Breaking albinism’s stereotypes

4 November 2013

Terry Anna Adams was only four years old when a fellow learner at her school brought chemicals from home in an attempt to “make her brown just like everybody else”.

Adams, now 20, is an albinism activist, who is determined to achieve her goals in life and change the misconceptions about the condition.

“Growing up in a predominantly coloured community was quite a challenge because people didn’t understand who I am or what I do,” says Adams, who is now an English student at the University of Pretoria.

Adams was attending the first-ever National Conference on Albinism, which was held in Boksburg, east of Johannesburg, recently. Hosted by the Department of Women, Children and People with Disabilities in partnership with the Albinism Society of South Africa (ASSA), the conference was attended by 300 delegates, 90 of whom were children with albinism.

High on the agenda of the conference was the development of positive language associated with albinism in all official languages.

For Adams, being an albino is “positive in a way because some people challenge me. It’s like they’re looking at me to see if I can do and achieve certain things. On the other hand, it’s negative because some tend to blame my shortfalls on my disability.”

Adams, who has her sights set on being a broadcast journalist, refuses to be defined by her albinism, and detests being treated differently. She uses poetry to express her feelings: “I am my thick glasses and melanin … I am the fight within me. I am the whole world that is against me.”

What is albinism?

Albinism is an inherited genetic condition in which the body does not produce enough melanin, the chemical that is responsible for eye, skin and hair colour. Because of the lack of pigmentation, the affected person has very pale skin, hair and eyes.

In South Africa, around one in 4 000 people is estimated to be born with albinism, compared with about 1 in 20 000 worldwide, according to ASSA.

Apart from eye problems that can lead to blindness and a high vulnerability to skin cancer, people with albinism also face discrimination and stigma.

In response to the widespread disappearances and killing of people with albinism in Tanzania, Burundi and other East and Central African countries, the United Nations officially declared albinos “persons with disabilities” in 2008.

In East Africa, people with albinism are believed by some to have mystical power, putting them at risk of abduction and mutilation. Body parts are used in witchcraft, or buried under businesses, supposedly to bring wealth.

An advocacy group called Under the Same Sun estimates that 72 people with albinism were killed in Tanzania between 2006 and this year, while around 31 survived machete attacks.

One of the myths that exist in South Africa is that people with albinism do not die, that they simply disappear. Derogatory words are also sometimes used to refer to people with albinism.

Tackling discrimination

Nomasonto Mazibuko is the president of ASSA, which she founded to “enhance the self-esteem of people with albinism”. The society aims to educate and inform communities and to create socially acceptable conditions for people with albinism. It also helps parents to care for children with albinism.

Mazibuko says there is still prejudice at most levels in South Africa. The Department of Health, she says, does not have enough health care providers specialising in albinism, which means people with the condition do not always get the correct medical care.

For young people with albinism, finding a job is difficult. For those in a career, the chances of being promoted are slim because you are seen as inadequate, Mazibuko says.

The conference was the first chance for the society to collaborate with government: “I have hope now that nearly 20 years after freedom, we are being integrated and feel like part of the rainbow nation.”

She proposed that the departments of Justice, Health, Education and Labour engage the albinism society to put policies in place.

Challenges

Lulu Xingwana, the Minister for Women, Children and People with Disabilities, says people with albinism still face prejudice and isolation, including within government departments.

“Matters that must be addressed include the 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.”

Xingwana said the cost of sun screen and low-vision assistive devices was escalating on a daily basis, which limited people with albinism’s access to information and the environment.

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

Disability rights month

November is disability rights month and Xingwana says it is a time for South Africans to reflect on the myths and harmful cultural practices that are discriminatory and undermine the dignity of people with albinism and the disabled in general.

The minister said her department would ensure that programmes that address people with albinism are in place within the next financial year.

SAinfo reporter and SAnews.gov.za