I cannot hear. I am deaf, and have been deaf my entire life. It is a strange concept to consider – what I’d change or what I’d ‘rather have’. As a deafblind young person, with added physical disabilities too, in an ableist world, I have often been asked, if I had the choice, whether I’d prefer to have my hearing or vision ‘back’. And I’ve always said, without doubt – hearing. Yet, despite asking the question, this surprises most people. There is this perception, excuse the irony, that we are far worse off without vision for the world around us. But, without sound you are eternally isolated in what I can only describe as a glass box – everything you see is so precisely animated, yet none of it is strung with an in-time tune. I have lost friends because of my deafness, as I sit unable to dissect what the crowd is laughing away at in the noisy pub, absent from joining in with the others. People don’t go near you, too scared that they’ll either speak too loudly or too softly, too fast or too slow, too patronisingly or too obliviously. In hospital here, where I have spent the last 10 months, sick and bedbound, fellow patients have mistaken me for being rude, not attempting any conversation across the ward from our own beds, whilst some staff think me as demanding, as I repeatedly ask for the same thing, having not heard their response, as they mutter something quickly, face turned away, having already hurried out of the room to answer the next patient’s call bell. I’ve missed all three mealtimes of the day, on a regular basis, simply because catering staff have mistaken me for being disinterested, when in fact it was because I never heard them coming with the rattle of the tea-trolley, unaware of the day’s meal options, leaving without putting in an order. Bedbound, I am unable to move far without the assistance of staff to turn me in bed. I faff my arms around, trying to feel along my trolley table for the nearby comforts. But they have moved my stuff, in an attempt to tidy things away. Blind, I cannot see where these things have been put. Deaf, I never heard them say where these said things had been tidied away to. So instead you lie there, without phone or call bell. You can’t see to shout, you can’t hear to know how loud to shout. You are suddenly alone again, the only voice you can hear talking being the one inside your own small head, drowned out and uninformed. There is nobody.
“I can’t hear you!” I pleaded, again. Nothing. Nobody had stopped to listen. I was coming around in the recovery room from my latest surgical procedure. My stomach writhed in agony, now with one more tube and bag, and my breathing was tight, as though as I was trying to exhale through the tip of a small syringe. At that very moment, my hearing-aid batteries died and I could no longer hear anything around me – not even myself.
“Please!” I begged again, as I tried to explain where my hearing-aid batteries were kept, back on the ward. Without them, the world around me lay in silence, moving frantically in film, yet all sound was lost to a vacuum before my glass eyes.
When things went wrong, everything suddenly became frantic. I saw more people congregate within my small cubicle, as my blood pressure dropped and respiratory rate went up. There were about seven of them, each of whom I had told, my hearing gone, now deaf to everything around me. But for two hours, they carried on talking to me, as though it meant nothing, only the vibrations of their raised voices felt through the air above my head. Their faces came closer, but so did their hands, as needles were stuck into my feet and arms, with no warning or reason as to why. I had no clue what was happening to me, and I was scared. I had lost my lifeline. I had lost all sense of independence and control. I had lost my only superpower.
Not long before, I had been crying in the anaesthetic room, again, with at least seven or so healthcare staff, dressed up in blue scrubs and masks, around the very bedside. I told them through tears, very clearly and profoundly, at least three times:
“I do not want to go ahead with this. Stop. I’ve decided not to have the procedure”. But nobody heard me. It went ahead regardless, and I would pay the price later. I hadn’t been heard and by then it had all been too late.
My natural and automatic reaction to the doctors and nurses sticking various things into me, already at the very height of indescribable pain, was of course to push away anything that came near me. Without hearing, I hadn’t been comforted or reassured, lying there exposed and vulnerable with no explanation as to what was happening or why it was happening. But their response? I had to be restrained. With full physical force, six pairs of hands anchored me down into the mattress of the bed via my weak-wrestling ankles and wrists. I was so deaf that I couldn’t even hear my own screams, everything drowned out in a slow motion of confusion. I was utterly terrified. Of course, had I known the need for what they were doing, I would’ve happily complied. A medical student myself, not far away from Doctor qualification, I wasn’t stupid when it came to accepting intervention when it really was needed.
Back on the ward, on the wall above my empty bed-space, a sign reading:
‘I am blind and deaf. Please come close so that I can hear you’, stands at eye-level for everyone who enters my side-room, to see. But even then, it had often been ignored, or unseen; a metaphorical deafblindness in all those who were supposed to take better notice of my needs.
For the many days and weeks following my surgery, the team had filed in and out to explain what was happening and what the plan was next. But each time, perhaps due to unfortunate coincidence, the cleaner would be in the room, rustling around with crinkly binbags, slamming bin-lids or toilet-seats, or the nurse was there stripping off plastic packaging, washing down the prep trolley until it was squeaky-clean. All these background noises, more than just subtle distractions, blurted through my hearing-aids like earthquakes. I missed huge chunks of important information the team were giving me. They had already hurried off to continue with their ward round before I had the chance to ask them to repeat any of it.
