I was eleven years old when my teacher called me ‘disabled’ in front of the class, during what was intended as a lesson in tolerance and inclusion. I still remember how the teacher’s words burned as if she was branding me with a red-hot iron. The initial wave of shame soon gave way to anger and resentment. Disabled? Me? In what way was I disabled?
Being born with a cleft lip and palate does not mean you’re disabled, and yet that is an assumption people, such as that teacher, sometimes make. In the past, cleft was thought to be linked to lower intelligence and learning disabilities, a claim that has since been debunked. But prejudices die hard.
My teacher’s labelling of me as ‘disabled’ was one of the contributing factors behind my silent and unwavering determination to prove myself to the world as a bright, successful person in the years that followed. I put all my energy into being one of the top students at school and university, working my way towards a PhD that would serve as final proof of my intelligence and human worth.
Only when I had children of my own did I realise I’d been wrong all along; my worth as a human being was in no way conditional upon my abilities and achievements, and today I am adamant that no one should ever feel they have to prove their worth as I did.
And yet, ours is a society that judges people based on their achievements, riches and beauty, and discriminates against people with disabilities, facial ‘disfigurement’ or anything that sets them apart from the majority.
In Britain, abortion is allowed up to birth for babies with disabilities, which has been interpreted to include cleft lip and palate as well as club foot, two conditions that are non-fatal and easily rectified. Shockingly, data shows that between 2011 and 2018, there was a 150% increase in abortions for babies diagnosed with cleft lip and palate.
I’m not anti-abortion per se, but I am wholly supportive of a Bill recently presented in parliament, which seeks to change the law to clarify that cleft lip and palate and clubfoot are not grounds for abortion. As someone born with a cleft, I can’t see a single reason why my life wouldn’t be just as worthwhile as that of someone not born with my condition.
When I was pregnant with my first child, I knew there was a chance my baby might have a cleft. If so, who better to raise that child than me? But neither of my children had clefts and, as crazy as it sounds, a part of me has always longed for a baby with cleft, a child that looks like me, I suppose.
Never pity a child born with cleft for there’s no need to. The only thing that will hold that child back is people’s prejudices, not their cleft.
Aborting less than perfect babies is not the answer – dismantling prejudices is. Some years ago, I was invited to share my experience of cleft care to a room full of doctors, speech and language therapists and counsellors at the same Swedish hospital where I was born. Present was a woman whose ten-year-old daughter had Crouzon’s syndrome, a condition that affects the growth and appearance of the head and face. When she said that her daughter had declined to have cosmetic surgery, one of the counsellors spoke up,
‘But what if she’s bullied, shouldn’t you ensure that your daughter benefits from every medical procedure available to normalise her appearance?’
I was dumbfounded by the counsellor’s comments, but the mother answered calmly, that it was not her daughter that needed fixing to fit in with society, it’s society that needed changing to accommodate and include people like her daughter.
Aborting less than perfect babies, and subjecting unwilling patients to a seemingly endless series of operations to ‘normalise’ their appearance should never be the way we respond to prejudice and intolerance.
As the British comedian Francesca Martinez writes in her book What The **** Is Normal?!, “…any ‘suffering’ I’ve endured hasn’t come from being wobbly [reference to her cerebral palsy, my note] but from people not knowing how to handle difference. So, instead of focusing on eradicating disability, maybe we should focus on creating a world that embraces it as a natural part of life.”