Living with Albinism

In Africa, living with albinism can be challenging. Despite the health challenges (low vision and skin cancer), persons with albinism (PWA) face several forms of stigmatisation, discrimination, abuse, name calling, dehumanization and sometimes brutal killings for money rituals.

In most communities across the world, albinism is hardly (or not) understood. Myths and misconceptions surround the condition. This is amplified in the sub-Saharan Africa largely because the light skin tone of persons with albinism stands out sharply in communities whose members are predominantly dark skinned.

In some parts of Nigeria, the condition is believed as ‘a curse’ or as some form of ‘punishment’ from the gods or the ancestors for some wrong done by the parents. In some communities, it is believed to be the mothers fault. In some communities, children born with albinism have been routinely killed immediately after birth by parents and mid-wives. Myths about albinism continue to persist in many parts of Africa. Without enough accurate information on the condition, parents, families and communities have used myths and superstitious beliefs to explain the birth of a a child born with albinism.

Many women have been accused of sleeping with men of other races, of being cursed, unclean or being witches.The lack of understanding has lead to women being divorced by their husbands and shunned by families after giving birth to children with albinism. In sme cases, the children born with albinism have also been hidden from the public, forbidden from socializing with others and treated as outcasts.They are seen as a bad omen. Unfortunately, this kind of stigma can lead to the killing of an innocent child born with albinism or can cause depression. 

While growing up, a PWA realises that he/she is a visible minority and in some cases continues to suffer stigma, prejudice, stereotyping and discrimination. In Nigeria, albinism is a condition that cannot be hidden and when a person with albinism is in a group of dark skinned people, he/she stands out as different.

The use of derogatory names for persons with albinism has led to low self esteem, prejudice and stereotypes which leads to unjust condemnation based on the condition rather than an appreciation. In Nigeria, most of the descriptive terms used to refer to persons with albinism are derogatory and demeaning. They seem to suggest a lesser being.

Some persons with albinism have complained about being shunned from employment by both private employers and governments due to the condition. We understand that due to the lack of factual information and education on albinism, some employees might have a bias and are of the opinion that PWAs are incapable or due to a bad experience or misinformation might assume PWAs as being a burden. Instances where a PWA is empolyed, tasks that require prolonged sun exposure might be asigned. We encourage PWAs to explain the risk of developing skin cancer.

Albinism also causes sight impairments which means that most PWAs cannot pass the vision component of a driving test. Some employers request drivers licenses even when such a criterion might not be necessary to fulfill the post. It is dishearting to know that PWAs, even when qualified, are routinely discriminated against. This is against international human rights law that guarantees non-discrimination based on colour and the rights to equal treatment for all and to a safe, meaningful employment.

Over the years, learning institutions in Nigeria have put students with albinism under the same conditions as other students without taking into account the visual impairment associated with the condition. In some parts of Africa, students with albinism are taken to schools for the blind while they are not blind. Poor vision may cause students with albinism to be slow learners either due to inability to see the black board clearly or inability to read books and other learning materials. The colours used in writing also matter because students with albinism have a problem with contrast. The text books and exam papers are mostly printed in normal fonts which may be hard for students with albinism to read quickly. Persons with albinism have a medical condition known as nystagmus or pendulous nystagmus. It sometimes makes the words wiggle on the page and makes it hard to focus on small narrow print. Students with albinism have also been required to finish exams at the same time as other pigmented students whose sight is normal. These conditions have led to poor academic performances and low education levels for persons with albinism.

Some families, out of ignorance and due to stigma have failed to take children with albinism to school in order to hide them from the public or think that they are not intelligent enough. Education is a basic right for all and persons with albinism should not be excluded. 

Discrimination infringes on the fundamental human rights and basic freedoms. All persons are born free and equal in rights and dignity. Persons with albinism are human beings and deserve inclusion, participation and freedoms enjoyed by every other person. They are part of the human society and the diversities that make it.

Rights to safety, health, education, meaningful employment and non-discrimination should be ensured. Governments, medical profession, organizations, civil society groups, the media and individuals should help PWAs achieve their goals in consideration of the challenges in terms of health (skin and vision) as well as the general stigma that they experience.