Strength Beyond All Odds: Living With Albinism In Nigeria
People with albinism are just like anyone else, with the same lifespan and ability to reach their goals. Watching Onome Okagbare-Majoro and Ameen Olatunji Yusuf better known as Teejay Ameen, two persons living with albinism as they prepare for their shoot with The Guardian Life, it is easy to tell that they are not as different from everybody else as society likes to think.
Unknown to many is the fact that animals and even plants can have albinism. Albinism is a genetic condition where people are born without the usual pigment (colour) in their bodies. Their bodies are not able to make a normal amount of melanin, the chemical that is responsible for eye, skin, and hair colour. So most people with albinism have very pale skin, hair, and eyes.
On June 13 of every year, the world marks International Albinism Awareness Day. This year’s theme is “Strength Beyond All Odds,” and the duo of Onome and Teejay are two people who have risen beyond the stigma of albinism.
Life As An Albino
Onome is a graduate of Mass Communication and has a Masters Degree in Communication, Media Practice, and Public Relations. She is the co-founder of Onome Akinolu Majaro Foundation (OAM Foundation), which is founded on the belief that enlightenment added with a little act of love and kindness can change the way people living with albinism are treated. On his part, Teejay is a graduate of Theatre Arts and is a broadcast journalist with a little over five years as an entertainment journalist, event host, and brand influencer.
Onome knew she was different as early as her primary school days when she realised she was the “fairest of them all” among her siblings and classmates in school. When she asked her mom why she was different, the response was that she is “made in the image of God.” As she grew older, her mom further explained to her what it meant to be a person living with albinism. Due to her condition, she was protected from activities that would expose her to the harsh rays of the sun. Sunburn is a recurring medical condition for PWA.
The reverse was the case for Teejay who never felt he was different.
His parents treated him like they did his siblings, and he did everything the other children did. Even when he went off to boarding school and was exempted from certain activities, he still fought hard to be included. He paid the prices in blisters, sunburns, and itching, but he took it all in good stride. However, he especially has had to work harder to prove that he is just like everyone else.
Teejay recalls his National Youth Service (NYSC) when he had to serve in Kano and the camp commandant suggested he return to Lagos because “you cannot survive here.”
“I did the three weeks there, I even hosted all the events at NYSC camp. I had burns but I wore it with pride but I just wanted to show that I am not disabled. Yes, I am special but everyone was born with a peculiarity and I can do what everyone is doing.”
Onome adds that because she is an albino, people expect less of her but she has been able to prove time and time again that being an albino is not synonymous with being dumb.
Fear, Myths, and Discrimination
Onome’s comment about being wrongly profiled as an albino geared the conversation to the myths surrounding albinos.
For Onome, she has had to correct the misrepresentation that albinos cannot eat salt or pepper. The Yorubas say, “afin o kin je iyo,” which means albinos don’t eat salt.
The misconception is that the consumption of salt causes the burns and blisters albinos have on their skin. On the contrary, salt is an essential dietary requirement and people with albinism like everyone else need to have salt in their diet to avoid an iodine deficiency that can cause goitre or hyponatremia, a condition characterised by low levels of sodium in the blood.
Interestingly, the phrase “Sun Not Salt” is one that is associated with the OAM Foundation as a mantra to enlighten the public about the misconception that salt is bad for albinos.
The misconceptions about albinos have also placed their lives in danger in different parts of Africa, especially East Africa and even in West Africa. There are those who erroneously believe albinos have a spiritual significance (wealth, political success, and good luck). They believe albino body parts are good for rituals and this myth has led to widespread killings of albinos for body parts. This black magic belief has led to booming demand for albino limbs and organs, with several killings of people living with albinism reported in countries like Tanzania, Malawi, Burundi, among others.
Onome and Teejay have also had their own fair shares of this wrong notion about people with albinism, especially when it comes to the myth around an albino’s hair.
“I have heard that my hair can be used to make money and I tease them about this. I go to a random barber and tell them, if you like to pack my hair, you are on your own. I am sure they have packed my hair before. I usually tell them, the day they make money from it, let me know so I can share out of it, at least I contributed to it. But it is wrong to think that if you take an albino’s body part, it will bring you good luck or wealth,” Teejay humorously shares.
