aAs someone who has been hearing impaired since I was a teenager, I read with great interest about the case of Opal Sandy – the 18-month-old British toddler who recently had her hearing ‘restored’ in a groundbreaking medical trial.
Opal was born with auditory neuropathy, which is caused by the disruption of nerve impulses traveling from the inner ear to the brain, leaving her completely deaf. But after taking part in what is being billed 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 experience the negative situations that people with hearing loss often face. She will not feel aware of her hearing, as I did as an adolescent, nor of the difficulties of meeting new people, such as having to ask them to repeat something over and over . She will not miss her job development because of her hearing loss. What is often necessary to get ahead in a business – openly participating in meetings, receiving verbal instructions and interacting with customers – are all affected by hearing loss. The impact this will have on her life is enormous.
Opal’s case is something to be celebrated. But it doesn’t have the profound impact on all deaf people that some hearing people might think. It is important to note that every case is different, and hers is very specific. This treatment only applies to a certain and rare form of deafness, meaning its implications are not as widespread as some headlines suggest.
But what may worry deaf people more is the debate surrounding Opal’s treatment. Prof. Manohar Bance, the trial’s lead investigator, has used words like “normal” and “cured.” It is said that deaf people “given hope”. For some in the deaf community, these types of words can be offensive. They suggest that people with hearing loss wander hopelessly and aimlessly through life, waiting for a magic wand that will cure them. Word choices like these make deaf people feel threatened. They fail to recognize that deafness is not a disease or that deaf people are not abnormal – we are mostly happy, successful and thriving individuals, and form a community with a language and culture of which we are proud. None of that needs to be “cured.”
Hearing people may be surprised at how many of us are already living successful lives: 12 million people, or one in five adults in Britain, have some form of hearing loss – and they are becoming increasingly vocal about ‘not saying sorry’ for who they are. For example, my great-uncle George has been deaf for more than 80 years. He lived a very fruitful life and is still one of the happiest people I have ever met. Nine years ago I stopped wearing my hearing aids and still live an amazing life full of ambition and strength – and with a much better understanding of the nuances of disability.
But the language used to discuss Opal’s case merely reflects what we often see in the press and popular culture. Very often, people with hearing loss are depicted in films and TV as comical, lonely or eccentric; think of “greased deaf man” 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 Although it was praised for its inclusion of deaf actors, it disappointed some deaf viewers with its false stereotypes about deaf people and its focus on the hearing characters. A Quiet Place II, the science fiction horror film starring Emily Blunt, was similar criticized because of the emphasis on the technology – a cochlear implant – as the hero, not the person. Above all, it’s the idea that technology is our savior that offends many people with hearing loss.
The position of the National Deaf Children’s Society about medical and technological interventions is clear: the family and the individual must receive all the information they need to make an informed choice. I wholeheartedly agree with that. But medical professionals also need to think about how they conduct the conversation. In a 2023 study43% of people with hearing loss said they had experienced negative attitudes and behaviors from healthcare professionals in the past 12 months. This rose to 72% of British Sign Language (BSL) users.
Despite the fact that a law was passed in 2022 to recognize BSL as a language of England, Scotland and Wales, the government is woefully uncommitted to supporting the language; last year, it admitted that 11 of the 20 ministries had not provided a single BSL translation of any public announcement, publication or press conference in the past 10 months. And despite the work of campaigners such as Rose Ayling-Ellis and Katie Littlejohnsfunding for BSL lessons remains so scarce that many parents of deaf children cannot afford to learn to sign. Technology can certainly help deaf people, but also lead to the destruction of a community for people with hearing loss in Britain – a system that builds on years of heritage and understanding that is quickly being lost in an ever-evolving world.
It is important to be hopeful and welcome medical advances. But what many deaf people actually want is much simpler: funding BSL lessons for parents; it is a commitment by the government to allocate more resources to people with hearing loss, and it is visibility in the media and proper representation in the culture – and, my personal fantasy, mandatory BSL classes in all schools. This would encourage many more people with hearing loss to get involved in their own communities, but most importantly, it would cultivate a greater and more nuanced understanding of hearing loss across the country. If the hearing world listens, you will find that many deaf people would rather have support than miracle cures.