The British Deaf Association (BDA), the Deaf-led membership organisation which represents the c90,000-strong Deaf signing community in the UK, has responded to media reports of a British toddler, Opal Sandy, whose hearing has reportedly been restored after becoming the first person in the world to take part in a new gene therapy trial.
The report comes during Deaf Awareness Week (6-12 May 2024), a week dedicated to encouraging Deaf children and young people to celebrate their Deaf identity.
There are over 50,000 Deaf children across the UK, over 90% of whom are born to hearing parents with no knowledge of sign language or the Deaf community’s unique history and culture.
The mission of the British Deaf Association (BDA) is to achieve recognition, inclusion and equality for Deaf people in Britain as a linguistic and cultural minority and to protect, preserve and promote British Sign Language (and Irish Sign Language in Northern Ireland).
The British Deaf community has been oppressed and discriminated against for decades. The BDA was set up in 1890 in response to the Milan Conference of 1880 which banned sign language from schools and traumatised generations of Deaf children who were punished (including physically) for using their first language, BSL.
After decades of passionately campaigning for equality, we finally achieved a breakthrough in April 2022 – the passing of the British Sign Language (BSL) Act by the UK Parliament, which recognised BSL as an indigenous language of Britain and Deaf people as a legitimate community under British law.
And yet the Deaf community is now once again being put at risk by another wave of medical intervention seeking to “solve the problem” of Deafness. It is deeply disappointing to see this persistent focus by the global medical profession on eradicating the world of Deafness and Deaf people, with no input from Deaf people.
At the turn of the millennium, the BDA and our allies were campaigning for the rights and interest of Deaf people to be protected under the Human Embryology & Fertilisation Act (passed, with amendments respecting Deaf input, in 2008).
At that time, Deaf people successfully won the argument that our specific position as members of a linguistic minority disabled only by audist (pro-hearing) social norms and structures needed to be taken into account and protected in law. Two decades later, we find that we must make the same arguments again to defend our humanity, against the development of medical technology and public policy that pathologises deafness and forces us once against to fight for our right to exist.
Deaf people are not sick or broken. We reject the medical model of deafness that reduces us to our disability. We are proud, healthy, active citizens who contribute to society and just happen to communicate in a different modality – sign language rather than spoken.
Our position is clear:
There must be a detailed and comprehensive discussion of the implications of medical interventions such as gene therapy before this type of procedure is approved for widespread use.
Wherever deafness is concerned, the Deaf community – of which the BDA is the Deaf-led representative member organisation, recognised by international authorities such as the World Federation of the Deaf and the European Union of the Deaf – must be central in this conversation. Nothing about us, without us.
Rebecca Mansell, Chief Executive of the British Deaf Association, said:
“We understand and empathise with the fear and anxiety that many hearing parents will experience when their child is first diagnosed as deaf. They receive messages from medical professionals telling them that their child is sadly broken, but they can be fixed with technology or medical interventions.
Parents tell us that sign language is rarely mentioned when a child is diagnosed, or only considered as a last resort long after other options have failed. There is currently no Government funding available for the families of deaf children to learn to communicate with their child, leading to widespread isolation, frustration, and language deprivation among Deaf young people. Our campaign, BSL In Our Hands, seeks to address this injustice.
Parents who want to sign with their children are simply not being given the support they need. There’s no national programme of support for Deaf babies and their families to learn to communicate with each other.
Parents are even today still being told NOT to sign with their children, with medical professionals (often with little understanding of language acquisition) advising that learning to sign will affect their child’s ability to acquire English. This is quite simply wrong, and is causing serious harm, stress and long-lasting trauma to Deaf children across the country.
At the BDA, we want the best for all Deaf children. Their families should be offered a full toolkit of communication options: reading, writing, signing (BSL or ISL in Northern Ireland), speaking. That has always been our position. Language input from birth onwards is vital for children’s lifelong linguistic, cognitive and personal development.
Gene therapy and cochlear implants do not and cannot replace language acquisition. There is a considerable gap between implantation and the time the CI is switched on and starts to work. That gap often takes place during the “critical period” of language acquisition, when Deaf children urgently need language input before it is too late. If they can’t hear, then they should be learning sign language.
We want the parents of Deaf children to feel safe, happy and supported. Children must be given the tools to learn to express themselves alongside their hearing peers.
Just as it would be cruel to forbid a hearing child from speaking, it is equally cruel in our view to forbid a Deaf child from learning to sign. Deaf children have a right to both signed and spoken language. It must not be not either/or.
That’s what the BDA is fighting for – a future where Deaf children and their families get the support they need to thrive, and where Deaf babies are no longer seen as “broken”.
ENDS
