Grace’s growing confidence
At college, Grace just wanted to be like the other young people around her, but now she’s learning to embrace her hearing loss and everything that comes with it.
When Grace’s parents found out she was deaf at the age of three, it was the least of their worries.
“At one point, they’d been told I had three weeks to live,” explains Grace (23). “After everything they’d been through, finding out I had a hearing loss wasn’t a big deal.”
By the time she was three years old, Grace had survived two bouts of neuroblastoma, a rare type of childhood cancer. Her treatment included several rounds of high-dose chemotherapy.
“One of the chemotherapy drugs I was given is called cisplatin, which made me lose all my hair – not just on my head, but also inside my ears,” explains Grace. She recovered from cancer and the hair on her head grew back, but the tiny hairs on the cochlea inside her ear had been permanently damaged, causing a moderate to severe hearing loss.
“I don’t really remember anything before I got my hearing aids,” says Grace. “Growing up, I didn’t feel any different to other children because it was all I’d ever known.” Grace went to a mainstream school with a nursery, primary and secondary school all on the same site, so she had the same group of friends with her throughout her education.
“Staying at the same school helped because all my classmates knew about my hearing loss,” adds Grace. “I didn’t have to explain things, because I’d known most of my classmates since I was little.”
However, when Grace moved from secondary school to college, she was no longer with the same peer group and began to feel self-conscious about her deafness. “At that age, I wasn’t the sort of person who wanted to stand out,” says Grace. “My perspective was, ‘I’ve got hearing aids, so I can hear.’ I felt like I had to prove that I was the same as everyone else and asking for help would have meant that I was different.
“I was insecure and refused to use my radio aid at college. But whereas in school, our teachers would write on the board and then we’d do our work, at college, we had to do our work and follow the teacher at the same time. I struggled because I can either listen or write things down; I can’t do both.
“I realise now that using my radio aid would have helped a lot, but I didn’t want to draw attention to myself. I was doing double the work, spending four or five hours in the library every couple of days to catch up on what I’d missed during my lessons.
“Trying to keep up with everyone else was exhausting. Life would have been so much easier if I’d explained I needed more support.”
When Grace was 18, she signed up for a mentoring scheme for deaf children. She mentored an eight-year-old deaf girl, but it was the experience of meeting the other deaf young people who’d signed up to be mentors that really made a difference to her.
“Meeting other deaf young people completely changed my perspective,” she remembers. “It was the first time I’d met someone who just ‘got’ me. I didn’t have to explain myself or validate how I felt about certain things. They just understood.”
Getting to know other deaf young people gave Grace the confidence to advocate for herself. She stood up to a classmate who’d previously made jokes about her deafness and began learning British Sign Language (BSL). However, Grace’s newfound confidence was knocked during the Covid-19 pandemic, when she was working at a supermarket and couldn’t communicate with customers wearing masks.
“It was hard because it felt like I couldn’t do anything for myself,” explains Grace. “But it also pushed me to become more open about my deafness and be confident asking for support.
“Even though I’m older now, I still take my parents with me into hospital appointments, because I can’t lip-read when staff are wearing masks.” Grace finds that the health professionals she sees often forget about her deafness or speak to her parents instead of to her. “It makes me feel overlooked, like I’m a fly on the wall at my own appointments,” says Grace.
Grace has learned to be more confident, reminding hospital staff to be deaf aware. When she stays in hospital overnight, she brings a whiteboard so that staff can write things down to communicate with her.
Last year, Grace’s confidence was tested again when she began to lose her hair. Eventually, her hairdresser had to shave it off altogether.
“My hair has always been my security blanket,” explains Grace. “Having it taken away felt like the worst thing that could ever happen. Suddenly, having my hearing aids on show didn’t seem to matter anymore. In a funny way, it gave me back the confidence I lost during the pandemic.”
Grace now works in a school and wears a wig most days. She uses social media to raise awareness about deafness and alopecia.
“Since shaving my head, I’ve realised that people care more about how they look than how you look,” says Grace. “Whether you have hair or no hair, hearing aids or cochlear implants, other people care more about their own appearance than yours.
“Don’t get me wrong, there are still days when I feel insecure. I’m learning to tell myself that it’s OK to have those days, as long as the next day, I get back out there.
“You open up so many more opportunities by accepting your hearing loss than you get from hiding it. I’ve gained so much from embracing my hearing loss.”