‘When I say I’m deaf, people panic.’ Shared stories during Deaf Awareness Month
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More than 1.5bn people around the world live with a degree of deafness; it’s one of the greatest public-health challenges of our time. But support systems remain limited. In the UK, studying British Sign Language is not part of the national curriculum, with accredited courses costing up to £700. Theatre productions typically have one captioned performance in a run of shows, and only about one per cent of cinema screenings are subtitled. The lack of inclusion fosters feelings of rejection and isolation, leaving many to hide their deafness from the hearing world.
“It’s important for us to share our stories,” says Lily Bertrand-Webb, the photographer behind the portraits on these pages, who has had a cochlear implant — a surgically implanted device for people with severe to profound deafness — since she was nine. Bertrand-Webb remembers the moment her implant was switched on. “It was amazing,” she says. “It was the first time I could hear birds sing, water coming out of the tap and packets of crisps rustling.” (After four years on the waiting list, Bertrand-Webb now has a “life changing” Bluetooth-connected Nucleus implant system, allowing her to listen to music and talk on the phone.) But not everyone who can opt for a cochlear implant will do so. Recovery can be difficult — it’s not a one-size-fits-all procedure — and some reject the implication that deafness is an issue to be “fixed”.
Additionally, technology is not always accessible to those who want to use it. Top-of-the range hearing aids cost several thousand pounds per ear, and private cochlear implant surgery is more than £20,000. Elsewhere, funding is plummeting, taking with it access to therapies and specialist education. On average, UK-based deaf children achieve a GCSE grade lower than hearing children, while in countries where support is virtually non-existent, up to 90 per cent of deaf students function below their expected reading grade level.
Awareness is improving, however. Last year, the BSL Act was passed with a view to promoting the use and facilitation of British Sign Language. And films such as 2021’s Sound of Metal and slightly better representation on reality TV are helping to showcase both the challenges and achievements of the deaf community. “[Being] deaf or hard of hearing is difficult; it’s exhausting,” says Bertrand-Webb. “[But] we’ve all found ways of dealing with it.” Here, four people share their journeys to self-acceptance, discovery — and success.
25, internet personality, dancer and podcaster
I was born completely deaf; my mum and dad found out when I was 12 months old. I have hearing parents, so it was a new experience for them. Some people decide not to have a cochlear implant, but they saw it as an opportunity. They wanted me to experience the hearing world, to hear their voices. I had the operation at Bradford Hospital when I was five, and I’m still in touch with the surgeon today.
A big misperception is that a cochlear implant restores hearing — because I’ve had one, I’m “fixed”. That’s not the case. The implant is completely separate to the ear: I think of it as a robot that I hear through. I lip-read all the time, particularly with new people and accents. It can be really exhausting; a lot of deaf people struggle with concentration fatigue. I don’t watch anything without subtitles.
My implant broke internally when I was 16 and I couldn’t hear for five months. I missed out on conversations with friends and felt really isolated at times. No one else in my school was deaf, and British Sign Language wasn’t an option to learn back then. When it first came back on, everything sounded robotic — even my parents’ voices were different. You have to train your ear and tune your implant — the pitches, the tones — until it goes back to normal.
I used to beat myself down. I’d wear my hair down to hide my implant and keep myself to myself. What made me confident was dancing. You have to be expressive with dance; you have to share who you are as a person. I got into performing arts college in Wakefield, then a professional dance conservatoire. I graduated and worked as a self-employed dancer, did some music videos and got a contract in France for six months. People ask me how I’m so in time with the music: it’s just training. Anyone can train with a disability; you’ve got to figure out what works for you. It’s not just deaf people that can be out of time.
Being in the [ITV reality show Love Island] villa was a learning experience. I’m an emotional person anyway, but that was really heightened. Coming out of the show there have definitely been obstacles. When you’re in the public eye, you’re going to deal with negativity — I get it about my voice, the way I speak. But I have a platform to educate people and turn that negativity into a positive.
