It’s Cleft Awareness Week (6-14 May), and I must confess that I’ve been a shamefully idle activist lately. I’ve been far too preoccupied with trying to find ways to stream episodes of the US TV series The Handmaid’s Tale (based on the dystopian novel by Margaret Atwood) than working to raise awareness about cleft lip and palate.
Here in the UK, Cleft Awareness Week is organised primarily by the Cleft Lip and Palate Association (CLAPA), a national charity supporting people and families affected by cleft lip and palate, and it does a fabulous job.
Sweden also has a network of local cleft lip and palate associations and when I was little my parents were initially enthusiastic participants, dragging me to family picnics so that I could meet other cleft children. I hated every minute of those meetings, for the last thing I wanted was to be reminded of my cleft.
By the way, picnics of any kind have never held much appeal to me since.
Eventually, my parents’ involvement fizzled out, though they (and I) remained members of the association until I was well into my twenties.
Growing up in Sweden meant that each winter my family drove north on a week-long skiing vacation, and it was on one of those holidays that I met Maria.
I was about nine years old, and Maria was a twenty-something children’s ski instructor and childminder. She had lovely blue eyes, dark blond hair with a hint of red and a gorgeous smile. And she was born with a cleft lip and palate just like me. I worshipped her.
For the first time in my life, I began to consider the possibility that having a cleft needn’t be a personal disaster. Looking at Maria, I realised that cleft people were beautiful too.
When I was 17, I learned that my local cleft lip and palate association was planning to set up a youth support group for teenagers and for the first time in my life, the idea of meeting and sharing experiences with other ‘clefties’ appealed. I guess I was ready for it.
So, emboldened by my parents’ encouragement and support, I phoned the group organiser.
“Do you have a cleft?” he asked as soon as I had finished introducing myself.
“Well, yes of course,” I answered perplexed. Why else would I be calling to say I wanted to join the group?
“You don’t sound like you have a cleft,” he replied sceptically.
What he meant was that my voice wasn’t as nasal as cleft affected people’s voices tend to be.
I was thrown by his comment and, I think, a little offended. Finally, after so many years, I was ready to engage with other ‘clefties’ only to have my cleft-credentials questioned by a fellow ‘cleftie’.
I never joined the youth group.
Aside from supporting parents of cleft affected children, CLAPA brings together young ‘clefties’ through a wide range of events aimed at building friendship and community. Being around other people with cleft is important for many reasons, not least because it helps to normalise the condition. After all, one in 700 babies is born with cleft around the world, making it one of the most common birth ‘defects’ worldwide.
In hindsight, I wish I had been part of such a community growing up, as being the only ‘cleftie’ in school, at home and in the neighbourhood, could be terribly lonely at times. I longed for someone to relate to, someone who could truly understand what I was going through because they had been through the same.
Not until recently did I genuinely feel that sense of community and shared experience with other cleft affected people. On my Journey of Smiles visit to Guatemala last year I had the pleasure and privilege of meeting and connecting with a fellow ‘cleftie’ in her twenties. Listening to her tell her story and being able to share some of my story without fear of being patronised or pitied, I finally understood that this was the connection that had been missing from my life for so long.
Surrounded by a room full of gorgeous cleft children in a Guatemalan clinic, a profound sense of realisation hit me: at long last, I had come home to my Self.