Living with Albinism

Living with albinism is daunting and challenging especially in Africa and Nigeria in particular. Despite the health challenges (low vision and skin cancer), persons with albinism in Africa face several stigma, discrimination, abuse, dehumanisation 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. However, 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 something wrong done by the parents. In some communities, it is believed that there was something wrong with the mother. For centuries, 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 and Nigeria in particular. Without enough information on the condition, parents, families and communities have been at pains to explain the condition when a child with albinism is born.

Albinism

Many women have been divorced by their husbands and shunned by families after giving birth to children with albinism. They have been accused of sleeping with men of other races; of being cursed and unclean; and of being witches. Children with albinism have also been hidden from the public, forbidden from socialising with others and treated as outcasts. For instance, it is this kind of stigma that led to the killing of a child born with albinism by her mother in June 2011 in Gboko, Benue State, North Central Nigeria. The mother claimed that her husband had convinced her to kill the baby since she was born with albinism and hence a bad omen and a disgrace to the family. She was told by the family that if she does not do away with the child she will be excommunicated.

Persons with albinism continue to suffer stigma, prejudice, stereotyping and discrimination in Nigeria. It 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. They are a visible minority and are in every part of Nigeria subjected to open discrimination.  Discrimination infringes on their fundamental human rights and basic freedoms.

 

The use of derogatory names for persons with albinism has led to prejudice and stereotypes which lead communities to condemn them based on the condition rather than appreciate their humanity first. In Nigeria, most of the descriptive terms used to refer to persons with the condition are derogatory and demeaning. They seem to suggest a lesser being.

Persons with albinism are routinely shunned from employment by both private employers and governments due to their condition. They are thought of as being incapable or as being a burden. Sometimes, they are employed but assigned tasks that require them to work for a long time in the sun which exposes them to the risk of developing skin cancer. The condition also causes sight impairments which mean that most PWAs cannot pass the vision component of a driving test yet some employers invariably request drivers licenses even when such a criterion might not be necessary to fulfil the post. Also PWAs, even when qualified, are routinely discriminated against. These factors make it hard for persons with the condition to find an employment as they are shunned by employers including governmental bodies. 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.

For 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 other instances, 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. This in turn denies them livelihood options hence the abject poverty that many live in. Lack of education and life skills also limits their active participation in local, national and international affairs. Some families, out of ignorance and due to stigma have also failed to take children with albinism to school in order to hide them from the public or thinking that they are not intelligent enough. Education is a basic right for all and persons with albinism should not suffer exclusion. Any State/government that fails to ensure the fulfilment of this right for persons with albinism is violating international human rights law.

All persons are born free and equal in rights and dignity. Persons with albinism are human beings and they deserve inclusion, participation and freedoms enjoyed by every other person. They are part of the human society and the diversities that make it. When they suffer discrimination, violations, and abuses, the human race suffers too. Their genetic condition requires that the society treats them as a special minority. Special sub-rights to safety, health, education, meaningful employment and non-discrimination should be ensured. Governments, medical profession and organizations, civil society groups, the media and individuals of good will should help PWAs achieve their aspirations in consideration of their challenges in terms of health (skin and vision) as well as the general stigma that they experience.