‘Living with albinism tough in Nigeria, we suffer social discrimination, mockery of our eyesight’


Olouwatobiloba Jaiyeola

Persons living with albinism in Nigeria have always had to contend with some health-related challenges due to the genetic condition they have. But, their toughest challenge is often not the health issues they have to deal with but the different forms of social discrimination and stigmatisation from a section of the population. Donald Tampi and Lawrence Mary, two persons living with albinism, in this report, share their experiences of battling against discrimination, stereotypes and psychological issues. OLUWATOBILOBA JAIYEOLA reports:

Donald Tampi, 32, didn’t always carry the consciousness of his albinism around. His twin brother looked like just him, with skin that didn’t like the sun and eyes that saw men as trees from distances.

He was a regular kid who played, ran, and laughed like others until he clocked 10 years of age.

From that age, he started experiencing the unusual stares from his primary school classmates, the jokes that ended with how his skin looked, and the subtle name callings.

He then realised that the body he inhabited had become target practice for mockery.

For him, primary school was a shower of ridicule, while secondary school was the downpour.

He said, “In secondary school, I was discriminated against by my peers. It was not funny at all”

He said that his classmates would sometimes pretend to be blind when they walked past him and taunt him with piercing laughter from a distance.

He recalled that he sunk into himself, noting that his face was a blank piece of paper every school day.

“They made fun of me because of my vision/eyes. I always had to move closer to the board, people laughed at me and talked bad about me, and they never said anything good about me.

“This discrimination made me feel very bad. They usually don’t mock me to my face but at my back. They used to say I could not see,” Tampi said.

According to experts, albinism is a genetic disorder that causes a decrease in the production of a pigment called melanin in the skin, hair, and eyes, resulting in light colour or no colour.

Possible eye conditions linked to albinism include poor eyesight – either short-sightedness or long-sightedness, and low vision, experts say.

Sharing the story of his school days with PUNCH HealthWise, Tampi noted that the immense loneliness he experienced affected his performance in school.

Donald Tampi and Lawrence Mary
Donald Tampi and Lawrence Mary

He stated that with the Nigerian schooling system not designed for people with differences, persons with albinism are often at a disadvantage in schools.

He said, “I felt very terrible. I was being neglected and discriminated against by my peers and I felt different as I didn’t look like others which made going to school tough.

“I always move to the front and sit on the floor to write but when the time is up, I have to stop even when I have not finished.

“Most of the time when I try to borrow notes in primary school, no one would be willing to give them, so it affected my academic performance, I performed low.

“However, in secondary school, I somehow managed myself and tried my best to perform well. I realised I had to get on with my life even when the system is against me.

“This, however, affected me psychologically because I always felt very lonely.

“At the time, I felt we were all humans created by God and didn’t deserve to be discriminated against. So, I used to wonder why people are doing it.

“But, now that I am grown, I don’t feel that way anymore. Also, I have learnt a lot from the Albino foundation, especially how to deal with those social discriminations.

“The Foundation has helped me and changed my perspective towards life.”

According to a recent report released by the Albino Foundation of Nigeria, the majority of persons with albinism in the country suffer a high level of discrimination.

The report noted that while relatively few cases of attacks against persons with albinism have been reported, a study in 2014 disclosed that 41 per cent of persons with albinism had mental health issues.

Also sharing her experience with our correspondent, Lawrence Mary, now 30, recalled that she became aware of her albinism while she was in primary school due to her experience in class and how she was treated.

She said, “It was when I was in primary school that I got to understand that I was different from other people.

“I noticed in class that I couldn’t see from far whenever I sat at the back. Then, I was so little and shy to even voice out my problems. It was affecting my performance in school, yet I had no one to talk to.

“I couldn’t tell anyone how I was feeling so the teachers at a point had to call my elder sister to come to the office and informed her that they want to see my parents, but I noticed that my dad knew everything about it, so he was the one that came down to the school and told them to be writing boldly on the board. I then changed my sitting position to the front.”

She said things became easier for her in class afterward, adding that her academics improved.

She said, “I remember that every term. I came first in class because everything was easier for me. After all, I could see clearly.

“When I was not seeing clearly instead of me to even voice out, I would not voice out, I would just sit where I am and I will just be writing nonsense.”

According to the Albino Foundation of Nigeria, only about 12 attacks against people with albinism have been reported in the nation. Yet, bullying and name-calling are common for children with albinism.

Mary said, “I mostly felt stigma in secondary school. This was regarding the issue of my eyes and not being able to see clearly. They normally call me oyinbo pepper.

“But in my class, my friends were people that lived around my area so they know how my parents and family treat me so they made it easy for me and there was no bullying.

