“Being a Deafblind person has given me the advantage of being a better doctor”

OT spoke with Adams after a long day in geriatrics at University Hospital of Wales in Cardiff, where she is completing a clinical placement as part of the final year of her medical degree.

“I spent a great deal of time today with a patient who, classically, didn’t know what was wrong with their hearing aids, which were broken,” she explained. “As a hearing aid user myself, I took the opportunity to do a little bit of a Blue Petering to see if I could fix it, and I did. It was really satisfying. The delight on her face when she could hear everything at last was lovely.”

In 10 months, Adams hopes to be qualified, and is currently applying for junior doctor roles in London – something that she does not have a huge amount of say in, despite various public transport and other requirements as a person living with disabilities.

Ahead of the next step, Adams is speaking as part of the Deafblind UK Conference, which is taking place online today (5 October). OT spoke to her about perceptions around those with disabilities, her journey through medical school, and what needs to change in the healthcare training process.

Could you tell OT a little bit about your Deafblindness? Is it something that you were born with, or something that has developed?

I am registered blind. I have just under 5% central vision in my left eye, and none in my right, and I’m night blind. My conditions are microphthalmia, and bilateral retinal coloboma. I’ve also got some dislocated lenses, nystagmus, and cataracts.

With my hearing impairment, I’m classed as severe to profound sensorineural hearing loss. I wear hearing aids in both ears and without those, I don’t hear anything. I’ve had hearing aids since I was two.

Both conditions are congenital. Obviously, mum and dad knew straightaway that there was something wrong with my eyes. Most babies have very big eyes, but I had very small eyes. Newborn hearing screening wasn’t compulsory in the early 1990s, so I don’t think my parents or the doctors knew until I went home and I wasn't responding to the dog barking next to me. Then, they realised something must be wrong.

You advocate for accessibility and are speaking at the Deafblind Conference 2023. When did you start to get involved with advocacy work?

It was unintentional. Years ago, I started to experience discrimination on the wards as a Deafblind medical student. I was finding, particularly in the early years of placement, that people were raising their eyebrows at me, thinking, “what is she doing here? She’s got a white cane and hearing aids. She can’t possibly be a medical student.”

I remember on my first ever day of placement, one of the senior consultants said to me, “imagine you’re a patient. Would you want a disabled doctor treating you? Absolutely not.” They sent me home, within half an hour of me arriving.

Over the next few days, I had other doctors saying, “what are you doing with the patient’s cane?” I said that it was my cane, because I’m registered blind. They told me they didn’t want me touching any of their patients. I’ve had doctors calling me an invalid when I’ve asked them to speak more loudly on the ward round, because I’ve got hearing aids.

It was then that I started speaking up, but instead of moaning, I tried to turn my negative experiences of stereotyping and ableism into a more positive message. I did it by blogging and writing, and then I was asked to do a TED Talk, which I did in 2019.

I got a lot of feedback from the general public. Half were like, “wow, this is amazing. You’ve inspired my granddaughter to do medicine even though she’s got a visual impairment.” Lovely, positive comments.

Then, you’ve also got the ignorant people. You get people who don’t understand, but are willing to change their perspective if they’re educated on the topic. And then you get the ignorant people who, regardless of how many times you say, “actually, I can do this,” just don’t want to know. It made me realise that, as society, we are still so ignorant and dismissive when it comes to what people with disabilities can do.

I naturally continued with advocacy from there. When people ask, “how can she possibly do that?” I come back and say, “actually, I do it like this.” I started a TikTok, which I’d never done before. I started a misconceptions series, where I would do a video on how I use a stethoscope as a Deaf person, or how I insert a cannula as a blind person.

I explain in my conference talk that I was the first child in the family, and my parents didn’t have any support. They’d never heard of Deafblind UK. They were in the dark, and didn’t know how to support a child with Deafblindness, but we obviously got through.

I hope future young people with Deafblindness have better opportunities, better awareness and links to support, and a role model, which is something I never had. Being the first Deafblind person training to be a doctor, I hope that I can be a role model to others who want to work in healthcare.

As society, we are still so ignorant and dismissive when it comes to what people with disabilities can do

Did you have preconceived ideas of how people might react, and what you might have to face?

