August marked ten years since I underwent my first stapedectomy operation – the first of two – to replace my inner ear bones with prosthetics and, in doing so, ‘restore’ the hearing I began to lose at the age of eight – which is all to say, I’ve now been ‘hearing’(ish) for as long as I was ‘deaf’.
Friends I knew ten years ago may remember how emotional that time was for me: hearing a man’s voice behind me and realising that, in the years since I’d last heard him speak, my brother’s voice had broken; going around the house re-acquainting myself with environmental noises (running water, kitchen appliances, floorboards) which I’d once taken for granted but which I had, at some point, gradually and imperceptibly lost; sitting in a room at the Brittle Bone Society’s annual conference in utter amazement that I could hear Dom Hyams drumming *in a different room* i.e. I had developed a superpower and could now *hear through walls.*
But thinking back on the past decade, that time is also tinged with sadness. Sadness that at the age of 18, despite learning BSL from a wonderful Deaf teacher, I still believed that my deafness was a flaw which needed to be fixed. Sadness that while I had many brilliant (and eternally patient) school friends, two of whom even learned BSL to help me communicate, at the age of 18 I didn’t have a single deaf friend. Sadness that despite late nights learning about the disability rights movement online, I believed the social model didn’t apply to deafness because my experience was so deeply entwined with a narrative of exclusion, isolation and loss.
In 2019, I was lucky enough to start working as a content editor for the National Deaf Children’s Society. It is so rewarding to see deaf children and young people with the kind of confidence I always wished for; and it is also reassuring to learn that the difficulties I faced as a deaf child in a mainstream school (listening fatigue, issues with working memory, discrimination from teachers who refused to wear my radio aid) were not character flaws but common problems for deaf children growing up in a hearing world.
“I feel like I don’t fit anywhere – I’m not part of the deaf community, but I don’t fit in the hearing world either,” is a line I regularly hear from deaf young people – and one which I wrote over and over again in my teenage diary. I’m grateful to play some small part in helping those children and young people to access the education, healthcare and peer support they need to develop positive deaf identities.
Ten years post-op, I now describe myself as hard of hearing. Despite my audiogram showing a bizarre squiggle covering every level of deafness, from mild to profound, I have what I like to call ‘perfect hearing’: ‘hearing’ enough to hold a conversation with my (admittedly endlessly patient, oft-repeating) flatmate without hearing aids in, as long as the flat is quiet and I can see her face; ‘deaf’ enough to sleep through the trains which rattle past our balcony and keep her awake, even with my window wide open. When office conversations turn to Love Island, I can easily turn my ears off and ignore it. When the conversation turns to the latest Netflix true crime docuseries, I can tune back in.
And yet, and yet… the other day I spoke to a parent whose toddler wasn’t diagnosed as deaf until the age of 2.5, despite having been profoundly deaf since birth. They was close to tears as they described the moment of their child’s cochlear implants being switched on.
“When you google ‘cochlear switch-on appointment’, you see all those videos of kids crying and happy, responding to their mum talking,” the parent explained. “But it is wasn’t like the videos at all.”
We all know the videos that parent was talking about: baby hears for the first time. Baby cries tears of joy hearing mum say, “I love you.” Those videos are misleading at best and manipulative at worst, because they present a simplistic world in which a person can instantly switch between deaf and hearing. There’s a similar vibe in those videos of ‘learning to walk after my amputation’: a sped-up clip in which we see the amputee go from hospital bed to athletics track within seconds, skipping past the months and years of difficult, painful rehabilitation, and entirely bypassing the fact that an amputee proficient in using a prosthetic limb is still an amputee.
And the worst part is that I played my own part in perpetuating that harmful myth. In the months and years after my hearing surgeries, my mum and I would tell, over and over again, the story of how my surgeon hit a tuning fork the day after surgery and I wept at hearing the sound; the ‘moment’ I heard running water; the ‘moment’ I heard my dad’s voice. When we tell the stories of those moments, we neglect to mention the day I left audiology in floods of tears after learning that my hearing was still not – would never be – perfect, that I still had to wear hearing aids. We skim over the fact that growing up deaf means that my brain forgot, and will never regain, fundamental neural pathways that allow those who grew up hearing to connect sound with meaning. We don’t mention the fact that, ten years on, I still struggle to identify everyday sounds; I still can’t watch telly without subtitles; I still lip-read every day, because lip patterns still and will always mean more to me than speech sounds. And most importantly, we don’t point out that all of those things can be true at once. I love listening to music. I find it really hard to understand speech. I used to be deaf, and now I can hear, and my experience of deafness continues to shape my experience of hearing.
The truth is that disability and deafness are not binary, and being hearing is not necessarily preferable to being deaf. You don’t flip a switch and swap from being one to the other: walking to wheelchair; deaf to hearing; blind to sighted. Had I chosen not to have surgery and to stick with being deaf, I wouldn’t have suddenly become fluent in BSL, either. Communication is learned. Identity is a process.
I can’t ever say whether I should or shouldn’t have had my hearing surgeries, because my experience of deafness was so firmly embedded within a hearing world. Had I had greater access to the Deaf community during childhood, perhaps my choice would have been different – or perhaps I’d still be where I am today, fumbling along as a little of each. What I can say with confidence is that I am absolutely grateful to have had those ten years of deafness, because they gave me a perspective without which my life would have been poorer. And I’m also grateful to have my current level of deafness, because as nice as it is to be able to listen to music, it’s also really nice to be able to sleep soundly beside a train track. And who needs to talk about Love Island, anyway?