Skin deep – breaking stereotypes around albinism

Friday, November 1, 2013

By Bathandwa Mbola

Terry Anna Adams was only four years old when a fellow learner at her preparatory school brought chemicals from home in a misguided 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 that led to the incident which left her traumatised at a tender age.

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

SAnews caught up with Adams at the first ever National Conference on Albinism, which was held in Boksburg. Hosted by the Department of Women, Children and People with Disabilities (DWCPD), in partnership with the Albinism Society of South Africa (ASSA), the conference was attended by 300 delegates, 90 of which were children with albinism.

It was a good platform to get under the skin of an issue that often falls off the radar of the anti-discrimination talk. High on the agenda of the conference was the development of positive language associated with albinism in all official languages. Adams, who uses poetry to express her feelings about her battle with discrimination, was more than ready talk.

“It’s 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,” says Adams, whose striking natural beauty is complemented by her blonde hair, pale skin and blue eyes.

The feisty young woman has her sights set on being a broadcast journalist. She refuses to be defined by her albinism, and detests being treated differently. She breaks into free verse, revealing a little of the poetry that has won her numerous awards.

“... I am my thick glasses and melanin … I am the fight within me. I am the whole world that is against me.”

These few words might only be a small window into Adams’s soul, but there is no mistaking her message and purpose. For her, life is not about what she has or doesn’t have, nor is it about her ability or disability.

“I feel like we, as people with disability, need to be taken seriously and the only way we can be taken seriously is if we excel in what we do best.”

Genes and discrimination

Albinism is an inherited genetic disorder 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 are estimated to be born with albinism, compared with about 1 in 20 000 worldwide, according to the Albinism Society of South Africa (ASSA) 

Apart from vision problems and the risk of skin cancer associated with being exposed to the sun, people with albinism have a barrage of ignorance-fuelled myths and superstitions to contend with.

Some people refer to those with albinism as a curse, while some associate them with luck. Either way, they are often ostracised because of these labels and suffer discrimination at work and school as they appear to be different from others.

People with albinism live under risky conditions in some parts of the world. In Tanzania, for example, they are hunted like game and killed. Their body parts, or ‘Zeruzeru’ as they are called in Tanzania, are used by witchdoctors in ritual potions meant to bring power and wealth.

One of the myths that exist in this country is that people with albinism do not die like other human beings, that they simply disappear. Derogatory words such as “Inkawu” (‘monkey’) or “Leswafi” are used to referrer to their condition.  

One person who has had to shake off the insults is Nonstikeleo Loteni, 36, from Grahamstown, who is at peace with her albinism.

Loteni says most of the challenges she experienced were as a child in school.

“I have been in those situations where other kids see you as different from them, teasing me and calling me names. When I was young, I used to react. I would cry and run to my mother or I would respond back defensively.”

She admits that when growing up, the teasing nearly broke her self-esteem.

However, she says she reached a point where she learnt to ignore what people were saying and focused on what she wanted out of life.

“For me, I was committed to going to school no matter what and as a result, some people respect me based on my intelligence,” says the Industrial Psychology graduate, who now works for Johannesburg Water.

Loteni does not talk much but her body language says a lot. She’s a hardworking professional, who is determined not to let the challenges of albinism hinder her.

She has a gracious elegance about her that defies any challenge she has had to face. Raised in a family of six siblings, where three have albinism, Loteni says the issue around albinism is more about people’s perceptions and choosing what to believe.

“You can raise as much awareness [as you like] but people will always choose what they want to believe. There is nothing more to do besides educate them.”

She believes that efforts should be channeled towards educating and empowering people to help them come to grips with acceptance and understanding albinism. People should ultimately be able to say, “there is nothing wrong with that person. It’s just that he or she is different from me and there is nothing wrong with that”.

Tackling discrimination from the top

Loteni’s words are echoed by the president and founder of ASSA, Nomasonto Mazibuko, whose organisation enhances the self-esteem of people with albinism.

It also enables and supports parents to care properly for children with albinism and create socially acceptable conditions for people with albinism.  

This is achieved by running a number of projects and programmes as well as workshops and seminars, while collecting and disseminating information on albinism to the community.

Mazibuko, who is passionate about her work, says there is still prejudice at most levels in the country – something she hopes will change. 

Mazikubo says the Department of Health does not have enough health care providers specialising in albinism, which means they do not get adequate medical care when they need it.

Finding a job for a young person with albinism is still difficult, she says, adding that if you do get the job, the chances of being promoted are slim because you are seen as inadequate.

The conference is the first chance at collaboration 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.

Government admits that stigma is problematic. The Minister for Women, Children and People with Disabilities, Lulu Xingwana, says the major challenge that must be addressed is the backlog of non-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 field to assist in health promotion and medical care for people with albinism.  

As SA marks Disability Rights Month, the minister says there is need for South Africans to do introspection on myths and harmful cultural practices that are discriminatory and undermine the dignity of people with albinism and disability in general.

“It is time to reflect on attitudes and how these attitudes are barriers to the equalisation of opportunities for persons with disabilities.”

The minister said her department will also ensure that programmes that address people with albinism specifically will be put into place within the next financial year. – SAnews.gov.za

 

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