I knew that I would face some barriers and some resistance, because it’s not a common thing. How many Deafblind people do you see going around with stethoscopes and doing surgeries?

I thought I would get that stereotyping and discrimination from patients, but nine out of 10 of my patients are really open. If anything, they see me as being more human, so they open up to me more.

It’s my colleagues that I’ve seen discrimination from, although not so much at the moment. I think, because I’m a final year medical student, they’ve realised that actually I am serious, and I can do what the other students are required to do at this level.

It’s the same as sexism or racism – there’s just so much prejudice in the workplace. I do get it from colleagues more than patients. I would rather people ask, and not assume. If someone does say, ‘what are you doing here? How can you do this?’ I will be upfront and just hope that that’s a way of educating them and opening their eyes and ears to what is doable.

I don’t have a pre-made response. I go into work every day with half an expectation that someone is going to look at me and raise questions, but in the moment I’ll say whatever I need to say. I know there are people out there who really don’t like being asked, but I’m fine with people asking questions. I’d rather they are curious and I give them the right answer, than them just assume and treat me differently.

Do you think your experience of being a Deafblind patient has influenced how you approach becoming a Deafblind doctor?

Yes and no. Because I was born Deafblind, I don’t know any different. I don’t think about it every day, because it’s who I am. I don’t see my Deafblindness as a disability; if anything, it’s a superpower or an asset. In that sense, it’s more my other experiences of being a patient, with other physical conditions, that I feel makes me a better doctor – having the empathy and the understanding.

Having said that, there are a lot of things as a Deafblind person that do make me a better doctor, compared to people who have got full vision and full hearing. I have quite a few examples whereby doctors with perfect hearing have been completely ignorant and oblivious to somebody's suffering. A patient doesn’t have to be vocal – they could be sitting in the bed, too scared to say what the matter is. As a Deafblind person, I often find I have that sixth sense of knowing when something isn’t right, which a lot of people don’t pick up on. Ignorance is the greatest form of Deafness, more than any kind of physical hearing impairment. I have very good listening skills, because I have to concentrate more on hearing that person. I am often able to pick up more information than somebody who is taking a quick history and then moving on.

It’s the same with my vision. I often say that I might not have as much eyesight as most people, but I have far more insight than many. And I think insight is so much more important to have in a career in medicine, because you need to see that patient as a whole, not just what’s on the outside. You need to be able to have that deeper understanding of what they might be going through, whether that’s physically, mentally, or psychosocially.

When taking blood, the way is to feel for the veins. Fully sighted members of staff are trained to close their eyes and look away in order to identify the best veins to canulate. Being a Deafblind person, my sense of touch is heightened. Being a Deafblind person has given me the advantage of being a better doctor.

I have very good listening skills, because I have to concentrate more on hearing that person

On your website, you mention a phrase about expecting to see horses rather than zebras when you hear hooves. What is the importance of that phrase for you?

The phrase is used in the rare disease community, and having another rare condition (Adams has Ehlers Danlos Syndrome, Mast Cell Activation Syndrome, and a rare metabolic condition) I’ve become familiar with the term.

In medical school and through training, we are more and more being taught to just identify the common stuff. If someone comes in with chest pain, you instantly think, “heart attack.” But if you’re doing that, you’re forgetting about all the rare stuff that could be the reason for what’s going on.

That’s why we use the horse-zebra analogy. Obviously, horses and zebras both have hoofbeats. But if you hear hoofbeats behind you, because you’re more likely to see a horse, you assume it’s that. It can be applied to people with disabilities. It’s another way of saying, “we have this preconception of what people look like, sound like, act like; their capabilities or their inabilities.” I think it can be a dangerous thing, but we all do it, unfortunately.

What would you say to other healthcare professionals to encourage them to see individual circumstances, rather than just the obvious?

To not neglect the possibility of there being that zebra. I’m an ambassador for Medics 4 Rare Diseases, so I’m really trying to educate healthcare professionals to be more conscious of what they’re doing when they’re taking history and examining, and what they’re thinking when they’re seeing patients, and not to have that preconception of what they’ve come in with.

Not making assumptions is applicable to everything, including towards a new colleague who might have a disability or a hidden illness. It’s all well and good to have all the teaching and all the textbooks in the world, but it can give us a very narrow periphery of what we’re looking at right in front of us.

