuse and violence of their rights due to entrenched harmful attitudes and beliefs associated with albinism.

Some people refer to them as a curse and some associate them with luck; either way, they are often ostracised because of these labels.

This inherited condition is explained as a lack of pigmentation, which affects the eyes, hair, and skin.

From being called in derogatory language and attitudinal barriers, people with albinism say there are still many issues to be addressed.

They have pleaded with government to help dispel the myths and help them to access equal opportunities in education and work.

This emerged during the first ever two-day Conference on Albinism, which was hosted by the Department of Women, Children and People with Disabilities (DWCPD), in partnership with the Albinism Society of South Africa (ASSA), on Saturday.

One of the delegates from the Albinism Society of South Africa, Mohau Nhlapo, told SAnews: "Many people with albinism, especially children are still very much marginalised in our communities especially at schools. I can attribute this to the ignorance of learners and teachers."

He said many people with albinism in communities were still called "Inkawu", which means monkey or "Leswafi", which means monster.

Nhlapo said there were "not enough doctors specialising with albinism condition, which means we don't get adequate medical care when we need it."

"Unfortunately some still see us as not human enough and have equated us to animals."

As a young South African trying to make it, Nomasazi Nkosi, another delegate at the conference, said some were still discriminated even at the workplace.

"Finding a job for a youth with albinism is still difficult and if you get a job, chances of you being promoted are slim because you are seen as inadequate," explained Nkosi.

The President of the Albinism Society of South Africa, Nomasonto Mazibuko, also shared Nkosi's views. Mazibuko said despite many people with albinism having qualifications, they were still being side lined.

Government also admits the stigma is problematic

Minister for Women, Children and People with Disabilities, Lulu Xingwana, said the major challenge which must be addressed was the backlog of none recognition, discrimination, stigmatisation, prejudice and isolation of persons with albinism, including within government departments.

"Matters that must be addressed include among others reduction in medical and health costs and expenses for people with albinism because of their needs and living conditions, as most are also dependent on social grants. For example, the cost of purchasing sun screen and low vision assistive devices is escalating on a daily basis, therefore limiting their access to information and the environment."

Xingwana called on partnerships with professionals in the medical profession to assist in health promotion and medical care of people with albinism.

The minister said there was also a need for South Africans to do an introspection on myths and harmful cultural practices that were discriminatory and undermining the dignity of people with albinism.

This, she said, compels partnership with linguists and language practitioners through Arts and Culture to remove the aspects in language that were derogatory and create relevant words that were not offensive and that will restore the dignity of people with albinism.

"We also have to ensure that Albinism is included fully integrated and recognised within the legislative framework and scope of policy within the country. Legal practitioners will have to also assist in changing and addressing the legislative environment that seek to assist People with Albinism to access justice," outlined Xingwana.

Leading the front, the minister said her department will also ensure that programmes addressed specifically towards people with albinism will be put into place within the next financial year.

"It is our duty as a society to treat people with albinism with the respect they deserve. We also have to ensure that their dignity, independence, self-worth, and self-reliance is protected and promoted within a rights based approach."

The conference is attended by 300 delegates, 90 of which were children with albinism. The delegates will look at the development of positive language associated with albinism in all official languages. They will also take forward the recommendations contained in the Report published by the Office of the High Commissioner on Human Rights on the Promotion of the Rights of Persons with Albinism.

Organisations, who participated at the conference, included the Human Rights Commission, the Pan African Federation for People with Albinism, Disabled People South Africa and Inherited Disorders Association. They all called on government to influence and make policy changes through governance system to improve the quality of life of people with albinism.