There is also the discriminatory belief that albinos are products of infidelity especially when the child is from two dark-skinned parents. The mother gets the blame as she is accused of having had sexual relations with another man or with white men. Several others abound, like albinos not seeing in the afternoon, albinos being gods, albinos not dying but disappearing among several others.
Strength Beyond All Odds
With the several factors lying against them, Onome and Teejay have proven themselves to be as equally if not better than their peers in their chosen careers. They admit that they have had to develop thick skins over the years to withstand the insults, discrimination and what have you that they have had to go through because of albinism.
Teejay, who believes he has a strong personality, shares that he is more concerned about how albinos see themselves versus what the world thinks of them.
“Embarrassment is subjective. I have learned in life that you teach people how to treat you, so when I walk into a room and people expect me to be shy or quiet, they are always surprised when I open my mouth and speak. I am not concerned about someone who is trying to bring down an albino, but how that albino sees himself. Does he/she have self-love, confidence, and the right mindset about life?”
While preaching self-love and confidence all sounds easy, Onome admits albinos like herself and Teejay come from a place of the privilege of people who are educated and learned. She recounts that she learned to own the “hit single” about albinos- the popular ‘oyinbo pepper, shuku shuku pepper’ – that people sing when they come in contact with albinos. Her parents taught her to take the sting, mockery, and abuse from the song by owning it, so when the other children sang it, she sang along with them and danced. However, she opines that the reality is harsher and grimmer for those who do not have a strong support system.
“There are days when people living with albinism will walk on the streets only to go home and cry because of the discrimination and stigmatisation. (This is because) Someone somewhere has used derogatory words and we are all humans. Despite the thick skin and walls we put up, there are days you break down. There are those of us who came from amazing and loving families but there are PWAs whose parents won’t even bring them out. They are hidden in the shadows, they are not educated and learned. This is the reality of many albinos.”
She elaborates further on how hard it is not to navigate the murky waters of the dating pool. Finding love is hard enough for the dark-skinned person, but the odds are stacked even higher for an albino. To find love is a herculean task and when an albino does find it, he/she has to deal with families and friends of their partners.
Families often reject marriages to albinos out of fear of the birth of another albino child, snide and hurtful comments can bring down self-esteem, among many other factors.
“Imagine having a partner who is ashamed of you or would not introduce you to their friends or family because of what they will say or their acceptance. The family can say no to marriage even when you find someone that loves you. It is important to find someone who chooses you as you have chosen them.”
Onome is married to her heartthrob, Lolu, with whom she shares a son while Teejay who is single, says he has standards so high that he knows what he wants and never settles for less because he has been shown genuine love by his family. To build this self-love and confidence among albinos, Teejay and Onome urge parents to love their albino children because the love starts from home.
They both agree,
“If the foundation is faulty, it will be hard for that PWA to navigate the discrimination from society. Parents are the first point of contact and you need to show them that love because the streets are wild.”
What Needs To Be Done
People with albinism often have trouble with their eyesight. They may wear glasses or contact lenses to help correct problems like nearsightedness, farsightedness, or astigmatism. Others might need eye surgery. People with light skin are also particularly at risk of skin cancer. So it is important for people with albinism to use sunscreen with a high SPF factor at all times.
Onome commends the Lagos state government for making an effort to include PWAs in some of its programs.
“The government can do better with sensitisation in public schools and general hospitals. If a woman gives birth to an albino child, for instance, there should be an education on the steps to take, myths to avoid, and the facts. The government can try to subsidise sunscreens and also eye care. Most of us are shortsighted and glasses are really expensive. Skin test once in a while would not also be bad.”
Teejay is, however, not waiting around for the government to do anything for PWA because according to him, the system is “rotten” and what he can do is constantly use his voice to sensitise people about what it means to be an albino. As a matter of fact, he wants the government to stop classifying albinism as a disability.
In the meantime, all they can do is to keep excelling and living their best lives against all odds stacked against them.