Newton-Ray Ukwuoma reports on the uniqueness of albinism and why albinos do not enjoy certain luxuries, particularly driving and what can be done to improve their vision both day and night.
Many people in parts of Africa, especially Nigeria, are familiar with albino. Albinism is a condition caused by a genetic mutation which incapacitates body cells from producing the usual amount of melanin in the skin, hair and eyes. The condition also shapes the medical, psychological, social and emotional wellbeing of an average Person Living With Albinism.
Nigeria is known to lead the world in albinism prevalence. An estimated two million people live with it in Nigeria. In actual fact, the population of albinos in Nigeria is the highest in the world as, in the United States for instance, about 200,000 people are affected, while one in every 4000 people in South Africa is an albino.
Nevertheless, this figure is expected to change when the Socio-Economic and Demographic Status of Persons With Albinism (SEDSPWA) releases its ongoing nationwide baseline survey results. But regardless of the survey results, experts believe that Nigeria’s leading position in global albinism prevalence may remain sacrosanct.
It is interesting, however, that the sheer size of albinos in Nigeria has not translated to a better socio-economic welfare package for them over the years. Unlike other vulnerable groups, albinos are among the most neglected group in the country; many are without education and bedevilled with stigmatisation and discrimination. The lack of a national and institutional framework directed at fighting the cause of albinism has been blamed for the deepening challenges faced by PLWA.
There are actually socio-cultural beliefs about them to the extent that some societies believe albinos have spiritual connections. The Yoruba, for instance, refer to them as “eni orisa”, or associate of the gods. Many indeed are convinced that “afin” (albino) could be used for money rituals. The albino’s skin colour, more than any other feature, stands him out even in a market place.
However, apart from the genetic issue that albino has to contend with, in Nigeria, for instance, he is frequently a target of social abuse and regarded as an object of scorn. Albinos have become a stereotype even in dramatic performances. They are made fun of as not having the best of sight and cannot see well in the afternoon.
But beyond all this, not many know that albinism presents other severe implications, particularly for those with the condition. Most of them cannot enjoy the common luxury of driving a car without suffering some backlash.
Challenges of albino drivers
Recently, a new concern was raised about how the challenges of low visual acuity are affecting the driving experience of many albinos, disenfranchising them from driving. Recently, during a scholarship endowment of a blind albino by the Onome Akinlolu Majero Foundation (OAMF) at the University of Lagos, Onome Okagbare, the co-founder of OAMF and herself an albino, told the story of how she treated severe migraine within a year of driving her mother’s car.
Fascinated by the opportunity to drive, despite living with albinism, Onome Okagbare said she applied for and was issued a driver’s licence at the age of 19. But within one year of sitting behind the wheel, she began to treat severe migraine.
Unsure of the cause of her incessant headaches in spite of her use of medicated sunshades, Onome who was undertaking her one year compulsory national youth service in a school in Lagos at that time, was subsequently advised to abstain from teaching.
While sharing her story with Sunday Tribune she said: “I could not tell what caused it, but my parents and I began to track the problem. We started eliminating probable causes like talking loudly while teaching, stress, sunlight and so on, but when we took out driving I began to feel better.
“I quit driving, but I am amazed because I have used glasses all my life and my sight is basically the same,” she lamented.
Peculiar cases
When Sunday Tribune inquired from other people living with albinism, the response varied. For instance, Obi Ifeanyi, 25, a PLWA, who works at IMO Entertainment in Lagos, said, “I can drive in the day, but not at night. At night, the headlights of other cars confuse my vision, though I don’t have headaches when I drive, I don’t use medicated glasses and I don’t squint, I’d rather drive in the daytime than drive at night.”
“I have an extremely poor vision. I cannot read on white background on my laptop or phone. Bright light disturbs me. I squint, even though I don’t use glasses to read, I cannot drive,” said Emmanuel Dairo, a PLWA and Master’s Degree Holder in the Department of English, University of Lagos.
A 26-year-old young man living with albinism, who simply identified himself as Daniels, said resignedly: “I cannot see objects far from me. I squint. Even with my corrective glasses, my vision is limited to near objects, so I can’t even drive.”
However, not everybody living with albinism is disadvantaged when it comes to driving. Mr Ugochukwu Orji, 40, a self-employed logistician who also spoke with Sunday Tribune said: “I have been driving since 1988. I use glasses for reading. I use sunshade when I am in the sun and once I put on a sunshade, I don’t squint. And because I don’t squint I focus better. I can drive from Lagos to the East.”
Low vision has become the most disturbing deformity that PLWAs complain about. Studies show that about 80 per cent of albinos who use corrective glasses do not have perfect vision.
Speaking about the peculiarity of albino vision, Dairo, told Sunday Tribune that “there is not enough research about albino vision.
“The pigmented person does not understand how the albino vision works. No albino vision is the same. Some albinos have better sight than others. I believe that more intellectual discourse on this subject will be of immense usefulness to people living with albinism and those who deal with them on a regular basis.”
For Mr Ugochukwu Orji, research on the peculiarity of albino vision “should concern not only stakeholders of all sectors, it should mostly concern the government and Non-Governmental Associations concerned with albinism.”
Clinical Remedy
Dr Felix Eniola Abayomi, the Assistant Chief Optometrist at the Guinness Eye Clinic, Lagos University Teaching Hospital (LUTH), speaking on the case, disclosed that prescriptive eyeglasses do not correct all the forms of vision defects in albinos. According to him, low vision, for instance, which is an eye disease in which the visual acuity is as low as 20/70 or less, the leading vision impairments of most albinos, cannot be managed with only medicated glasses.
Speaking to Sunday Tribune, he said, “The camera was modelled after the human eye. If in the process of taking a picture, you shake your hand, the imprinted image will most likely be blurred. The same thing happens with albinos who suffer ocular albinism: when they look at an object, it is shaky, because they squint. This is why the images they see are not clearly registered in the brain, but blurry.
“With corrective eyeglasses squinting can be managed, but corrective eyeglasses do not improve the vision of the albino, especially when it concerns seeing distant objects. This is why albinos who wear corrective eyeglasses for photophobia, nystagmus and ambryopia, will need an enhanced equipment to be able to see far object which is the case of driving.”
The specialist in low vision advised people living with albinism who are interested in driving to fit their glasses with telescope to improve distant vision.
“Parents should not abandon their children because they are albinos. They should rather bring them to a specialist in low vision. We will give the child standard glasses fitted with telescope to help them see distant objects. With the telescope, they can drive like other people who do not have albino,” he said.