Persons with Albinism (PWA) suffer from pervasive myths and misconceptions that make them isolate themselves from the public. They are called derogatory and demoralizing names like, ‘zeru zeru’ to mean mystical ghost-like beings.
Albinism is a non-contagious, genetically inherited condition that results in a lack of pigmentation in the skin, hair and eyes, causing vulnerability to sun exposure and bright light.
Some societies believe that those with albinism are cursed with a contagious condition. The majority of families deprive children with albinism of education as they perceive them as a shame to society while their education is seen as a waste of time.
Albinism is recognized as a disability in Kenya and their rights are provided for in Article 54(1) (a) of the constitution which states; “persons with any disability should be treated with dignity and respect and should be addressed and referred to in a manner that is not demeaning”.
Although the constitution guarantees these rights, PWA continue to suffer constant bullying from members of society and even those in authority.
In some cases, like Tanzania for instance, PWA suffer psychological disorders as the victims endure threats of being hunted for their body parts which are believed to bring good luck. Some victims are unfortunate as they are sadly murdered and their bodies badly mutilated while their parts are harvested. In the black market, for example in Tanzania, in 2009, senior police officers in Dar es Salaam stated that a “complete set“ of body parts of PWA including all four limbs, genitals, ears, tongue and nose was fetching the equivalent of 75,000 US dollars. At this price, demand for PWA body parts is spurred and sustained in a region where most subsist on or below poverty levels.
While it is believed that body parts taken from live and screaming victims increase the potency of muti medicine, the price that consumers are willing to pay for body parts appears to have driven some perpetrators to also rob the graves of PWA for body parts.
In 2010, in Kisii County, a woman named Esther murdered her 4-month-old baby who was born with albinism, after her husband threatened to divorce her if she didn’t get rid of the child because the child was considered a curse and a disgrace to the family.
Article 54 (1) (e) “A person with any disability is entitled to access materials and devices to overcome constraints arising from the person’s disability”. In order to uphold this right, the government launched a free sunscreen program which aims to provide sunscreen for all persons living with albinism. The challenge in actualizing this goal is that the information is sparse.
There is a need for creating awareness through campaigns with the involvement of paediatricians, teachers, faith-based organizations, traditional healers, and midwives, to educate communities about albinism and empowering families on the necessary measures that will help prevent skin cancer and other diseases in their children with albinism hence preventing infanticide.