I wholly underestimated just how much of a ‘thing’ my albinism is to people.
That was until my brother dropped the biggest bombshell of our 38-year relationship on me.
Telling him about this article, with stunning ambivalence, he said, ‘Mate, whenever my friends meet you for the first time, days later, the one question I’m asked more than any other is, “Why didn’t you tell me your brother is an albino?”’
I took a sharp breath, incredulous, wondering why anyone would expect my brother to give them a PowerPoint briefing ahead of my arrival.
He then unveiled his stock response to these people, ‘He’s always been an albino.
‘I didn’t wake-up one day and he was suddenly really white. I don’t think about it. He doesn’t think about it. I don’t understand what you want from me.’
And it’s true, I don’t think about it. But what is clear is that other people do.
Recently, a drunk dude stumbled over to me in a bar and spluttered, ‘Mate, if I were you, I’d milk my albinism for all it’s worth.’
The guy, who approached me with uninhibited zeal, was called Ben*. I hardly know him, but we share mutual friends.
Apparently, said friends routinely tell Ben, who is a digital specialist, about my video content. So, following prolonged nudging, he finally conceded and visited my YouTube channel.
As he recounted which video he liked most, his single piece of advice was, ‘TALK ABOUT YOUR ALBINISM. Why don’t you milk it? Do you know how many other albinos, who aren’t as confident as you, would look up to you?’
As he said this, scanning the room for details of where his next Corona was coming from, I had one prevailing thought, and that was, ‘You’re absolutely right.’
Playing ‘the albino card’ would almost certainly build my presence further, but there’s one problem: I don’t care.
To elaborate, I mean I have no time for the most glaring cultural contradiction of all: labels.
Often, in society, we hear trite platitudes like ‘we’re all the same’, but I doubt most people truly believe this, because if they did, using albinism as a gateway to exposure would never be a consideration.
Now, would people with albinism be inspired if I spoke about albinism more?
Probably, but my theory is that it’s even more inspiring for me to do cool things with utter disregard for whatever ‘thing’ it is that society sees as a ‘thing’.
I released my debut film last year and amid the responses commenting on the film, one woman wrote, ‘is he an albino?’
Understand, her question didn’t annoy or hurt me. If anything, it puzzled me.
It was just like the TV producer I recently met. He was casting for a big new show and invited me to a meeting.
Poor guy, I could feel him squirm as he negotiated his words carefully, settling for, ‘So, um, your albinism, how does that, um… does it attract any remarks and so on?’
‘Well, growing-up, I was called names like Casper and The Milky Bar Kid, but nothing damaging,’ I said. ‘Occasionally, as an adult, people will ask me about it, but mostly, my albinism isn’t a life feature.’
And that’s the plain truth, I think about my albinism as often as I think about soil: rarely.
With the exception of laughable eyesight, which I’ve long since made peace with and adjusted to, it’s not a label I feel defined by.
Interestingly, with age, my albinism is something I’m even less mindful of, perhaps because fewer people are shouting ‘ALBINO!’ at me from across the street.
Being on the receiving end of this has never been my favourite thing, I mean, let’s be honest, ‘A-L-B-I-N-O’ isn’t the softest of words, it’s pretty sharp – unlike ‘donut’ or ‘cupcake’: smoother words the ear is naturally designed to enjoy.
This happened a lot in my teens, often in my 20s, and now I’m in my 30s, it hardly ever happens.
Why doesn’t it happen anymore? Maybe society is more aware of what’s inappropriate.
Maybe I look big enough to make the shouters think twice.
Or, perhaps my brother has already given all living humans the PowerPoint briefing that his friends expect.
Labels is an exclusive series that hears from individuals who have been labelled – whether that be by society, a job title, or a diagnosis. Throughout the project, writers will share how having these words ascribed to them shaped their identity — positively or negatively — and what the label means to them.
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