• Lior Sperandeo

BONES | Albinism in Malawi.

Updated: May 24

Under the blazing East Africa sun - 7,000 to 10,000 people live with albinism in Malawi.

And these people are at high risk.

I recently had the unique opportunity to get an inside look at this rare phenomenon, and meet those who were attacked and survived to tell their heartbreaking stories.

Alongside physical challenges like vision or skin problems, people with albinism in Rural Africa further face social stigma and isolation. What's worse however, is the primitive idea that their bones can make others rich or cure sickness is hunting them.

A wave of violent attacks have taken place across a number of African countries including Tanzania, Mozambique and Zambia. But today, in Malawi, the condition is more common than anywhere in the world.

According to the folklore, a body with albinism is considered to contain 'healing properties' and can increase wealth and influence. As a result, witchdoctors use their organs for 'medicinal purposes' which are then sold at tremendous prices.

When I first heard these things, I had a hard time believing it!

I mean, what year are we living in again??

How can a phenomenon like this continue in such an advanced world, right? I spent ten days running around Malawi attempting to document the phenomenon. I found no wizards nor bones, but many who had survived terrible assaults because of their condition.

Albinism is a genetically inherited condition, characterized by the complete or partial absence of pigment in the skin, but also in the hair and eyes.

The absence of melanin pigment, which is believed to protect skin cells from UVB radiation damage, leads to serious sunburns, eyesight deficiencies, and sometimes even blindness. 

With no natural protection from the sun, they have no choice but to hide behind closed doors. Sunglasses and sunscreen - basic products for us - are rare for them. Consequently, being born with albinism in East Africa can be a death sentence even without any warlocks and witches around.

In recent years, western media has covered the wave of attacks in East African countries with headlines that tell us spooky stories of kidnappings and murders.

My experience was different. I quickly realized that before or after this bizarre phenomenon, people with albinism in rural Africa suffer.

Their enemy is not only human nature but nature itself.

It starts with the sun.

Since people with albinism do not have protective melanin, they need to take extra care of their skin in the sun. They are urged to apply sunscreen, and to wear sunglasses with a hat. People with albinism of sub-Saharan heritage are at a 1000-fold higher risk of developing skin cancer than the general population.

But these precautions can get incredibly costly for rural Africans.

Secondly is discrimination. We are used to seeing diversity: a bright, dark, blonde ginger, tall, short. But try to imagine the moment a Malawian mother who has never left her village gives birth to a baby girl with albinism.

This was the case with Annalasi, who I met in the capital, Lilongwe.

She told me about the panic she experienced at the birth of her daughter Edina. In a society where the education and health systems are basic at best, nothing prepared her for such a situation.

Questions about the identity of the child or the woman's loyalty also began, and sadly lead to Adina's father leaving.

Then there is the social aspect of albinism. Just ask Rhoda, young albino student.

Rhoda told me that in her school - which has no fewer than 3,000 children - she is the only one that looks completely different. I accompanied her one morning to school to try and understand the emotional consequences that come with living with this condition.

The teachers are few and far between. The kids are simply kids - but they know how to be mean. Each step Rhoda takes is accompanied by thousands of eyes; each pair sarcastic and threatening.

Although Rhoda has two Albino sisters, and you can tell she comes from a supportive home, though her fear is genuine and daily.

More and more children with albinism in Malawi no longer go to schools for similar medical or social reasons.

But don't let the sight confuse you.

Rhoda might look like a gentle ceramic doll, but she has learned the hard way to be as strong as a lion. And Rhoda is not giving up.

She dreams of studying medicine to one day help the community that continues to suffer with albinism; she knows that without education, it won't be possible.

Furthermore, I met John and Alfred in Southern Malawi. The brothers survived an assault that almost ended in murder.

Late at night, criminals broke into their home with panga knives (machetes) and began to cut at Alfred violently. Before he lost consciousness from bloodshed, he was able to scream and call for help.

His brother John, who was sleeping in the room next door, heard the shouts. He rushed to his aid, and, after a fight, managed to get rid of one of the attackers. John was cut in the face and chest, losing a lot of blood in the process.

More than 120 assaults have been recorded in Malawi over the past two years. Stories like this bring with them a positive wave of protest that demand change and security for this community.

Consequently, the media is giving the topic a stage, and government intervention is growing.

But what use would this demand for change be if all the discrimination, stigma and lack of social protection simply continues?

Today, an albino man is hiding in his house because he is afraid of being kidnapped. Tomorrow he will keep shielding in his home from all the other troubles that await him outside.

Is the fate of the Malawians with albinism to die young from skin cancer or go blind without any proper treatment?

A window of opportunity is now open as the topic continues to make headlines. An opportunity to get to know those who survived the attacks and are alive to tell their story.

An opportunity to hear the actual needs of this community who are tired of living in fear.

Above all, an opportunity to correct past injustices and create security not only against racial or offensive attacks but also from the sun, social security, job security, and the security to grow respectfully as part of the society in which they were born to.

Not as blacks nor white - but as human beings.


©2020 by Lior Sperandeo