I had, and still have, so many questions that remain unanswered. How long would the pain last? When would the next surgery be? What were the findings from the latest scan? Why was this all happening? But, with so many people huddled into one room, it was impossible to know who was speaking, and when, where to turn my head to, who to look at, unable to identify whose mouth was moving from behind their opaque face-masks. Turns out that the very people I had kept these questions for, were standing on the other side of my bed, behind where I faced my back to. Quite simply, I had no knowledge they were standing there in the first place.
What you hear both inside and outside the blue curtain are two entirely different things. As both a medical student on placement and a fellow inpatient lying in a hospital bed, I have seen countless elderly patients mistaken for being distressed or delirious, when in fact all it is, is the bewilderment of poor communication, and that they’ve left their hearing-aids tucked away in a dusty box back at home. As for other, younger patients who are deaf, like me, we too are often misunderstood – noted as either being purposely vacant or simply non-compliant. How have we, in healthcare, forgotten that deafness is a vast spectrum? All we require is for one person to come up closer to the bedside, without the chaos of any large, multiple-person teams, all talking over each other at once, behind the film of a clipboard, where more of the conversation sadly takes place between the staff themselves, rather than between the staff and their patients.
My frustrating experiences of being ignored and unheard, from both sides, whilst being here as a patient of 10 months, has taken me back to one of my very first days of placement as a medical student – a day where, in the beginning I had been accused and labelled an “invalid” by a senor doctor on the ward round, just because I had asked them to speak a little louder as I was a hearing-aid user, to later that afternoon when I, the deafest of the entire team, was the only one to hear, and hence raise, the concerns of a patient, who too had been ignored. Whilst her hearing was in no way affected, the doctors on the ward-round that day – well, their level of deafness in metaphorical comparison to mine, is to be debated. As I sat there, at this patient’s bedside, reassuring her that I knew how she felt, that I had once been there too, we both realised that kindness is the universal language of healthcare, and that hearing is not always required just to know someone’s silence is of suffering. The more patients I meet, who speak very little, tend to be those ones who, underneath, have the longest story to tell, and the loudest wail to cry.
I am familiarly acquainted to frequently sharing the story of Tim, another person, though not a patient, but a little boy also with hearing-aids, to anyone and everyone I meet. A basis to the storyline of my TED talk back in 2019, it gives us all a snippet of how hearing-loss is still misconceived in our ableist society. Whilst traveling along the London Underground, Tim and his Mother came and sat in the empty seats next to me, when Tim, no older than eight years, declared to both his Mother and the rest of the train carriage, that he wished to be a Doctor when he grew up. Whilst my heart secretly warmed in a proud fuzz, his Mother just laughed, and said:
“But Tim! How will you hear all the poorly people?” It was an immediate slap in the face, all possibilities now stark impossibilities. Tim sank down into his seat with disappointment. I never told Tim that I was a medical student training to be a Doctor, nor did I tell him or his Mother that I was the UK’s first deafblind person training to be a Doctor either, but what I did do was point to mine and Tim’s hearing-aids, before telling him:
“You can be anything you want to be. This, is your superpower”.
We still have a long way to go until we can all speak up with our voices indefinitely heard. It is no secret that silence speaks a thousand words, but it can also speak none at all. But for those of us who cannot hear, that silence can be deafening when others don’t listen. If you have ever suffered in silence like this, I hear you – again, no irony or pun intended. Of course it is about time to listen up and acknowledge that ignorance is a far greater from of deafness than any hearing disability. To the patients who accused me of either being rude or “not deaf enough” when I phoned my parents crying at the height of crippling sepsis – I did hear your hurtful words, but I was too sick to care what you truly thought of me. To the catering staff who think I am never hungry as I never order – I do in fact like to eat and drink (health-permitting, given my dependence on TPN and tube-feeding). Just please don’t ignore me when you come round with tomorrow’s menu, just because it might require a few extra minutes of speaking a little louder and clearer. And to my team of doctors, nurses, dietitians and physiotherapists – I know you are busy and always in a rush, but please, don’t hurry away before you finish your sentence – the words you mumble already halfway out into the corridor will not reach my deaf ears. I do want to know what’s going on with my care, just as every other patient does – it is really not that difficult to make your ward-round more inclusive to all, colleagues and patients alike.
In somewhat a summary then, it is of no surprise that I have my favourites when it comes to nursing staff – and it’s not just down to their impeccable professionalism, or the warming way in which they care, or how they ensure I get my pain medications on time so that I’m free of any great discomfort. The game-changer comes when those few actually communicate with me, without awkwardness or unease at my hard hearing, who instead understand the importance and preciousness of conversation when you’re a patient stuck in hospital for such a long time; deaf OR with perfect hearing, regardless.
So to that nurse – you know who you are; upon every shift we have enjoyed long conversations, yet you have repeatedly asked me, have I written anything new yet? Have I worked on another chapter of my book or written another blog post? I hadn’t, because of the sheer pain and fatigue of these past few weeks that you too have seen me in. But I knew you were right, that I should’ve, and that the reason you kept asking me was because you knew writing was my best medicine and greatest, most effective coping mechanism at this time. Well today I finally did that, ‘getting out’ what had bothered me for so long in these past few weeks since the surgery, onto paper for others, near and far, to know and learn from. Thank you for gently encouraging me each day, for talking to me like you would do with any other ‘normal-hearing’ person, and thank you – for ‘hearing’ me in every word of form. You listened.
And I can hear you.