I’m an ambassador for DeafKidz International, and next month I’m going to Malawi with cochlear implant company MED-EL — some kids out there can’t even get a hearing aid. I’ve also got my podcast, Superpowers with Tasha, which is about anyone with any kind of disability. I always wanted a platform to normalise people with disabilities. Often we’re looked at in such a negative way. But if you listen, we’re the same as everyone else; we’re all equal. We should be celebrating who we are.
36, poet and broadcaster
When I was six, my mum bought a telephone that she said everyone in the house would be able to hear; I never could. That was what diagnosed my deafness. It also answered all these other questions about why I was slow to walk, slow to talk, slow to write and all that kind of stuff.
There are hairs behind the eardrum, kind of like antennae, and when sound comes through them they help it travel to the brain. I have less hair back there than most people, so I don’t hear high-pitched sounds: no birdsong or alarms. Even people with soft, high-pitched voices: I just see lips moving. Hearing aids help pick up the sounds that I don’t hear naturally — I use rechargeable Oticon Digital/Bluetooth hearing aids with an app for sound boosts and an external mic to help me hear in wider spaces — but parts of sounds still disappear. I have to do a lot of guesswork, and I don’t always get it right. But I’ve been trained in lip-reading, and I’ve been doing that all my life.
My mother helped find me a teacher of the deaf called Penny Wiles, who fought for me to get the support that I needed and seemed to understand that a mixed-race, working-class kid going through the system with a special-education need was going to have some challenges. That kind of support isn’t really available any more; the funding has dried up. So it feels like I have a responsibility to speak out and use the skills I acquired.
I’ve had pretty much every zero-hour contract job you can think of. Removals, flyering, paparazzi photographer . . . you name it, I’ve done it. But I’d always get fired because I’d only fulfil half of an instruction. I didn’t have the confidence to keep saying, “Hey, I’m deaf, you need to look at me when you’re talking.” Workplaces aren’t kind to people who have different needs. You’re expected to be a cog in the machine.
In all of those jobs, I would go to the bathroom, lock the door and write poems in my notebook. I was 18 or 19 when I decided that, whatever happened, I was going to make poetry work. I set up a poetry night with friends in Hackney; I entered competitions, performances and slams. Then I started getting offered gigs around Europe. Poetry became not just a livelihood but a passport. It became a thing that I lived through.
My audiogram is the shape of a ski slope: my hearing curve goes down (most people’s goes straight across). And where it goes down, there’s a space above it, which is what some people call a loss, or deafness. I see that space as a portal. Writing is a way to enter that “missing” space, to explore the sound I have. The only reason it’s called a “less than”, a deficiency, is to do with how hearing society understands deafness. Finding ways to creatively express my experience has been very affirming.
Today, I’m a freelance teacher and a poet. I go to deaf schools and mainstream schools, and within those spaces I see myself — potentially — as an agent of change. I’m able to start conversations which I hope will be fruitful to the development of those students. I get them to write about their lives and experiences. But it’s complicated: there are so many different ways people think about deafness, and lots of different kinds of deafness. I’ve gone into deaf schools all over the country and internationally, and the thing all of them have in common is that nobody seems to be getting the support they need. It’s a worldwide struggle.
Last year, my book Can Bears Ski? became the first children’s book to be read in British Sign Language on the BBC. It was one of those firsts that’s like, “That is amazing” — but also, “What? In 2022?”
22, rugby player
I don’t really know what drew me to rugby. My younger brother had started playing and I went to watch his games. I wanted to try it, but I’d been told I couldn’t do contact sports because of my cochlear implant. The risk is dislodging the magnet that sits on the skull, and there’s a lot of things that could go wrong with it.
My parents and I looked into different safety measures and came across a scrum cap. If I was going to play rugby, I’d have to wear it all the time: that was our little deal. I look like an egg but I make a joke of it. If it means I can play rugby, I’ll take it. The good thing about it is that it’s not a special hat just for me; it’s an actual rugby head guard for preventing concussions. So I blend in with other rugby players, even if I do look like an egg.
