Albinism – Rising Above the Odds [analysis]

TOVE Kangotue is the youngest of 12 siblings. Being the youngest, he grew up as the centre of attention and care.

In spite of being the favourite in the family, outside of the house, Tove quickly learned that he was different. Born with albinism and growing up in Katutura, it did not take long for the young boy to realise that he was also the target of both prejudice and wonder.

“I remember how some children would avoid me when I played outside. At school, there were times when I was not chosen for the team because some of the children did not want to be close to me,” he recalls.

Being different soon became a matter of everyday life. It was not until high school that Tove’s view of himself and life changed. During a biology class, he finally learned why his skin was not the same colour as the skin of his siblings, neighbours and friends.

“It was in that class that I realised it is not me who is different. It is only one chromosome in me that makes the difference. That changed my life,” he says.

Saturday, 13 June marked the first International Albinism Awareness Day. The globally celebrated awareness day was adopted in November 2014 by the United Nations’ General Assembly in order to bring an end to the discrimination people with albinism face worldwide.

According to Peter Stoermer, the founder of the non-governmental organisation Support in Namibia of Albinism Sufferers Requiring Assistance (Sinasra), Namibia has come a long way when it comes to questions of equality and awareness of albinism.

Before the founding of Sinasra in 2001, there was no organisation or government entity that specialised in the needs of people with albinism. Today, Namibians born with albinism are entitled to free medical service, sunscreen and information on how to lead a life without subjecting oneself to the harmful rays of the sun.

The word albinism comes from the Latin word albus, meaning white. Albinism is caused by a defect in one or several genes that produce and distribute melanin. The lack of melanin is characterised by an absence of pigment in the skin, hair, and eyes resulting in a light complexion.

Although most notable features of a person with albinism are in their appearance, the skin’s inability to protect itself from sunlight is only one of the symptoms of albinism.

“One of the biggest issues people born with albinism face is problems with eyesight,” Stoermer explains.

According to Sinasra, 90% of the albino population has problems reading.

Difficulties in seeing and the lack of tools to assist eyesight contribute to the high number of learning problems common to people with albinism. In spite of the difficulties in learning, Stoermer is quick to point out that the issue lies in the lack of equipment, not capabilities.

“Albinism is not related to the intellectual abilities of a person,” Stoermer says.

When talking about the overall situation of albinism in Namibia, he emphasises that the current state of awareness and action is good and progressing.

Even though the organisation has heard of rumours of persecution, no recorded evidence of violence against people with albinism in Namibia has ever come to the knowledge of Sinasra.

In comparison to countries where the persecution of people with albinism is prevalent, Namibia is an exception. On the other hand, acts of violence against albinos may not be experienced, but neglect still remains critical.

According to Stoermer, ignorance is most commonly manifested in the neglect of the special needs of a child with albinism. This neglect in turn results in the inability of the child to develop to his or her full potential.

“Our point is not to find out the number of atrocities done against people with albinism. Our point is to create awareness and eradicate the stigma associated with albinism,” he says. With regards to the creation of awareness, the founder of Sinasra also hopes to see a change of perspective in the ways of discussing and representing albinism.

“People with albinism are not sufferers. They are not victims, but equals.” Looking back at his childhood, Tove finds that the reality a child born with albinism faces today is very different from the reality he was born into 20 years ago.

“When you look at the world today, people are aware that there are bigger issues than the issues of skin colour and albinism,” he says.

Even though Tove’s confidence comes from within, the young man makes it clear that he owes his strength to his family who have been supporting him by all means possible. He however remains cognisant of the fact that not all are as lucky as he. He realised at an early age that prejudice towards people with albinism are highly dependent on the culture one is born into.

“As I was brought up in a city with people representing different views and beliefs, I have been able to experience all of these perspectives. For some I have been a ghost, for some something special and to others just the same as anybody else,” Tove elaborates.

Aside from having a supportive family, seeing people with albinism in posts ranging from ministers to models has made it clear that it is what you do, not what you look like, that counts, Tove notes.

“Everything depends on confidence. It is about loving yourself and your skin the way you are,” he says.

– Nampa

Source : The Namibian