Phenyo and Maatla walked down the street huddled under a single umbrella. These two boys are childhood friends who live next door to each other in Mogoditshane. Whilst they are fully covered from the neck down and have applied plenty of sunscreen lotion, the strength of the sun’s ultra violet radiation was so intense and penetrated the fabric of their clothing. Phenyo and Maatla are people with albinism.
Maatla says having albinism, a genetic condition in which the body produces lower levels of melanin (the pigment in your skin), has been difficult for him. “I do not normally go out on the street during the day. I usually wait for the sun to go down,” says Maatla speaking to The Telegraph. Maatla says the albinism community in Botswana continues to face human rights violations especially lack of proper access to health services such as sunglasses, topical creams and hats to shield them from the sun.
“Recently i spoke to my uncle in Maitengwe and he said whenever he goes to the clinic for sunscreen lotion, he never finds it in stock and is always told to come back another day. He has since decided to source the lotion elsewhere using his own money. Without this important lotion, people with albinism could get skin cancer which shortens their lifespan drastically,” he says.
To confirm these concerns, this publication randomly called some clinics and hospitals to find out if they had any sunscreen lotions in stock and some indicated that they had while most said replied in the negative.
In 2020, Amnesty International – a non-governmental organisation which focuses on human rights – said people living with albinism in the SADC region continue to live in fear of being hunted down, slaughtered and harvested for their body parts. “SADC leaders must take a pledge to prioritise and take the necessary measures to ensure the right to life, security and safety of people with albinism,” reads a statement from the agency.
Whilst there are no known reported cases of people with albinism having been killed in Botswana, in Tanzania over 75 people living with albinism have been killed since 2014. In 2017, Chairperson of the Albinism Society of Botswana, Sergeant Kgosietsile, expressed concern that since Tanzanian traditional doctors practice in Botswana, it was quite practical and sensible to conclude that they will do here what they do back in their country.
“If body parts of a murdered albino are supposed to make strong muti in Tanzania, Batswana doctors are definitely going to want to engage in similar practice,” he once said.
Miriam Mwanza who was born in Maputo in 1990 to a Mozambican father and a Motswana mother shared her grim and emotional story with this publication. Now 29 years, Miriam says she was born with albinism and her parents had to hide her for the first ten years of her life away from the community because of escalating attacks on people living with albinism back then.
“I was too young to understand what was going on back then but my father told me that people had erroneous beliefs and myths influenced by superstition, which promoted marginalisation, social exclusion, stigma and discrimination. Sadly, there are still lots of people with albinism who face such challenges and threats their entire lives. Simply because I am now staying in Botswana does not mean I should rest on my laurels. A lot of work needs to be done to drive away the stigma, discrimination and exclusion faced by people with albinism,” she says.
In a bid to enhance their visibility, the Albinism Society of Botswana is still pushing for Statistics Botswana to identify the number of people living with albinism when they conduct the country’s population and housing census. According to the Red Cross, a complete set of body parts for a person with albinism costs around P750 000 and attackers use their limbs and other body parts as charms meant to guarantee success in love, life and business
We also caught up with a primary school teacher living with albinism. Due to the sensitivity and nature of his job he would not disclose his name but told The Telegraph that whilst Botswana is very friendly towards people with albinism as compared to other African countries, there was still a lot of misinformation and myths about albinism.
“I am primary school teacher but I have certain students who are scared of touching me. I have since discovered that these students have been fed with the wrong information from a young age and that is why they demonstrate such behaviour. However other students have a good understanding that albinism is just a genetic condition and doesn’t make a person less human,” he says.
He also says he has never experienced any form of violence although from time to time people verbally abuse him when he is at the bar. As for what could be done to improve their plight he says “government should do more awareness campaigns and sensitisation programs especially from a young age on discrimination and other difficulties faced by persons with albinism.”
He also says people with albinism should enjoy the same human rights and freedoms guaranteed by international and regional human rights instruments.
One parent who spoke to this publication on condition of anonymity says his daughter who was born with albinism mainly struggles with vision impairments. “My daughter suffers from photophobia (sensitivity to light) because her eyes lack pigment to some degree. I had to change all lights at my house to fluorescent lights because they provide a warmer tone which is gentle on her. I also had to put a tint on the windows in my car because sometimes the light from the sun can be blinding and painful when you are in the car. Since I am out of work it has been expensive to do all these things and we do not receive that much support,” he says.
Mokgele also says his daughter is required to finish exams at the same time as other pigmented students whose sight is normal. “This has resulted in her poor academic performance,” says Mokgele.
He also says this might be the reason why the majority of people with albinism are very poor and, in some cases, isolated from mainstream community activities.
