Being profoundly deaf is not a ‘joy’ for us all
As Rose Ayling-Ellis raises awareness of deafness, Jeremy Freeman says her experience is not necessarily typical
When Rose Ayling-Ellis and Giovanni Pernice danced in total silence for 16 seconds on last Saturday’s Strictly Come Dancing, it caused an enormous emotional reaction from the public. On social media, the word “sobbing” trended, with many people posting how moved they were by this silent routine.
Rose, who is profoundly deaf, had earlier told the audience that there would be “a moment in the dance for the deaf community”. This was that moment: a powerful, symbolic gesture, supposedly giving the public an insight into what it is like to be deaf. And when the dance ended, Rose said: “Being deaf is nothing wrong; it’s such a joy to be deaf.” A sentiment she echoed in an interview in yesterday’s Telegraph.
So, as someone who was also born profoundly deaf, why has it left me feeling enraged and even embarrassed? The truth is that, for me, being deaf is not like a few moments of beautifully choreographed silence. For me, there is no joy. It has been a horrible struggle for every single day of my 48 years.
I’ve lost count of the times when I’ve witnessed alarm on a person’s face because I’ve misunderstood what they’ve said, or the times people have turned and walked away once they realised I was deaf. I’ve been humiliated a hundred times over in all kinds of situations. Those who know me may not see it – I hide it well because I want to be like you, I want to pretend everything is OK.
When I was born in 1973, it took eight months for my deafness to be diagnosed. It was my late grandmother who first noticed I didn’t react like other babies to the clash of saucepan lids.
My diagnosis came as a shock, and it was only when I had two deaf children of my own and genetic tests became available that we discovered the cause to be a mutation in the Connexin-26 “deaf gene”, something my deaf wife and children also carry.
My deafness was viewed by my parents as a disability; something to overcome and something which would make life more difficult. To some this might sound harsh, but they wanted me to be able to survive and thrive in the hearing world, not just the deaf one. They took the decision ision that I wouldn’t learn sign language guage or attend a deaf school.
Instead I learnt to cope pe by developing excellent lip- p-reading skills; I’m now one of the he world’s few expert witness lipreaders, regularly hired d by the media and lawyers to lip-read what was said in a video or at a major political or sporting event.
But the fact remains that without my hearing aids, which I started wearing at 15 months, I can’t hear a thing. A 747 could take off outside the room, and I’d barely notice. With the aids I can hear “noise”, which can be difficult to process, and I struggle with high-frequency sounds. I didn’t say my first word – “apple” – until I was two-and-a-half and I spent my whole childhood having intensive inten and costly speech therapy.
Many people don’t think t of deafness as a severe disability because be it is an invisible one. But if you’re you profoundly deaf, distinguishing isolated voices in a crowd is impossible. imp Phone conversations are an ordeal. You can’t hear he the doorbell or the fire alarm. People often treat you as if you’re you stupid, and aren’t always a kind or patient patien if, like me, your speech is sometimes som unclear because bec you can’t hea hear your own voice vo or pronounce certain sounds. Sometimes they patronise you. Lots of girls aren’t interested in you. And don’t even get me started on how, thanks to masks, the pandemic has been particularly unkind to deaf people, making communication impossible.
Growing up, I had lots of friends. But girls never wanted to take things further with me. Hand on heart, deep down, I think they didn’t want to be romantically involved with a deaf guy. I met my wife, Ravit, nearly 24 years ago, through mutual hearing friends.
We always hoped our children would be hearing and were shocked when both children were born deaf, too – no one had suspected our lack of hearing was genetic: our respective parents thought Ravit’s deafness was the result of a childhood accident and mine of a pregnancy infection.
Despite being successful in business, I’ve found being accepted in the world of work challenging and I can’t help feeling that 99 per cent of my network don’t want to get close to me or Ravit because of our deafness. Maybe it’s my personality, maybe I’m tactless, maybe I’m too honest, too introverted, too complicated, too loud, too quiet, too boring … but these traits are closely interwoven and interlinked with my deafness.
Perhaps my biggest mistake was not being part of the deaf community and I do have a tinge of regret about not learning BSL too, so I could also communicate with other deaf people.
Then again, no, I want to be part of the “mainstream” world, I want to be “equal” to everyone, to enjoy my life to the full and grow my business. I love 90 per cent of my life, it’s just that 10 per cent gets me down.
I look at my children, and I envy them, because despite also being born deaf, they were lucky enough to be the recipients of cochlear implants at an early age, a technology that didn’t exist when I was born.
A militant minority of deaf people would condemn me for that. They campaign against cochlear implants, calling it “child abuse”, an erasure of deaf identity. They would prefer their children to live forever in silence.
For my children, having cochlear implants means their deafness has not held them back. They both have a large circle of friends. Chantelle, 18, is in her first year at university, away from home studying law. My son, Eytan, 14, is thriving at school and full of confidence.
Yet I know that the journey going forward won’t always be easy – after all, their cochlear implants are visible – and I wonder if unconscious bias will affect their chances in the world of work and romance.
When I posted these sentiments on social media, I worried about a backlash. I didn’t want to offend anyone, or be negative about Rose. However, I was overwhelmed to receive many positive comments and reactions from friends and strangers.
And Rose, of course, has been awesome. She is a credit, as well as an inspiration, to those who are deaf. It’s just that by her saying it’s great to be deaf, I can’t help feeling my personal experience of being deaf has been trivialised.
When well-meaning people message me to say that because of Rose they understand my deafness more, if I’m honest, nothing could be further from the truth. We’re all different, we all have varying levels of hearing loss, communication methods and coping strategies.
Life would be so much easier if I could hear. It’s an uncomfortable truth but, for me, it will never be a joy to be deaf.
‘A militant minority of deaf people would condemn me for giving my children cochlear implants’