Disability’s Biggest Side-Effect: Ableism

When people ask me, “What’s the biggest challenge you face as a deafblind medical student training to be a Doctor?” my answer is always, always the same:

“It’s not my disabilities that is the biggest challenge, it’s the misconceptions, stereotypes, and ignorance of other people that is the most difficult”.

Again, this was something that I touched upon in my latest television interview, on Channel 4’s ‘Steph’s Packed Lunch’, and how I am continuing in trying to try break down those old misassumptions when it comes to ability, and all things possible, not impossible.  With all the other challenges I’ve had to somewhat conquer over these last 2 years; a 17-month hospital admission, the life-change and trauma that has come with this, financial stresses, social isolation, huge impacts on my mental health and feeling of purpose, and the setbacks this has all resulted in, really, the ‘challenge’ of being ‘that deafblind medical student’ is actually just a tiny grain of sand in one very big desert.  

But being ‘off the radar’ for the last 2 years, no thanks to a deterioration in my health and such a long hospital admission that had me navigating the twists and turns of life, death, and everything in between, it has meant being away from that advocate role – a role that I naturally fell into when having to stand up for myself, and educate others on disability in medicine, when my response to workplace discrimination was to be positive, and open up the conversation, rather than fight against it.  Only, after last month’s social media post, in which I shared the miraculous and overwhelming news that I’d be returning to medical school again after such a long and awful period of illness, the same old familiar question blew up, and out, again – fire, smoke, sparks, and all:  “But how do you do medicine as a deafblind person?”

And so, I started a series of misconception and myth-busting videos on TikTok, a channel I, at that point, knew very little about, and quite honestly, didn’t really ‘bother’ with.  And it went viral, overnight.  I woke up the next day to an eruption of comments, both good and bad, and 2.4 million views on one of my myth-busting videos. It wasn’t a case of ‘I had found my voice’ – it was this crazy situation where the voice had hunted me down and dug me out again.  Yet, like with anything, I expected the extremes in opinion and comments.  After all, what I am doing is not exactly common or well heard of, and to many, may seem ludicrously controversial.  And so, beyond many truly wonderful, kind, and encouraging comments, I  did also got the downright rude, repulsive, and well, ignorant stuff too – was I surprised?  Not in the slightest.  

By each second, I was getting the “it’s a ‘no’ from me!”, as though I was trying to enter some talent competition or something – from people who have no idea what medical school truly entails, and for that matter, what disability really means beneath the skin.  The biggest irony came with the fact that these were the same kind of people that actually didn’t ‘look’ or ‘listen’ to anything that I had explained in my myth-busting videos, which actually held the very obvious and straightforward answers to some of their otherwise mind-boggling questions.  The content I was posting, that intended to break down ableism, was proving the very exact point that ableism very much still exists, and that society still has a long way to go in its education and understanding of what it means to be disabled. 

So far, I have been called “an inert vegetable”, “waste of space”, “a joke”, “more sick than her patients”, and somebody who has “stolen the medical school place of an able-bodied person”.  Except, what people don’t realise is that I had, and have to, go through exactly the same processes, exams, training, and hard work as anyone else in Medicine, disability or not, without any exceptions, exemptions, or shortcuts.  

Still, I ensure to clearly state that I’d much prefer people to ask questions and be curious, rather than just assume, and hence often incorrectly perceive how things are done.  In the part of society that are hugely ignorant to people with differences and disabilities, they are split into the obliviously ignorant – those who simply don’t know but are willing to learn, change their perceptions, and try to understand, and the purposely ignorant – those who, no matter how much you try and educate, provide the evidence, guide them through the realities, they refuse, and don’t want to, change their labels and stereotypes.  So, when this bunch start questioning how I could possibly communicate and speak as a deafblind person, for instance, despite me very evidently talking directly to them in real-time, I begin to wonder whether some of society is actually more deaf and blind than me, in a metaphorical sense, because I honestly don’t know how else I can ‘prove’ to someone that I in fact do speak, other than through…well, speaking?

Of course, there’s that ignorance, and there’s my ignorance – blissful ignorance; the ability as a deafblind person to, quite literally, not have to care to see, hear, or engage with such ableist attitudes, because my role, and my purpose, is only to rid of ableism, not encourage it.  Having said that, there are the odd occasions where I cannot help myself but to respond with some sarcastic, and, in my opinion, frankly hilarious, comebacks to some of the responses to my unique journey.  After all, humour is the best kind of mockery to hate.  The best, of course, is the classic typo of “dead-blind” instead of “deafblind”, and being told I would never be able to do or achieve anything as a dead-blind person.  I have to, through chuckles, politely point out that yes, I definitely would not be able to do anything as a dead-blind person, because, well, it’s just not possible, if you’re clinically not living.  One woman also felt the need to point out that she wouldn’t let me “near even dead fish”.  I responded by informing her that I wouldn’t either…because I am vegan.  And, for those who exclaim that they’d never let any blind doctor near them with a needle, in case they’d get “stabbed in the forehead”, well, I too would be concerned if a doctor had gone through 6 years of medical school to not know the difference between a head and an arm…really?  It’s not rocket science