“Although I had issues borrowing notes from some people as I cannot really write fast, and even if I’m sitting in front of the board I’m not able to write fast, and sometimes I won’t even see the board even at the front because the writing will be too tiny so I have to borrow note.

“While wanting to borrow notes, some people will mock me while some others would not even give me their notes.

I used to have a friend then that help me to copy the notes. I was glad for his help.”

She added, “My younger sister is also living with albinism and my mum’s cousins have albinism. My parents stood for me, and they made me have high self-esteem right from childhood.

“My mum would always tell me that there is no difference between me and them anytime she hears someone trying to mock me.

“I remember there was one of my neighbours, the lady was talking to me and she started shouting at me that why am I looking at her that way and accused me of eyeing her, so my mum came out and spoke to the lady that no, you don’t talk to her that way because that’s how her eyes are.”

Mary said was not psychologically affected by stigma because of the kind of family members and close network she had.

Persons living with albinism may suffer psychologically due to stigma

Speaking with PUNCH HealthWise, a Lagos-based Psychotherapist, Dedoyin Ajayi, said she has had to treat persons with albinism in her practice who were psychologically affected by stigma.

She said, “I have treated a very considerable number. Sometimes I would have a person living with albinism as a patient maybe once in six months and that’s a very considerable number to have consistently. So it is an issue”

Ajayi stated that persons with albinism are susceptible to different forms of mental health issues and relational challenges.

She said this ranges from being socially sequestered to having high levels of low self-esteem, to coming down with depression due to the inherent feeling of inadequacy.

“This is because persons with albinism tend to feel like they’re not enough. They sometimes also have to contend with anxiety and sometimes, even paranoia,” Ajayi said.

Ajayi said, “Mental health issues are anything that disrupts the functional processing of the mind or the emotion.

“Persons will albinism has lots of relational challenges such as people not seeing them beyond their skin colour. Sometimes they may have people around them like friends and family who are ashamed of them, siblings cropping their picture away because they’re too white, or them having issues with their partners.

“So most times, they have to work extra hard to impress people. Many persons will albinism even sometimes feel the responsibility to start activism and yet some of them don’t even believe in the activism but get into it to show that they are confident in their skin.

“This can get pretty overwhelming for them, having to live a life that constantly reminds them of their skin colour,” she said.

Need for change on albinism

Ajayi, an expert in emotional health has urged every member of society to be more humane in their relations with persons with albinism.

She said when relating with albinos, people should stop making conversations regarding their skin colour because it can be mentally exhausting for them.

“When it comes to albinism, people have to be more sensitive and humane. Our people have to understand the fact that humans are humans regardless of what their body looks like. It is not good to treat people differently because they are short, tall, or the particular body composition they have is not what yours look like.

“Persons with albinism don’t have melanin and that does not make them less human. When you see them, don’t focus conversations around their skin except they bring it up themselves because it is pretty much mentally draining for them to keep answering the same questions over and over again.

“Don’t date them out of pity and don’t be their friend out of pretence.

“Love them for who they are and get to know them on a deeper level than just their skin condition and if you cannot deal with how they look, do not go near them. It is not good to pretend you care when you do not. Just be human around them the way you’re human around other people,” the psychotherapist stressed.

Also speaking on discrimination against persons with albinism, the Founder and Chief Executive Officer of The Albino Foundation, Mr. Jake Epelle said, “I have been screaming to high heavens about the fact that even within the person with disability community; they are discriminating against persons with albinism.

Mr. Epelle said that in Enugu State when elections are being conducted for persons with disability, there were moves to sideline persons with albinism.

He said, “Now it is obvious, it is coming plainly, not all but some disgruntled members of the disability community are just running an ungodly campaign that we are not part of the disability community.”

Reporting cases of discrimination against persons with albinism

According to Mr. Epelle, the national commission for persons with disability has secured a designated line for reporting cases of stigmatisation. The dedicated line, he said, was approved by the inspector general of police.

“Now every police headquarters in the states have a desk officer designated for persons with disability. That is a good development,” he said.

Mr. Epelle stated further, “We also have a copy of the albinism handbook that trains our coordinators on the three p’s which are human rights promotion, protection, and prosecution.”

How the foundation is fighting stigma

The Albino Foundation president said, “Taking into consideration the huge number of persons with albinism, I won’t claim that we have done much because there is a whole lot to be done.

“But one thing nobody can take from us is the fact that we have brought the issue of albinism to the front burner. We have thrown more light on the advocacy component.

“Today everyone knows a bit of albinism and its challenges. we have developed a policy for albinism and the whole world knows that there is a national policy for albinism in Nigeria. We are the first in the world to do a policy.

“A lot more has to be done and it would be done by me and other younger ones that would take over from me.”

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