Charlie Swinbourne: As genetic testing develops, will deaf people have to fight for our right to exist?

Posted on April 8, 2014

What does the term “child abuse” mean to you? Most people would think immediately of emotional or physical abuse. Sexual abuse. Neglect. What else? Well, how about allowing a deaf baby to be born?

This isn’t my question, but one asked aloud in an interview published in Saturday’s Guardian, with scientist Sharon Moalem, who has written a book about the dilemmas posed as it becomes easier for people to find out about their genetic inheritance – the disabilities or illnesses they might pass on to their children.

Moalem said: “Imagine if it turned out [my wife and I] were carriers for deafness and we could have had a child who was born deaf. What would we do? Is it child abuse to bring into the world a child who has that kind of condition?”

Over the weekend, many Deaf people expressed their concern at this statement on Twitter, and since then, Moalem has sought to clarify what he meant in the article, saying that he values human diversity and was expressing concern about the dangers of genetic testing:

However he meant it, what Moaelm expressed in his article was exactly the kind of question that might be asked by parents in the future as genetic testing becomes more commonplace. And the way they might look at the prospect of having a deaf or disabled child really concerns me.

What we’re talking about here is a child is deaf to some degree, which means that means their parents will have to adapt in order to communicate effectively with them.

Surely it’s pretty clear by now that deaf children are able to communicate equally as well as hearing children when their parents give them the opportunity (just take a look at this viral video of a two year old deaf girl, who has signed from birth, communicating with her mother at the dinner table).

So, my question to people who might consider the idea of bringing a deaf child into the world as being somehow cruel is this: what exactly are you saying the problem would be? The fact your child might be deaf? Or that you wouldn’t be able to learn their communication method? That you wouldn’t be able to find them the right school, and support them in their lives? Because, as the parent of a deaf child, you’d have that choice.

From my experience, with the right support, deaf people can become almost anything they want (even though we have to work harder to achieve it). My wife is deaf and she’s a teacher. My friend is deaf and he produces TV programmes. I know deaf people who lead charities and businesses. I know deaf actors and stand-up comedians.

I’ll go further than that. The most interesting, warm and communicative people I know are deaf. Yes, life isn’t always easy but in many cases, it’s actually that struggle, the journey they’ve been on, that adds to who they are, the story they have to tell, and their outlook on the world.

Whether you think something is ‘wrong’ with being deaf or not depends on how you look at it. Helpfully, in the deaf world we have these models. They’re ways of seeing deafness. The ‘medical model’ basically sees deafness as a negative, something that’s undesirable.Then we have the ‘social model’, which says that it’s the wider world and the way it presents barriers that’s disabling. And then there’s the ‘cultural model,’ which looks at Deaf lives and culture in a positive way.

To put this into practice, what do you think the problem is in this scenario: a deaf person who uses sign language goes to the doctor’s surgery. But they struggle to communicate with their doctor and leave with the wrong diagnosis. Is the problem that the person was deaf, or is it that the surgery didn’t book a sign language interpreter for the appointment (whether in person or online)?

Like I said, it’s all about the angle you approach the problem from. The social model would say it’s the approach of the doctor’s surgery that is ‘disabling.’

While we’re here, let’s also look at what might constitute some form of cruelty to a deaf child.

I know some profoundly deaf people who spent much of their education being forced to try and hear, and to learn to speak, and were not allowed to sign in the classroom. They now feel that they missed out on an actual education, on learning about things – rather than trying to do something they found impossible.

This might sound unbelievable, but I know people who had parents who didn’t know how to fully communicate with them. I mean communicate properly, through an in-depth conversation, not just “do you want a cup of tea?” The parents didn’t learn to sign, or acquire deaf awareness skills like speaking clearly and facing their child while speaking (so they could lipread them). This is why Nina Raine’s play Tribes (which I wrote about here), which dramatises a deaf boy being left out at home, made such an impact.

You could also look at the way that right now, decisions are being made in government and local authorities that are making deaf children’s lives much harder in areas like education, audiology, transport, social care, benefits and equipment (see the National Deaf Children’s Society’s cuts map here).

These are just some of the barriers deaf children can face. But crucially, they’re barriers in the hands of the rest of society – parents, educationalists, and politicians. They’re things that are in society’s power to change.  And they’re not reason enough – anywhere near reason enough – to suggest that a deaf life might not be worth living.

Because deaf people, despite those barriers, keep achieving. In education, at work, on a social level, as parents, as friends, as a community. Just think what more we could achieve as more of those barriers – that many are currently campaigning against – come down.

The prospect that in the future, as genetic testing comes in, an unborn deaf baby could be terminated because of deafness – that a parent would throw away a chance to bring that child up and learn to adapt fully to them and in doing so, experience every ounce of joy they could with a non-deaf child – to me, that’d be a long long way from common sense.

It’d be truly wrong.

Charlie Swinbourne is the editor of Limping Chicken, as well as being a journalist and award-winning scriptwriter. He writes for the Guardian and BBC Online, and as a scriptwriter, penned the films My SongComing Out and Four Deaf Yorkshiremen.

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