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Cochlear implants; The Invisible Disability

Meningitis Now Believe & Achieve B&A Media Wall - Holly - cochlear implants - tile block

Holly Loach, former Believe & Achieve peer mentor, explores her challenging relationship with her cochlear implants. Holly lost her hearing following meningitis at 14 months.

“Writing about my experiences with cochlear implants has always been rather a challenge. I’ve put it off, delayed it, started, then stopped. It feels too large an experience to put concisely, and I often fear doing it injustice.

"Putting it in words might simplify it, or I worry I’ll read what I’ve written back and change my mind. I love to write, yet I've not understood this ambivalence I’ve had around putting the subject of my deafness, or my implants, down into words. But the more I thought about it, the more I felt that this difficulty was in itself, something to write about.

“I have a memory from my second year of University which I think offers something interesting. It was a standard Tuesday night and I was in an Uber on my way home from a night out – as you do. I had been thoroughly enjoying the boisterous fun of Uni. However, this particular night I had left my friends (and a neon-streaked rugby team) in the smoking area. I was tired and fed up. I hadn’t been able to hear anything. The night seemed extra noisy, the rowdiness extra rowdy, and I felt lost and overwhelmed.

“Usually, I left night outs giggling and embarrassing myself with my friends in the back of the Uber, but tonight I sat in the passenger seat, staring gloomily out the window. The driver picked up on my sad silence and asked if I was okay. Without really thinking, I said, “I’m fine, I just can’t bloody hear anything.” The driver didn’t respond and after a few moments, I suddenly realised I hadn’t given any context. “Oh, I can actually hear. Well, I’m technically deaf, but I wear cochlear implants.” The driver looked perplexed – not your usual inebriated drama. He listened empathically as I explained that sometimes, if I'm tired, it means I just can’t keep up. A lot of hearing is concentrating – something five VKs won’t help with, let’s be honest.

Truth in his words

“"I’m usually fine though. Some people at Uni don’t even know I have these implants," I said, as if it was a good thing. The driver, who hadn’t really said a lot at this point, nodded. Then, just as I was beginning to cringe from the sense I had overshared, he suddenly deliberated, "You’re not really in the hearing world or the deaf world are you?" Rather taken aback by his sharp observation, I was abruptly discomforted by the truth in his words.

“Without sounding too melodramatic, that conversation did turn into one of those 3am revelations. Yet when I first got out the Uber, I felt as lost as I had when I’d first left the club. What did he mean I didn’t belong in either the ‘hearing world' or the ‘deaf world’? As I wrangled with it, I realised that I only felt at a loss because I previously believed I had a foot in both – I was in some ways, ‘hearing’ and ‘deaf’.

“But now I felt strangely, neither. I knew I was incredibly lucky to be able to toy with the idea of being both, and that was because of my cochlear implants. They are, essentially, my ticket to the hearing world: every morning when I wake up and put them on, they insert me into society as an independent individual not limited by deafness. They are quite literally my lifeline; I cannot begin to imagine what my life would be like without them. Yet because they make my outward appearance an able, hearing individual, they inadvertently cloak my deafness – the thing I become only subtly aware of when I take them off at night.

Grateful for how my implants enable me

“I am endlessly grateful for how my implants enable me. Yet I realised, by doing so, they had made my disability, invisible. It all suddenly seemed just so painstakingly obvious. Of course, I’m not really hearing nor am I completely deaf. Yet why did I hold myself to a standard of the ‘hearing world’ when I'm not even fully ‘hearing’ anyway? My internalised ableism had held me captive in this ‘hearing world’ while forbidding my belonging to the ‘deaf world’. But by escaping from both, I found a new freedom. By being on the outside of things, I could find true clarity of the big picture.

“To my surprise, the more I unpacked my ‘invisible disability’, the less ‘different’ I felt. If we think about the terms ‘ability’ and ‘disability’ broadly, we all experience a degree of both at some point in our lives. Indeed, all of us are born into a condition of helplessness and dependency; all of us rely throughout our lives on technologies to augment physical abilities and compensate for physical limitations; all of us experience illnesses; most of us will grow old and will face increasing losses of physical and mental power. As ridiculous as this sounds, the way I need my cochlear implants is a bit like how we call an Uber when we’re running late. There are always going to be times when we physically can’t do everything, and being dependent on an external source is only an inevitable way to cope. ‘Ability’ therefore, is relative and temporary. ‘Disability’, rather, is universal.

“It is funny therefore, that disability embodies ‘difference’. Internalised ableism was a language of the projections and expectations of an ablest world in which I perceived myself a full and active member. My frustration at myself as ‘failing’ because I had to leave the club early should have instead been, why do I feel worthless if I can’t ‘keep up’? By integrating my disability into my ‘able-bodied’ self, I realised this value of ‘worth’ ran on a currency of how much we can do and how much we can produce.

Impossible to be a constant, well-oiled machine

“But no matter how physically ‘able’ we are, it is impossible to be a constant, well-oiled machine all our lives, and the moments we can't be certainly isn’t indicative of our value. Those of us who have cogs that cannot run as smoothly or efficiently, are a reminder that we cannot always have control over how much we produce, therefore cannot have control over our perceived ‘worth’. That explains why perhaps, society banishes and discriminates against those with disability. We expose a vulnerable truth: humans aren’t really in control of their own temporality, nor can they really determine the arc of their own histories.

“But why, for God’s sake, can’t a world obsessed with productivity just slow down a bit? The other day, I expressed anxiety to my aunt Emma about explaining to a potential employer that I’d have to record a meeting I was taking notes for and listen to it back, and because of that, it would take me longer to write up the report. Emma said, "You know, that could actually be a good thing. Your notes will be far more detailed and comprehensive." I remembered my pages and pages of notes from recorded University lectures which – took me hours – had always seemed a bit over the top. But it was because I wanted to pick up everything, not an utterance was wasted. Having cochlear implants made me a fussy, perfectionist listener. "And to be honest Hol," Emma continued, "you should say to the room, “if you want your notes in the report, you bloody well better make sure I can hear you!"" Everyone speaking slower and clearer, means quality, not quantity. Disability I realised, offers an alternative ascription of value.

“The difficulty I had writing about my deafness came down to the fact I didn’t know where I placed within this binary world. If I’m honest, I felt ill-equipped to write on disability, as if somehow I was a problematic non-disabled actor playing a disabled role. And really, I am privileged to not experience the outward ableist discrimination others do. Internalised ableism however, is still profound. Having felt a belonging to these separate ‘abled’ and ‘disabled’ worlds, I realised that the terms themselves are transient. They exist to hierarchise: ‘ability’ is granted value at the expense of ‘disability’. And really, they exist in a continuum. I’ve often been asked that if the technology advanced whereby my implant could be inside my ear, would I have it? Funnily enough, I've always said no. I like the visible part of my disability. I think I want people to see."