Updated: Jul 30, 2020
Under the blazing East African sun reside a hundred thousand people with albinism.
Their existence is defined by distinct physical challenges like visual impairment and an increased potential to develop skin cancer.
What is worse however, is the crude myth that the bones of a person suffering from albinism contain healing properties to be used by traditional healers and witches, and have the ability to increase wealth and influence.
This old myth has led to their violent persecution, isolation and stigmatization from society. In some instances, witchdoctors use their organs for 'medicinal purposes' which are then sold at tremendous prices.
When I first heard about these stories, I had a hard time believing it.
How could scenarios such as these play out in our contemporary world?
Maybe these stories are being taken out of context?
A wave of violent attacks have now taken place across African countries including Tanzania, Mozambique, Zambia and more.
But today, in Malawi, the condition is more common than anywhere in the world.
These stories - though terrible - had piqued my curiosity, and I had to know for myself if they were true. I had the unique opportunity to get an inside look at this troubling phenomenon, meeting those who have been attacked, and survived to tell their heartbreaking stories.
A shout for justice must be heard.
But first, what is Albinism?
Albinism is a genetically inherited condition, characterized by the complete or partial absence of pigment in the skin, hair or eyes.
The absence of melanin pigment, which is believed to protect skin cells from UVB radiation damage, can lead to a variety of serious complications including sunburn, deficiencies in vision, and sometimes even skin cancer.
There is no known cure for this absence of melanin that is central to albinism.
With no natural protection from the sun, people with albinism in rural East Africa have no choice but to hide behind closed doors. Sunglasses and sunscreen - basic products for us - are rare, and difficult to access.
In recent years, the media has covered the wave of albinism related attacks in East African countries with headlines that paint spooky stories of kidnappings and murders.
However, being born with albinism in East Africa can be a death sentence without even taking into consideration the social stigma that soon follows.
My experience was different.
I spent ten days running around Malawi attempting to document the myth.
I found no wizards nor bones, but many brave people who had survived terrible assaults because of their condition.
I met victims of superstition who are heroes of an everyday struggle; their enemy not only human nature but nature itself.
It starts with the sun.
Individuals of sub-Saharan heritage, with albinism, are a thousand times more at risk of developing skin cancer than the general population.
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.
But these precautions can get incredibly costly and limited for people living in rural Africa.
Discrimination and Stigma.
In the West, we are used to the sight of diversity: light, 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. The shock is real.
This was the case with A' who I met outside the capital, Lilongwe.
She told me about the panic she experienced at the birth of her daughter E'.
In a society where the education and health systems are basic, nothing prepared her for such a situation.
Questions about the identity of the child and the mother's loyalty also began, and sadly led to E's father leaving.
But A' never stopped loving her child for a second. She protected E’ and gave her undying love as any mother would. Eventually, her neighbors got used to the sight of E’ and realized that she was a perfectly ordinary, sweet child.
A' educated her neighbors through simple displays of love and affection.
Albinism also impacts the potential for education in young people. More and more children with albinism in Malawi no longer go to school for medical or social reasons.
I met Rhoda, a young student with albinism who deals daily with the social aspect of being a child with albinism.
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 - they know how to be mean. Each step Rhoda takes is accompanied by thousands of eyes; each pair sarcastic and threatening.
But don't let the sight confuse you.
Though her fear is genuine and daily - Rhoda has two sisters with albinism - and you can tell she comes from a supportive home.
She might look like a gentle ceramic doll, but Rhoda has learned the hard way to be as strong as a lion.
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.
Rhoda is not giving up.
What is the cost of life?
My next encounter was with 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. Rushing to his aid and, after a fight, John managed to get rid of the attackers. However, he too was cut in the face and chest, losing a lot of blood in the process.
Both men survived, but instances like this reveal how far we have to go as a community. When myth overshadows human life, education and dialogue remains the key.
A way forward
The media is slowly shedding light on this issue, and government intervention is growing. But the shout for justice for people with albinism in Africa needs to be much louder than it currently is.
And we can help bring that change. Not only against such offensive attacks but also from the sun and from social stigma.
The fate of people with albinism should not be to die of old myths or skin cancer at an early age. All they have ever wanted is to grow respectfully as part of the world in which they were born.
Not as blacks, whites or ghosts - but as human beings.
International Albinism Awareness Day 2020
"Made To Shine" is the theme for this year's International Albinism Awareness Day.
The theme was chosen to celebrate the achievements and successes of persons with albinism worldwide.
It is also a call to stand in solidarity with people with albinism through their challenges.
In this unprecedented time, people with albinism continue to suffer all types of human rights violations.