All I’ve ever known is that I was born deaf. I got my cochlear implant when I was 14 months old, one of the youngest people in the UK to get one at the time. A couple of years ago we found out it might have actually been medication [Gentamicin, an antibiotic given to premature babies] that caused my deafness. The levels of it in my body weren’t checked before my next dose, which can cause side effects. To me, I’ve just been deaf from birth.
There are day-to-day struggles — the face masks were a nightmare — and on the field it’s not easy to lip-read. I’ve also had the odd issue where my implant has stopped working in the middle of a game. When it goes off, I can’t hear anything at all: the physio runs inside, gets me some batteries and I change them. I laugh about it, but at the time it’s pure panic.
Still, rugby has transformed not just my confidence, but how I see my deafness too. In school I was self-conscious about it, but rugby is a team sport and communication is massive. When I joined the England Sevens Women team, we had a team-bonding session where we had to speak about our rugby journey. From then on, everyone asked how they could support me, how they could make it easier on the pitch with little hand signals or explaining rugby drills beforehand. Just little tweaks.
I hope to open people’s eyes to the fact that deaf people can achieve in sports. I’m a patron for the Elizabeth Foundation — they helped me with speech therapy — and honorary president of UK Deaf Sport, looking at how we can get more deaf kids into both deaf and mainstream sport.
Most people haven’t even come across a deaf person before. When I say I’m deaf, they panic. If people had more understanding, it could create so much momentum. Tiny adjustments make a huge difference. [That] starts with awareness — everything else builds from there.
38, writer and comedian
I ’ve lived with hearing loss for nearly my entire life, but it wasn’t until my early 20s that I started wearing a hearing aid. They were the Phonak Lyrics, and their big selling point was that they were completely invisible. But because they’re so small, they’re not as powerful as other devices on the market. They weren’t nearly enough for what I needed, and I only very recently came to terms with that.
I was diagnosed with mild to moderate cookie-bite [mid-range] hearing loss in pre-school while growing up in Illinois. The audiologist recommended hearing aids: I wouldn’t do it. It was never a point of conversation and I never talked about it. My parents didn’t do anything to make it part of our normality; it was just ignored. The denial wasn’t conscious — I just didn’t think about it.
When you can’t hear as well as you need to function, you start to develop strategies to compensate. I didn’t want anyone to know. I didn’t want to look stupid. So I spent the bulk of my life forcing my way through: reading lips, body language and textbooks after school. All the metrics were high. My schoolwork was very good, I had friends — kind of — and I played Little League Baseball. On the surface, I was checking all the boxes.
Six months ago I got an infection that prevented me from keeping a hearing aid in one of my ears. I realised I couldn’t function in the world with just one. For a month I’d only leave my apartment to go to the doctor’s, which I hated because I’d have to traverse the city. Then I developed tinnitus. It was all a mess.
An ear, nose and throat doctor wondered if I’d suffered more hearing loss, a common cause of tinnitus. When he saw my audiogram, he was shocked that it was as severe as it was. He acknowledged how difficult it must be to keep up. No one had ever acknowledged that before. He didn’t even say it in an empathic way, but it was one of the most meaningful things anyone had said to me. It ripped me open.
I told my audiologist I wanted to switch to something more appropriate for my hearing loss, which is now in the moderately severe to severe range, and it would have to be something “visible” (I use the Phonak Audéo Lumity). The irony is you can’t really even see them. They’re Bluetooth-capable, so I can talk on the phone with them.
Connection is something I’ve wanted my whole life; I want to feel part of something. Comedy is a way to say the darkest thing that is on my mind and find a way to relate to people over it. Drew’s Adventures [which went to the Edinburgh Fringe Festival this year] is an invitation. I want the audience to come on this journey with me.
At the heart of it is something more universal than hearing. The place that I got to — isolated, ostracised, self-hating, whatever you want to call it — and the inner turmoil associated with that; there are a million roads to that place. I hope to encourage anybody to think about what it is they might be holding back that would transform their life if they didn’t.