I have never thought of myself as disabled on account of my cleft, although a middle school teacher once referred to my cleft as an example of a disability, in front of my classmates no less. Her intentions were probably benign, but I felt grossly humiliated.
Indirectly, however, my cleft has contributed to lasting hearing loss on both ears – a consequence of all too many ear infections, which often befall children born with cleft. And my hearing loss does make me feel disabled at times.
When I was four years old my parents finally had had enough of me constantly saying ‘what?’ every time they spoke to me. Perhaps I wasn’t just being rude, they realised; what if there was something wrong with my hearing after all? A visit to the the ear specialist, followed by a hearing test, soon confirmed a case of chronic glue ear in both ears.
I subsequently had tiny ventilation tubes, aka grommets, inserted under general anaesthesia to drain the fluid from my ears.
Grommets, however, increased the risk of ear infections, my parents were told. Therefore, I had to suffer the humiliation of wearing a frilly shower cap to protect my cotton-wool-stuffed ears when I went swimming or merely had a bath.
Thankfully I was excused from the school’s compulsory swimming lessons. Instead, my stepfather taught me to swim, but that’s a whole other story…
By the time I was fifteen, my eardrums had become so scarred from the countless number of surgical interventions and ear infections that grommets no longer helped.
Even with grommets, however, I had to sit up front in the classroom to be able to follow the lessons fully. Perhaps it was then I learned to lip read, a strategy I still rely on as a backup to my sub-par hearing.
As a teenager there were times when I felt isolated and slow-witted because I couldn’t hear what teachers or friends were saying, especially if we were sitting around a table in a noisy school canteen.
Some years later I would go on to have a disastrous first date with a lovely young man, because I was too embarrassed to admit that I couldn’t hear a word of what he was saying, as we sipped gin gimlet in a busy Manhattan bar.
Instead of being upfront about my invisible disability, I sat there smiling and nodding with regular intervals, completely clueless as to the topic of our conversation.
Fed up with feeling like an idiot because of my shoddy hearing, I eventually paid an exorbitant amount of money for a nifty, high-tech, and above all discrete, hearing aid.
Now I was able to hear the birds singing outside my bedroom window and when strolling through my favourite London park I could hear the soothing sound of leaves rustling in the wind.
But along with all these amazing, precious sounds came others that were less welcome.
For starters, I had no idea that our fridge was so noisy! And the neighbours upstairs…it turned out they were not as quiet and peaceful as I’d thought.
‘Keep wearing the hearing aid and you’ll grow used to all the sounds,’ I was told by the friendly audiology technician. And as the good girl I was brought up to be, I followed these instructions dutifully.
Only, I never could get used to the level of noise that surrounded me at almost every moment of the day. I found it intrusive, irritating and distracting.
Worst of all, I noticed that with all the noise around me, I wasn’t able to hear my own thoughts anymore. I felt like I was drowning in sounds that didn’t belong to me.