As someone who has been hard of hearing since I was a teenager, I read with great interest about the case of Opal Sandy – the 18-month-old British toddler who has recently had her hearing “restored” in a pioneering medical trial.
Opal was born with auditory neuropathy, which is caused by the disruption of nerve impulses travelling from the inner ear to the brain, and which left her completely deaf. But after taking part in what is being heralded as a “groundbreaking” gene therapy trial at Addenbrookes hospital in Cambridge, she can now hear almost perfectly.
It’s fantastic news that this little girl can now hear. She will no longer have to go through the negative situations that people with hearing loss often face. She won’t experience being self-conscious about her hearing, as I did as an adolescent, nor the difficulties of meeting new people, such as having to ask them to repeat themselves again and again. She won’t miss out on job progression because of her hearing loss. What is often required to get on in a company – overt participation in meetings, receiving verbal instructions and engaging with clients – are all affected by hearing loss. The impact that this will have on her life is tremendous.
Opal’s case is something to be celebrated. But it doesn’t have the profound ramifications for all deaf people that some hearing people might assume. It’s important to note that every case is different, and hers is very specific. This treatment is only applicable to a particular and rare type of deafness, meaning that its implications are not as widespread as some headlines might suggest.
But what might worry deaf people more is the discussion around Opal’s treatment. Prof Manohar Bance, the chief investigator for the trial, has used words such as “normal” and “cure”. There has been talk of deaf people being “given hope”. For some in the deaf community, words like these can be insulting. They suggest that people with hearing loss are hopelessly and aimlessly wandering through life, waiting for a magic wand that will cure them. Word choices like this make deaf people feel endangered. They don’t acknowledge that deafness is not a disease or that deaf people are not abnormal – we are most often happy, successful and thriving individuals, and make up a community with a language and culture we’re proud of. None of that needs to be “cured”.
Hearing people may be surprised at just how many of us are already living successful lives: 12 million people, or one in five adults in the UK, have some kind of hearing loss – and they are becoming more vocal about “not saying sorry” for who they are. My great-uncle George for example, has been deaf for more than 80 years. He’s lived a very fruitful life and is still one of the happiest people I’ve ever met. I quit wearing my hearing aids nine years ago and still live a great life full of ambition and vigour – and with a much greater understanding of the nuances of disability.
But the language used to discuss Opal’s case only echoes what we often find in the press and popular culture. Quite often in films and TV, people with hearing loss are depicted as comical, lonely or eccentric; think “greased up deaf guy” from Family Guy, Bradley Cooper in A Star is Born or Bill Skarsgård in Boy Kills World. The Academy Award-winning film Coda, for example, while praised for its inclusion of deaf actors, disappointed some deaf viewers with its false stereotypes about deaf people and for focusing on the hearing characters. A Quiet Place II, the sci-fi horror film starring Emily Blunt, was similarly criticised for its emphasis on the technology – a cochlear implant – as the hero, not the person. Above all, it’s the notion that technology is our saviour that offends many people with hearing loss.
The National Deaf Children’s Society’s position on medical and technological intervention is clear: the family and the individual should be given all the information they need to be able to make an informed choice. I wholeheartedly agree with that. But medical professionals need to consider how they conduct the conversation, too. In a 2023 survey, 43% of people with hearing loss said they had experienced negative attitudes and behaviours from medical staff in the previous 12 months. This rose to 72% of British Sign Language (BSL) users.
Despite passing an act in 2022 to recognise BSL as a language of England, Scotland and Wales, the government has been woefully uncommitted to supporting the language; last year, it admitted that 11 out of 20 government departments had provided not a single BSL translation of any public announcement, publication or press conference in the previous 10 months. And despite the work of campaigners such as Rose Ayling-Ellis and Katie Littlejohns, funding for BSL lessons remains so meagre that many parents of deaf children can’t afford to learn to sign. Technology can certainly help deaf people, but it can also lead to the erasure of a community for those with hearing loss in the UK – one built on years of heritage and understanding that is rapidly being lost in an ever-evolving world.
It’s important to be hopeful and to welcome medical advances. But what many deaf people really want is much simpler: it’s funding for BSL classes for parents; it’s a commitment from the government to allocate more resources to those with hearing loss, and it’s visibility in the media and correct representation in culture – and, my personal fantasy, mandatory BSL lessons in all schools. This would encourage a lot more people with hearing loss to engage with their own community, but above all, it would cultivate a greater and more nuanced understanding of hearing loss across the nation. If the hearing world is listening, you’ll find that many deaf people would rather have support than miracle cures.
Oliver-James Campbell is a journalist and social media manager
