When I was little, 1st of May was the day I’d climb onto my stepfather’s shoulders as he marched through the streets of Stockholm in support of workers’ rights. Perhaps that’s how I acquired my activist streak, although I’m ashamed to admit I’m a little lazy these days and prefer to conduct any activist activities from the comfort of my home.
The problem with being an armchair activist, however, as I detailed in a blog last year, is that for the lesser disciplined, like myself, the temptations of Netflix sometimes proves too much. That’s why this year too, I nearly missed Cleft Lip and Palate Awareness Week (5-13 May).
But although I’m a few days late to the party, I want to do my bit for raising awareness about cleft. As a proud cleftie, I want to begin by stating loudly and clearly, that being born with a cleft lip and/or palate is NO TRAGEDY. There’s no need to feel sorry for me or the millions of clefties out there in the world. The tiny scars on our upper lips aside, we are no different from the rest of you.
Why do we need a special awareness week for people born with cleft, you might ask? Because ignorance and prejudice around cleft lip and palate are still more widespread than they ought to be. Because we live in an appearance-obsessed society where the definition of what is normal and beautiful is exceedingly narrow. Because, as a recent study by Changing Faces reveals, two-thirds of people hold a negative bias to those with a visible difference, such as a scar.
Here are a few useful facts about cleft, courtesy of the Cleft Lip and Palate Association:
- A cleft may mean a baby looks different, but it doesn’t hurt.
- Cleft is a physical issue which, by itself, has no effect on a baby’s cognitive development. It’s not linked with learning difficulties.
- It’s not a disability, though some children need extra help with their speech and hearing as they grow up.
- A cleft can usually be closed in one or two surgeries before a child’s first birthday, but the treatment pathway is 20 years long. It’s not a quick fix.
- Just like every child, every cleft is unique, and every family will face unique challenges.
- Hospital appointments and operations aren’t fun for anyone, but for many people, the most difficult part of being born with a cleft is dealing with public ignorance and the reactions of others.
That last point is particularly important to highlight, I believe, and resonates strongly with my own experience of having been born with a cleft. As a young girl, it wasn’t the cleft itself that was the biggest issue for me, but the way in which adults and children around me reacted to my cleft. I didn’t need anyone’s pity, all I wanted was to be treated as the full human being I was and not be defined by my cleft. However well-meaning, people’s pity left me feeling patronised, humiliated and dehumanised. And absolutely furious. It was as if these people didn’t really see me, the person beyond the cleft.
Surgery to close a cleft is necessary for the sake of long-term health and well-being, of course, but that doesn’t mean that a baby born with a cleft isn’t just as whole and perfect as any baby that comes into the world.
Admittedly I’m biased, but in my world, there’s nothing more beautiful and life-affirming than a cleft baby’s broad smile.