BDA and Rose Ayling-Ellis respond to gene therapy ‘cure’: “Deaf people are not sick or broken”

The British Deaf Association (BDA) and prominent deaf individuals such as Rose Ayling-Ellis have responded to media reports of a gene therapy ‘cure’ for deafness, with the charity rejecting the medical model of deafness and saying ‘nothing about us, without us.’

While the news that a British toddler has had their hearing reportedly restored after taking part in a gene therapy trial has been greeted as a ‘miracle cure’ in the mainstream press, the BDA and prominent members of the deaf community see the news as putting the deaf community at risk and going against the aim of celebrating and valuing deaf culture.

In a statement (which you can see in BSL here) the BDA said:

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.

In a post on Instagram, actor and Strictly winner Rose Ayling-Ellis asked whether “we will be the last deaf generation and end up in a museum somewhere?”

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A post shared by Rose Ayling-Ellis (@rose.a.e)

 

The BDA added in their statement:

“After decades of passionately campaigning for equality, we finally achieved a breakthrough in April 2022 with the passing of the British Sign Language (BSL) Act by the UK Parliament, which recognised BSL as an indigenous language of Britain and acknowledged 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.”

“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 – using signed language rather than spoken.”

 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.”