Tuesday, 18 September 2012

Stem cell deaf breakthrough...what is your take on this?

Last week, an article written by Charles Swinburne for the Guardian following a scientific breakthrough showing the use of stem cells in improving hearing in animals, has raised a lot of furore in the deaf community....

"A huge breakthrough in deafness research was announced this week, when for the first time stem cells were shown to improve hearing in animals.

The prospect of using the treatment on humans is a few years away, but eventually it could be used to treat a condition called auditory neuropathy, which affects about 15% of deaf people in Britain. Since one in six people in the UK have some level of hearing loss, stem cell treatment could potentially change the lives of 1.5 million people.

This is just the latest development in treatment options for deaf people. There was a time when your only choice would be whether to wear a hearing aid or not, but nowadays more and more deaf people are choosing to have a cochlear implant. Where once there was hostility to the idea of implants, today they're much more accepted in the deaf world. That said, cochlear implants aren't for everyone (a subject I've written about before) and nor would stem cell treatment be.

Deafness is often thought of as a hidden disability, and consequently, most people don't know just how much variety there is behind the deaf experience. For starters, there isn't one "type" of deaf person, because levels of hearing loss range from mild to profound. Some people can hear just enough to use the phone, others depend on lip reading or use sign language. Of the 10 million people in the UK with some level of deafness, more than 6 million are of retirement age. Many find it hard to adapt to hearing aids (indeed, the majority don't wear them at all) and would almost certainly embrace the chance to hear in as natural a way as possible.

Meanwhile, 3.7 million are of working age. If you find it difficult to hear in an office or a social situation, stem cell treatment would be hard to turn down. It comes down to personal choice. Each individual would need to weigh up their lives, their deafness and what the treatment could offer their future. For many, the decision will be obvious. For others, it won't.

The group most likely to decline a "cure" are those who have been severely or profoundly deaf since birth, or from a young age. For members of the Deaf community (deliberately spelt with a big D), being deaf is not seen as something that holds them back. In BSL (British Sign Language) they have their own language, and they see themselves more as part of an ethnic group, sharing not only a common language but also a common culture, shared history and experiences. They're positive about being deaf in a way that people outside that world rarely understand.

Last year, a film by deaf filmmaker Ted Evans called The End presciently explored the idea of a "treatment" that made deaf people hear. The film charted the lives of its characters, revisiting them as the years pass. Some characters embraced becoming hearing while others struggled to adapt. At the end of the film (spoiler alert) one character realises that he is the last deaf person. The film struck a chord, and had the audience at Wolverhampton's Deaffest film festival in tears as the credits rolled as it showed how a culture could be lost.

I grew up in a deaf family, signing and speaking by equal measure. When we were around other deaf people, we found ourselves in a world where the humour in a joke was in the journey, told in a flicker of hands through the air, as if you could see exactly what had happened, without any need for a punchline. This is a world which is often more physical and warm than the hearing world. There is also a sense of belonging and togetherness that is hard to find elsewhere in modern life.

As I've grown up I've also been lucky enough to work with talented deaf artists, filmmakers, writers, and leaders in all walks of life. What we have in common is seeing the world differently as a result of our deafness, and turning that into a positive.

For people who find it hard to understand why anyone wouldn't want to be fully "hearing", you have to ask yourself: if you've lived your life one way from as long as you can remember, would you take the risk of changing it? Would you fundamentally change who you are later in life if you weren't sure you'd embrace that change? If you're used to perfect silence, would you take the risk of knowing what sound is, if you couldn't turn it off again?

For one person a treatment to make a deaf person into a hearing person would be a godsend, for another it's like wiping out a culture. Neither are wrong – they're simply different people, with different experiences, who live in different worlds.

One of the final lines in The End is delivered straight to camera by the last deaf person. He looks into the lens and says: "Deaf people are beautiful." As science develops, and whatever choices deaf people make, it should never be forgotten that they are."

I enjoyed this article especially because I share a lot of Charles' views. It is true that deaf people differ and thus, would have different opinions on whether to stay deaf or embrace change to become a 'functionally hearing' person.

I'd like to have your comments!

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