Albinism: My complexion or my person?

Indisputably, the first thing you see is my complexion but beyond that, I am a human being just like you.  For decades now, persons with albinism experience high levels of stigma and are constantly ridiculed in our society. In addition to this, there are a lot of superstitious and misguided beliefs associated with albinism.

Some people erroneously believe that albinism is contagious and, therefore, do not want to have any form of association with persons with albinism.

Others regard persons with albinism as precious commodities that have magical powers. They believe that concoctions made from body parts of persons with albinism can make one rich and as result abduct and kill them for rituals in certain African countries. Some also believe that having unprotected sex with a woman with albinism can cure a man with HIV.  All these misconceptions put the lives of persons with albinism at constant risk.  

It stands to reason that the high level of ignorance with regard to albinism, especially in the African society, exacerbates the persecution and segregation of persons with albinism. The panacea to this issue then is “education”; there is the need to create awareness of albinism and this must be done now. Persons with albinism are in present and constant danger and the education must be immediate and consistent. People must be well informed about albinism because it is greatly misunderstood.

June 13 marked International Albinism Awareness Day; a day set aside by the United Nations (UN) to spread information about albinism and to avoid the mobbing and discrimination of persons with albinism. According to the UN, the International Albinism Day aims to increase global attention to human rights. It also aims to clear prejudices people have concerning albinism and to inform the general public about this inherited genetic disorder.  

According to the Ghana Association of Persons with Albinism (GAPA), the theme for this year’s celebration is “Advancing with a Renewed Hope”. The theme focuses on the expectation of countries, organisations and individuals in the struggle to promote the security, fundamental human rights and freedom of persons with albinism. It also envisions a new hope as countries continue to improve the security of persons with albinism and try to ensure their freedom and full access to society.

Let me take this opportunity to educate my readers on albinism. Albinism is a very rare genetically inherited condition which affects approximately one in 20,000 people worldwide. Across African countries, persons with albinism are classified among the vulnerable groups of society, which includes persons with disability.

Albinism occurs when a person inherits two mutated or altered genes, one from the sperm of the father and another from the mother’s egg during fertilisation. This results in little or no production of the pigment melanin, which determines the colour of the skin, hair and eyes.  It is important to note that the parents themselves do not need to have albinism.

Albinism increases sensitivity to sun exposure, hence persons with albinism may be more inclined to developing skin cancer or wounds. Nevertheless, this can be avoided by being in the shade or using appropriate sun screen lotions.

Persons with albinism always have poor vision due to the abnormal development of the retina and abnormal patterns of the nerve connections between the eye and the brain. Visual aids; corrective lenses, reading glasses etc. can be helpful in correcting these vision problems. Although albinism cannot be cured, people with albinism can live normal lives.

When people are well informed about albinism, it will reduce the high level of stigmatisation and persecution of persons with albinism.

With this information, we realise that albinism is not contagious.

So now, what do you see? My complexion or my person?

This article was written by  Here for Perfection (H4P) Organisation; a disability media advocacy non-governmental organisation based in Ghana. Contact: 0208686777 or Email: h4pcrew@gmail.com