Background
On the evening of November 30th, 2022 at around 11 PM, a man broke into a home in Kasungu, Malawi and stabbed a three-year-old girl in the neck, which killed her, before dismembering her arm while she was asleep. As gruesome as this may sound, attacks like this aren't necessarily unheard of in certain parts of Malawi and various regions of the continent, particularly because the victim was a person with albinism (PWA). Amnesty International reports that there has been over 170 attacks on PWA since 2014. In certain parts of Malawi, some have been called 'mizukwa' (ghosts) and 'nzungudala' (fake white person); women with albinism are called 'machilitso' (cure) -referring to the belief that having sex with them can bring about healing even to difficult ailments including HIV/AIDs (Amnesty International Report on Malawi).
Street protests following the murder of the three year-old girl in Kasungu
In Malawi, estimates predict there are around 10,000 PWA, which translates to about 1 in every 1,800 people. They are born with a rare, non-contagious, genetically inherited condition in which a lack of melanin pigmentation makes hair and skin pale and also increases vulnerability to sunburn and skin cancer. In a tropical climate like Malawi, the strong sun can be a severe burden for the skin of PWA. On the contrary, in North America and Europe the prevalence is more like 1 in every 20,000 people compared to 1 in about every 5,000 for most of sub-Saharan Africa. But why the stark difference? There seems to be several explanations, but for one the lack of pigmentation can actually go unnoticed in Scandinavian countries for example, but in African countries the lack of pigmentation stands out and its consequences present vastly different challenges. In Europe the most common type of albinism is OCA1 (oculocutaneous albinism type 1), while in Africa the most common type is OCA2 (oculocutaneous albinism type 2). People with OCA2 usually have fair skin, but are often not as pale as people with OCA1.
Fortune, Wealth, and Prosperity
Many PWA live in fear due to widespread superstitious beliefs in some regions of the country surrounding the use of their body parts in exchange for fortune, wealth, and prosperity. The risk of abductions, killings, and mutilations of their body parts exist on the basis that they can be sold as a hot commodity to traditional medicine practitioners.
Even the dead are not left in peace. In some cases, grave robbers have exhumed corpses to retrieve the bodies and bones of those with albinism, as they can be worth thousands in the black market and oftentimes their bones are equated to gold.
What is being done? Steps to end the violence and protect the rights of PWA have been slow and poorly enforced. In 2018, the government and the United Nations developed the National Action Plan on Persons with Albinism. The plan was designed to discourage attacks and provide PWA with greater protection, in part by giving out hand-held security alarms. The intent was that they would make a loud and repeated sound to avert potential attackers and help alert neighbors in the community of a threat. However, a major caveat is that the devices are battery powered, and for those living in rural areas with no electricity, the problems and fears persist once the battery runs out.
The Association of Persons with Albinism is also trying to sponsor young PWA from rural areas to go to boarding schools in urban areas, where there are extra security protections for them. The government also pledged to build 793 homes across all 193 constituencies in Malawi to provide secure homes for PWA within the next five years (Nyasa Times). However, financial troubles have placed a bump in the road and based on the current pace, it may end up taking another 50 years until all the homes have been completed. In the plan, the government intends to construct fenced houses, which are strategically close to other houses in the community to ensure that PWA receive maximum security from the neighbors. The homes will also have toilets, bathrooms, store rooms, and a kitchen, but critics argue the strategy could backfire by isolating PWA even further to make them appear a more vulnerable target.
government developed home for PWA
Conspiracies lead to unwarranted stigma
Social discrimination towards PWA is a serious problem that persists throughout many regions of the world. However, due to low education levels and lack of awareness, conspiracies about why PWA look the way they do can spread like wildfire. Some claim albinism to be a contagious disease even though it isn't, while others claim it to be a punishment from God for an ancestor's wrongdoings. Another common myth is that if a pregnant woman looks at a PWA, she will bear a child with albinism herself (Albinism in Malawi: knowledge and beliefs from an African setting). As a result of these beliefs, the quality of life for PWA can be compromised. These deep rooted systemic and cultural discriminations ultimately result in low school attendance, poor access to quality healthcare, difficulty in dating and getting married, and lack of employment opportunities and economic stability (Albinism in Africa as a public health issue). Additionally, children with albinism face the risk of being bullied and isolated by their peers. Out of fear for the safety of their own children living with albinism, some parents may even keep them hidden at home, and ultimately out of school.
As a result of public shame, superstitions, and lack of education among other factors, even family members can collude in or instigate attacks on their own. For example, in January 2016, a middle-aged woman was found mutilated in a national park in central Malawi. She had been tricked by her own brother and two other men, who took her on a trip through the park, where they then proceeded to kill and dismember her. In fact, according to one report from the United Nations, most attacks on PWA come from close relatives of the victim.
What needs to be done?
While progress has been made to place more prioritization on the rights and protections of PWA, it has been very slow and gradual. There are many more things that need to be done to address the health and social needs of PWA. Some areas to start with would be conducting further research to determine the true prevalence of albinism in the country, integrate albinism awareness and education in school curricula, train health care providers at health centers about albinism and the effects that UV exposure can have on them, providing affordable sunscreen and protective clothing to PWA, and conduct targeted sensitization campaigns in the country to educate the population of albinism and its etiology (manner of causation).
Overstone Kondowe became Malawi's first elected MP with albinism in 2021