Albinism: An Exploration into My Humanity.

I am not sure if I should be writing this article as a doctor or as a human being — but I suspect you will want me to do both, so that will be the framework with which I approach this ambitious task. However, there is a third elephant in the room, a reddish looking mammal with brown ivory tusks slouched at the corner hoping to evade attention — but everybody keeps staring, you keep staring. That question of “Am I writing this essay as a person with albinism?”. The simple answer to the question is I don’t know, and frankly I do not care to know. But you see, this is where it gets tricky, because when you embark on an exploration into my feigned indifference, you realize that I cannot pretend not to be a doctor furnished with medical knowledge and I cannot to pretend to write this article without confronting painful memories from my childhood — persistent bullying because of how different I looked, ostracism by kids my age and the fallout from those traumas that still trail me into my adulthood. So why does the question exist, and why do I claim not to care? There is both a scientific and societal answer to that. Let’s deal with the scientific answer first.

Albinism is a genetically inherited — big emphasis on the word inherited which I will come back to later — condition that affects people regardless of race or gender. The condition results in a significant deficit in melanin production in the body — melanin is a pigment found in humans (and animals) that accounts for the dark color of skin and hair. So with albinism, there is a partial or complete lack of melanin pigment in the skin, hair and/or eyes. The condition is passed on to people mostly in an autosomal recessive pattern. What this means is that, in order for a person to have albinism, both parents must carry the gene even though they (parents) might be darker skinned and without albinism. But more interestingly, even when both parents have this gene, using mendelian permutations, there is only a 25% chance that the gene from both parents will be transferred to a particular child resulting in albinism — almost like a roll-of-the-dice situation. The import of this is two fold; one is that a person with albinism might have siblings from the same parents that do not have the condition (because if there is a 25% chance that carriers of the gene will have a child with albinism, there is also a 75% child that the same particular child will not have albinism), and the other is that it highlights the sheer stroke of luck in which these persons had no role or choice to be born with this condition — remember the word “inherited”.

Image credit: images gotten from twitter account @Unalbinism

Now what about the societal answer to the question? Society has a more amorphous, rudderless basis for behaviors, norms and stratification that has no bearings to science. Broadly speaking, albinism revolves around four cardinal issues; pale colored skin; pale colored hair; visual impairments; and the susceptibilities resulting from the first three issues — like sunburn and skin cancers. Other than these four issues, persons with albinism are just as normal as normal can be, human beings with feelings, with dreams, with normal intellect. Now, the doctor and scientist in me, recognizes that the story doesn’t stop there. It goes a little further into what molecular biologists refer to as ‘genetic polymorphism’, which basically means that a condition can be expressed in varying degrees — phenotypic variations. But all of that is beyond the scope of this essay. Here is the point, my skin color is more reddish than pale, my hair color is more dark brown than pale and I do not have any visual impairment. So there will be a segment of society that will argue that I cannot be categorized as a person living with albinism, and to position myself as one will be akin to Rachael Dolezal’s claim to black womanhood.

And how about, why I claim not to care? One because I honestly don’t care about labels, the only thing I want to be categorized as is a human being. And secondly, why should I care when the bullies didn’t care? It did not matter to the kids I went to highschool with who sometimes ostracized me and blamed me for things I have no memory of committing, it did not matter to Tomiwa and Pelumi who told their dad that I broke Pelumi’s teeth in primary four but Pelumi was in primary two and I had not seen him the entire day in school until they both showed up to my parent’s front door to report my mysterious and miraculous violence, it didn’t matter to the passersby on the streets of Lagos and Odogbolu who always shouted ‘afin afin’, it did not matter to O*, my high school mate who once made a joke in the middle of the dinning hall in FGC Kwali during a social event in front of the whole school that, if I was ever in a room and the power went off, I was so red and shiny that I would illuminate the whole place and the whole hall bursted into rancorous laughter, while I stormed out of the hall in shame. That night O* was crowned as the funniest guy in school. It did not matter to Lekan in Primary five who said if I ate salt my eyes would fall off. Should I go on? Ignorance is one thing, but ignorance is not always cured by more information. Bullying and stigma are very intricate elements of human society and it stretches far beyond albinism — visible both online and offline.

“The belief in a supernatural source of evil is not necessary. Men alone are quite capable of every wickedness.” — Joseph Conrad

Now if you think my personal recollections of some of my childhood experiences at the hands of those helplessly ignorant and mean kids were like bad headaches, well here is an even bigger migraine to ponder upon — in 2008 I first learnt about the violent crimes against persons with albinism happening in countries like Tanzania where there is this myth that the body parts of persons with albinism will bring wealth and good fortune. As you can imagine, kids will be most vulnerable to such killings and maiming. Some of these killings and crimes have sometimes been cracked down by the law enforcement due to the growing international concerns these stories generated, but these things continue to happen — just as recent as February 3 2021, a 26 year old man living with albinism was murdered in Mangochi, Malawi for body parts.

Image credit: images gotten from twitter account @Unalbinism

How can you help or get involved?

  • Self interrogation: we all have our internal prejudice. Sometimes we know what they are implicitly because they are quite glaring or maybe other people have called them out, but other times they are so subtle and so subconsciously perpetrated that they go unnoticed. What we should do as evolving beings is to always self reflect and interrogate those prejudices and hopefully come out the other side with education and enlightenment.
  • Education and Advocacy: The world is moving away from using the term albino — which is often used in a derogatory way — to saying ‘a person with albinism’. It might take a while to get used to this change, but we can all try to make the constant effort. International Albinism Awareness Day is observed on 13 June to tackle discrimination against persons living with albinism. You can either join by using the prescribed hashtags on your social media handle to propagate awareness.
  • Stand up for Someone’s right today: All around us, people’s rights are being trampled upon. Bullying extends far beyond persons living with albinism in our society, when you see it, when you can, stand up for someone’s right. Basic human rights should be basic, detached from moral, religious, racial, gender or ethnic sentiments.

Dwelling at the intersection of everything humane. Doctor & Writer.