What changes need to come about in the medical school training process, either for Deafblind students or for people with either condition?

The biggest thing from my experience is to stop the tick box exercises. My journey started with one medical school that accepted me. I contacted them between getting my offer and my results to check that they could definitely support and accommodate me. I was told time and time again that it was fine, they were looking forward to having me; support was ready and in place.

I got higher grades than what they’d asked for. Then, a week before moving into accommodation, they rang me and said they’d changed their minds. They said, “We don’t want you anymore because you’re disabled.” I had to reapply elsewhere the following year. They had essentially ticked the box to say they hadn’t discriminated; they had invited a disabled person to interview. But once that student is there, they can technically do anything they like. In my case, they got rid of me before I started. So, it’s to say: stop doing this as a tick box exercise. It should be actions, and it should be genuine.

People need to be deterred from thinking that Deafblindness is being completely blind or completely deaf, or if you’re in a wheelchair, completely paralysed. We need to remember that every disability is on a spectrum. One person who is Deafblind is not going to be the same as someone else who's Deafblind. The same goes with wheelchair users. Some people might have varying levels of use of their arms and legs. You cannot apply one set of rules for each disability. Everyone is completely individual, and it’s only when we start taking that approach that we can support people in the correct way.

We need to remember that every disability is on a spectrum

Can you tell OT about your meetings with Deaf and blind doctors in the US?

It was quite a big thing in my journey. In the in the early days, when I was getting a lot of “you can’t do this because you're Deafblind,” I just decided, spur of the moment, to go to America. I don’t know why I thought America in particular. Maybe because it's very techy. I didn’t even know that Deaf or blind doctors existed at this point.

I Googled blind doctors and Deaf doctors, and reached out to them. Some people I couldn’t get in touch with directly, so I went via their old university or medical school. I managed to get in touch with some, booked flights, and went out to New York and San Francisco. I met five completely blind doctors, and one completely Deaf doctor. The Deaf doctor was a cardiologist, which was amazing. He was the one who introduced me to the Bluetooth stethoscope, which I use now, which was really cool.

I went out there thinking, “it must be the fact that they’ve got more money, or more technology, that helps them be doctors despite being Deaf or blind.” However, the biggest difference I found was the fact that their colleagues were just more accommodating. They were more open to the idea of coming up with innovative ways to accommodate them, which unfortunately we still don't have in the UK. We’re still very quick to stereotype and prejudice, sadly. It was a very vigorous trip, but really inspiring and empowering.

What is your speech at the Deafblind UK Conference focused on?

It takes people through my journey. I titled it Setting sights on the impossible. I’m a very optimistic person, and I have never let anything get in the way of my hopes, my goals and my dreams, despite being Deafblind. I have never personally seen anything as being impossible. But growing up, wanting to do medicine, and going around the world on my own, people said, “Hang on a minute, that’s impossible. You can't do that.”

The talk takes people through my experiences of being a Deafblind person in mainstream education, the hurdles I faced during university, the kind of things that I’ve had to learn and that my family have had to adapt to, and what I hope for the future. I hope it has good substance and helps to empower people. It’s to spread that positive message, that things are doable if we have more role models, and we listen to those experiencing Deafblindness directly, whether that’s the person themselves or their families.

You have been a Team GB swimmer and travelled solo, and you also set up the Faces of the NHS photography series, as well as being the country's first Deafblind trainee doctor. Do you feel like you’re a trailblazer?

Yes and no. I’ve always been a person who likes to keep my head down and keep myself to myself, and focus on my goals. But once the world found out, I got a little bit pestered by the media. Sometimes it has got quite overwhelming, but then you’ve just got to say, “Well, there must be a reason for this.”

I've embraced it and utilised it to share that message to be a role model to others. So, in a way, yes. I hope that I am a positive asset and figure for other people. But, on the other hand, I’m also just Alexandra. There are thousands if not hundreds of thousands of Deafblind people out there. We’ve all got our own lives and our own achievements. I just happen to be doing something slightly crazy with mine.

The Deafblind Conference 2023 has a theme of Connected Lives and takes place online today (Thursday 5 October) from 9.30am. People can register for the conference until 5pm in order to watch sessions afterwards.