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!

Friday, 14 September 2012


It has been more than a week since the Paralympics Games has ended. Both the opening and closing ceremonies were attended to with great fanfare. But during the games, I struggled to find out about more deaf competitors as the Paralympics have different categories but none for the deaf. Which brings us to the topic: Deaflympics.

Here is an article from the Guardian website which outlines the fact that the Deaflympics existed long before the Paralympics (and a very interesting history)...

"There are many categories in the Paralympics, but none is set aside for deaf competitors. Deaf athletes can (and do) take part in the Olympics but for many the biggest sporting event in the world will take place next year – the 22nd Deaflympics in Sofia, Bulgaria.

Founded in Paris in 1924 as the International Silent Games, the event became truly international in 1935 when London hosted and the USA sent its first team – of two athletes – to join the Europeans. By the time the Stoke Mandeville Games started in 1948, plans were already afoot for a Winter Games for the Deaf (these were held for the first time in Seefeld, Austria, in 1949).

A century (and more) of deaf sport

The history of deaf sport goes back even further, as several European countries boasted deaf sports organisations by the late 19th century. In the UK the first deaf sports club was probably the Glasgow Deaf and Dumb Football Club, which was founded in 1871 (making it older than both Rangers and Celtic)

Across the channel the first French deaf sports club appeared in 1899 – an organisation for cyclists only. Then came a Parisian athletics club in 1911 and a nationwide athletic federation in 1918 (Fédération Sportive des Sourds-Muets de France). This federation hosted the first international deaf football match – France vs Belgium – in Paris in 1922. (There are some delightful photos of the natty deaf football uniforms on the current Commission Fédérale de Football des Sourds website).

The Glasgow Deaf and Dumb Football Club, the many French organisations, and the Stoke Mandeville Games illustrate three entirely different reasons to start separate deaf sports organisations: for charity, for culture, for cure. The fact that the French model of the "silent sportsman" was at the core of the Deaflympics is one reason why it has not merged with either the Olympics or Paralympics.

Charity, culture, cure

The Glasgow club was an initiative of the Glasgow Institute for the Deaf and Dumb, one of many philanthropic organisations set up by Victorians concerned about the poor and disadvantaged. Institutions and schools for the "deaf and dumb" were often run by religious organisations, and sports and exercise were introduced as part of an ideal of healthy "muscular Christianity" – the idea that physical and spiritual development were both necessary for a good life (as well as being a useful distraction from sexual urges and masturbation, of course).

As most of us following the Paralympics now know, the Stoke Mandeville Games were set up by Ludwig Guttmann to offer hope and physical therapy to injured servicemen, and later expanded dramatically into a site for international sporting excellence for people with a wide range of disabilities.

What makes the French organisations different is that they were founded not by concerned philanthropists or doctors, but by the deaf community itself, by men and women like Reubens Alcais, who was nicknamed the "Pierre de Coubertin of the Deaf" (de Coubertin was the French founder of the modern Olympic movement).

These were not sports for people with "disabilities" who needed charity (or cure), but cultural events where deaf culture could be celebrated, and deaf athletes could socialise. No special rules or conditions were introduced: all the sports in 1924 were conducted according to the standard Olympic rules (with visual rather than aural signals where relevant).

The use of sign language was symbolically very important in the late 19th and early 20th century, as this was a time when medical and social authorities were trying to suppress or eradicate "manualism" in favour of teaching all deaf people to speak and read lips – that is to assimilate into non-deaf society. Special sports events were one way to assert a cultural identity under threat.

As the International Committee of Sports for the Deaf said in 2001:

"The rules for playing each sport are not altered in any way for the deaf participants. This fact distinguishes deaf sport from sports played by other groups of people with disabilities. Deaf people are not disabled in any manner except communication – and this is only a disability when a deaf person is in a situation where hearing and speech are the primary means of communication. Deaf people consider themselves a culturally distinct minority group and it is for cultural reasons that the Deaflympics exists. That is, culture and not ability to play a game is the factor central to deaf people having the Deaflympics. Deaf people want to be among others who are deaf and talk in sign language."

The dispute over whether deafness is a culture or a disability is fraught, particularly when it comes to medical interventions such as cochlear implants or fertility treatment.

But whatever your opinion on the matter, it's clear it causes a big headache for deaf sports when it comes to funding. Unless they get access to the money available for disability sport, deaf athletes have to struggle to find sponsorship for their Games. After some financially difficult years, the deaf sporting community have been asking the Paralympics to "showcase" and support deaf sports.

Or maybe the sensible thing to do would be recognise that athletes use many languages, and simply adjust the Olympic regulations to allow for athletes who communicate using signs rather than words?"