Richard Turner: What I learned from Ben Fletcher’s talk about living life to the full as a Deafblind person

Last Sunday morning, I found myself in a packed community hall in Holborn, Central London. I didn’t quite know what to expect as I hadn’t been there before, but I didn’t think that it would be that busy.

As my wife and I found our seats, a live band suddenly started playing on the stage and the atmosphere changed.

The entire audience suddenly got to their feet, clapping and singing along to the sound of ‘Good Vibrations’ by the Beach Boys. I’ve always loved that song!

Two young girls with beaming smiles were singing into their microphones on-stage like two angelic cherubs, to the delight of the audience.

Not used to such spontaneous gestures of joy, at first I felt a bit uncomfortable. But then after a while, I found myself singing along to the sounds of Pharrell Williams’ ‘Happy’ song and quite enjoying it. No-one seemed to mind that I was tone deaf or out of tune.

I was there to hear a talk by Ben Fletcher, who is thirty-five years old, called ‘See No Evil, Hear No Evil’ about ‘living life to the full as a deafblind person’.

The event was organised by Sunday Assembly, a group started by Sanderson Jones and Pippa Evans. They meet up regularly on a Sunday morning in a secular, inclusive environment.

Their motto is ‘Live Better, Help Often, Wonder More’ and they welcome everyone in a friendly, community-spirited environment.

It was also timed to celebrate Deaf Awareness Week. Lauren Harris, who is a friend of mine, provided the BSL interpreting. In her own words, she was ‘trying her best’. She is a volunteer at the Sunday Assembly and also Ben Fletcher’s girlfriend.

She was very expressive and visual with her signing on-stage, so she managed to make it both entertaining and funny. There was a sizeable deaf group there for the first time too.

After some poetry recitals and a short talk by a hard of hearing writer and poet, Ben began his talk.

With the help of Lauren doing the live voiceover, he talked about how he was born profoundly deaf to hearing parents in a village in Yorkshire called Denby Dale, which was so small, he was literally “the only deaf in the village”.

At first his parents didn’t know what to do for the best as there was no other deaf person in their family. This was in the 1980s and the medical professionals told them that Ben would have to learn to speak. They also fitted him with big clunky hearing aids, which proved to be useless as he still couldn’t hear anything.

His parents, who were both teachers, were determined to do their best by him. So they researched books on Deafness and Deaf culture. Since it was obvious that he wasn’t going to speak, they decided that he needed to learn BSL to communicate with others. They also campaigned successfully for him to have a BSL interpreter at his mainstream school.

He carried on like this at school with the support of an interpreter until one day he ended up in hospital, having been hit by a cricket ball.

 

The doctors there gave him and his parents the devastating news that he had a rare condition called Usher Syndrome, meaning that he was also going blind. They told him he would probably lose all his sight by the age of eighteen.

This came as a total shock to Ben and his parents and he was understandably devastated. He had lived his whole life as a Deaf person being very dependent on sign language and lip-reading, but now he was told he would have to learn Braille. He suffered from very low self-esteem and was bullied at school by other students.

Not knowing what to do next, his father suggested that he studied for his A Levels with a view to studying maths (he was a maths teacher). Ben did very well, getting 3 A grades at A Level and he was accepted onto a degree course in computing at York University.

He enjoyed it at first but by the end of his first year, he ended up suffering from burnout and RSI in his wrists through overwork. He couldn’t even use his hands anymore, which he totally relied on for communication.

He was told by the doctors to stop studying for a while, so he gave it up and went back to live with his parents. They suggested that he took a trip to India to visit his sister.

India was a total culture shock to him, but he was amazed at how calm and happy the people there were, even though they had very little. The experience acted as a real turning point for him, so he then decided to explore meditation and yoga.

He has carried on doing this throughout his life to help build up resilience against crises and give him a sense of calmness and focus.

He then decided to return to studying where he gained a first class Honours degree. IBM then offered him a job after graduation. He ended up being a Master Inventor there and made over twenty patents.

In 2008 he received the award of ‘Disabled Person of the Year’, which he described as being “the proudest moment of my life”. He now works at FT.com and lives with his girlfriend Lauren in London.

It was fascinating to hear Ben talk in an engaging way about the emotional and physical journey that he has been on and how he has overcome the many barriers that he’s faced.

The points he made about always staying true to yourself, fighting for what you believe in and finding your own community, came out very clear and I could relate to a lot of it from my own experience.

I have also found calmness and focus though trying to enjoy my life as much as possible in the present moment and like Ben, I have been lucky to have had the fantastic support from my wife and family, who were a huge support to me when I suddenly lost my hearing five years ago. Without them I don’t know how I would have coped.

After his talk, we all ended up singing a rousing rendition of Bjork’s ‘It’s oh so quiet’, which nearly brought the house down! This was followed by tea and homemade cake over a chat.

It felt just like going to church (without the religion) in terms of the happy community spirit. I’m glad I went.

By Richard Turner. Richard blogs at his own blog, Good Vibrations and works in hearing aid support for Action on Hearing Loss