By Abdul Tejan-Cole
Today, June 13, the world observes International Albinism Awareness Day. Adopted by the UN General Assembly in 2014, the day focuses on raising public awareness about albinism and preventing attacks and discrimination against persons with albinism. All UN member states, as well as international and local organizations and civil society, are encouraged to hold and participate in events and activities to mark the day.
This year’s theme, “Still standing strong” seeks to highlight and celebrate the resilience and strength shown by those affected by albinism, despite the immense challenges that they face resulting from myths, misconceptions and pervasive discrimination. It is a call to “recognize, celebrate and stand in solidarity with persons with albinism around the world, and to support their cause – from their accomplishments and positive practices to the promotion and protection of their human rights.”
People living with albinism suffer from abnormal skin pigmentation resulting from a hereditary inability to produce melanin in their skin cells. It is a congenital disorder characterized by the partial or complete absence of the pigment melanin in the skin, hair, and eyes.
Melanin is a dark pigment that is responsible for producing skin, hair and eye colouration. Persons with albinism suffer from vision problems and are susceptible to skin cancer. Lack or absence of melanin in the skin makes persons with albinism more susceptible to sunburn and skin cancers. It affects individuals and their families medically, socially and psychologically.
Albinism is rare worldwide but is prevalent in Africa. Around the world, between one in 17,000 and one in 20,000 people are persons with albinism. The prevalence in parts of Africa, however, is far higher than the global average. There is a dearth of statistics in most parts of the continent. Epidemiologic data on albinism, such as prevalence, were available for South Africa, Zimbabwe, Tanzania and Nigeria. According to a study on Albinism in Africa as a public health issue, prevalence as high as one in 1,000 were reported for selected populations in Zimbabwe and other specific ethnic groups in Southern Africa.
An overall estimate of albinism prevalence ranges from 1/5,000 to 1/15,000. Tanzania has the highest number of persons with albinism in Africa with an estimated prevalence of one in 1,200 people suffering from the genetically inherited condition. One out of every 4,000 South Africans lives with albinism.
People with albinism frequently face acute social challenges. At the root of all these problems are several myths and superstitions. In Tanzania, it is believed that ownership of the body part of an albino will make one rich. Another myth is the belief that "sexual intercourse with a woman or a girl with albinism can cure HIV/AIDS." The sacrifice of persons with albinism is believed also to "appease the god of the mountain" when fear of a volcanic eruption is possible, and it is believed that pulling the hair of persons with albinism can bring good luck. It has also been reported that "miners use the bones of persons with albinism as amulets or bury them where they are drilling for gold. There is also a belief that drinking the blood of a person with albinism gives extra magical powers.
These myths and superstitions often result in attacks and ultimately the murder and severe mutilation of people with albinism. Since 2006, over 600 attacks and other violations against persons with albinism have been reported in 28 countries in Africa. The attacks and killings of persons with albinism is an urgent human rights issue that requires immediate action.
Compounding these serious threats to life are the immense health complications faced by people with albinism, with little or no support to deal with them. They are sensitive to light and are almost universally near-sighted with astigmatism. Their skins are also susceptible to sunburn, laceration and cancer. This means that they have to make conscious efforts to ensure that they avoid the ultraviolet rays of the sun as much as possible, as they do not have or cannot afford customized skincare creams and gels to keep their skins protected.
They are discriminated against and face psychological and social challenges and human rights violations. In most African countries there is a myth that people living with albinism are less desirable than other humans. There is a common misconception that persons with albinism have low brain capacity and are unable to function at the same level as “normal people”. As a result, they are ostracized and excluded from most social and economic activities. This rejection by society of persons with albinism causes extreme trauma and stress which compound the health problems that persons with albinism face.
In many African countries, they are called pejorative names. In Zimbabwe persons with albinism are “sope” indicating that they are possessed by evil spirits. In South Africa they are called “inkawu” – the Nguni term for white baboon or isishawa, a Zulu word for a person who is cursed. And in Tanzania they are known as “nguruwe” meaning “pig”, or “zeru” which means ghost.
In Nigeria, persons with albinism tend to be more withdrawn from social situations to avoid being noticed. Also, they consider their society to be generally unkind and rejecting, even though they have close friends. Due to this socially rooted discrimination, the quality of life of people with albinism may be compromised. For example, they are more likely to drop out of school and face more difficulty in employment and marriage compared to the rest of the population. They also struggle to access education, with anecdotal accounts pointing to high school dropout rates among those of school-going age, due to a myriad of factors including bullying by their peers and classmates, exclusion and isolation given their physical difference. Besides, the state’s failure to implement policies of inclusive education that would address both the support and accommodation needed and the school culture and environment, has perhaps been the largest contributing factor to high school abandonment rates among persons with albinism. As a result of all of these challenges, 98% of persons with albinism in Africa die by the age of 40 years for reasons which could easily be prevented.
There are very few health services in Africa to manage albinism, and many of those living with the condition cannot afford badly needed sunscreen and protective clothing. An article in Africa Renewal noted that a bottle of sunscreen that lasts for two weeks sells for about $15 in Tanzania, a country where most people live on less than $1.50 a day. In Sierra Leone, it is more expensive and it is not easily available. Most do not receive support for impaired vision. Even mothers of children living with albinism are often abandoned after they are accused of infidelity or some abnormality. Whole families can also be excluded or ostracized for having a member with albinism.
Ignorance, superstition and myths are the root causes of the challenges faced by people living with albinism in Africa. As we observe another day, it is time for all of us within the continent to do more to ensure that we debunk these myths and try to save people living with this condition. States must commit to and fully implement the Africa Regional Action Plan on Albinism in Africa (2017-2021) endorsed by the African Commission on Human and Peoples’ Rights and the Pan-African Parliament. It contains many concrete recommendations to ensure that persons with albinism receive immediate attention on the issues affecting them.
In addition to psychosocial, medical, legal and socioeconomic support to rebuild the lives, for both victims, and surviving relatives, public education about the condition in all vernacular languages is extremely important. We need to integrate albinism awareness in the school curricula, especially to correct misconceptions about the causes of albinism. Our traditional rulers and faith-based organizations must also join in these efforts on traditional and social media, and help engage witch doctors and traditional healers that persons with albinism are human beings like anyone else, do not possess any magical powers and their body parts do not bestow fortune and health. It is not a curse or a spiritual ghost. It is simply a skin condition.
© 2019 Politico Online