Interestingly, the most common comment that has popped up in response to my journey as the UK’s first deafblind person training to be a Doctor, is the comparison to allowing a blind pilot to fly a plane, when there has never been any mentioning of me flying any plane in the first place.  Firstly, a pilot is not a doctor, and a doctor is not a pilot – I could use an example as demonstration, between an orange and banana for instance, but they are quite obviously two very different things, which some still find hard to see.  But, it nonetheless gave me the opportunity to point out that actually, blind pilots do exist, and that flying a plane with little, or no vision, is entirely possible, thanks to an incredible advancement in today’s age, which we call technology.  Miles Hilton-Barber is one incredible example of this – a British adventurer, who, despite being blind, flew a microlight plane 21,000km from London to Sydney, as well as climbing Mont Blanc and running across the Gobi Desert, to name just a few.  Miles Hilton-Barber also proves, quite literally, that his blindness is nothing but a grain of sand in a giant desert, when it comes to not letting ‘disability’ hold him back.  

In addition to Miles Hilton-Barber, I also ensured to mention some other incredible people, who, despite their disability, have thought outside the box, been innovative and adaptable in using their differences as superpowers – something that many in our society can’t see or hear to do, simply because they haven’t had to.  Henry Fraser, a tetraplegic who paints with his mouth, Rose Ayling-Ellis, a deaf actress and dancer who performs beautiful dance routines by feeling the vibration of the music’s rhythm through the dancefloor, and not forgetting to mention my friend and colleague, Dr. Stanley Wainapel, also a blind doctor, in New York who himself was the inspiration, role-model, and proof to me that what I was doing, and working towards, was entirely doable.  We exist.

As for being an “inert vegetable”, I quite fancied the idea of a ‘comeback’ video, reminding the said commenter that the very obvious difference between myself and a vegetable is that I did not grow in a garden, nor can I be mashed, peeled, grated, or roasted – neither physically, nor metaphorically, by their comments.  If anything, these ridiculous statements only make me more determined to continue, adding, excuse the pun, flavour to the palette.  However, I later discovered I only had tomatoes left in the fridge, and well, sharing a comparison video with these squishy red things would only set the internet off even more, with the whole fruit vs vegetable debate!

But hey, on a more serious note, it is important to point out that, just like ableism clearly has here, deafblindness also has a spectrum.  In short, a person can be diagnosed deafblind and still have some amount of usable hearing or vision, or can compensate considerably through the use of alternative senses and adaptations, which all human bodies are surprisingly very clever at doing.  In my educational content, I explain how a deafblind person can respond to crash calls and emergencies, take blood and insert cannulas, interpret scans, diagnose complex illnesses, and identify rashes.  Vibrating crash bleeps, feeling for the veins rather than seeing them (something that even fully sighted healthcare professionals are taught to do, by looking away or closing their eyes, when training in the skill), knowing your vacutainer is filling with blood because it feels warmer and heavier than an empty bottle, and the idea that Medicine is heavily a team sport, where everyone takes on their own role and responsibility, hence where not every role necessarily requires vision or hearing.  Oh, and the crucial pointer to those not familiar with the medical profession – that not all doctors are surgeons…because no, your psychiatrist is not trained to remove gallbladders, nor is your ophthalmologist trained to interpret niche ECGs, and so on.  Hopefully that clears up the whole unnecessary “deafblind girl performing open heart surgery on me” hysteria.  

My Medicine journey has not been straightforward, and certainly will not be straightforward going, well, forward…but I’m okay with that, because I know that, by following my own gut instinct and self-belief, with determination, hard work, and the ability to be innovative and adaptable, my very doable and possible ‘impossible’ will help to guide others doubting the untrodden path to journey it too, regardless of what some ignorant and short-sighted (the truly ‘deafblind’) people suggest.  Hence, I am forever empowered to do better, be better, and to implement change, educate, and challenge attitudes.   However, this determination, positivity, and pushing forward, no matter what, portrayed and shared is not to say that I am also not self-doubting and turbulent inside too.  This focus on being a role model, and a positive role model only, in the media, has also knocked me.  Why?  Again, not because of my deafblindness or because of simply being that ‘deafblind medical student’, but because, as a patient myself these past 2 years, the amount of unforgiveable neglect, gaslighting, and dismissal that I have also experienced from the very profession I am working towards, I have been left with trauma and a significant feeling of worthlessness, wanting to scream aloud to the world that my encounters have been negative too.  I guess that brings out even more, the very fact that we are all just human, made just as vulnerable and broken, by, ironically in my case, the very doctors who failed to see and hear me when I too was on ‘the other side’.  That trauma is something I, and I only, will have to deal with in time, as a side effect to perhaps the not so great aspects of our divided healthcare system, ableism and inequality aside.  But whilst my traumatic experiences from being a patient does have me very much doubting myself, feeling uncared for and very much without worth, whilst I am that medical student, and ‘the UK’s first deafblind person training to be a Doctor’, I simultaneously, on the other end of that famed old spectrum, feel stronger and more determined than ever, to continue steering towards my Doctor dream, and making the world a better, more accessible and understood place, for other disabled people dreaming to be a Doctor-to-be too.  Perhaps someday, ableism won’t have to be the biggest side effect to a person’s Medicine journey after all, or for whatever journey it may be, for that matter.  

TikTok channel:  @alexandraelaineadams

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