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

The other Sunday 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.

Ben Fletcher blog header

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 Beachboys. 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.

Ben Fletcher talk blog_Lauren Harris

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.

Ben Fletcher blog_hearing aid

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.

Ben Fletcher blog_singing

My take on the Curious Incident play

Curious Incident blog_header

Last Saturday I finally got to see The Curious Incident of the Dog in the Night-Time play in the West End. I say ‘finally’ because I have wanted to see it ever since I first read Mark Haddon’s book a few years ago and loved it. I was actually due to see the play a while ago in the West End but it was shortly after the roof collapsed in the theatre, so I’ve waited until now to see a captioned performance of it by STAGETEXT at a different theatre, the Gielgud Theatre.

Because the book is written in the first person from the point of view of Christopher, the main character, I did wonder how they would be able to convey on-stage the unique way he sees the world, and whether it would work or not. We are led to believe that Christopher has Asperger Syndrome, a form of autism, so because he is telling us the story, we see things through his eyes and we are introduced to his magical, brilliant, but altogether confused, mind.

Curious Incident blog_STAGETEXT

Christopher is a fifteen-year-old boy, who is brilliant at maths and needs everything to be logical and organised to be able to be calm and focused. When they’re not, which is quite often the case, he becomes overwhelmed and terrified, unable to function in a noisy, chaotic world, which is full of things and strange behaviour by other people, which he can’t make sense of.

The way that this was done on-stage was actually very clever. Siobhan, Christopher’s teacher from his special needs school, narrated his story from the book that he had written, at the same time as the actual acting of his story was taking place. It worked well and it was really convincing.

Curious Incident blog_Siobhan

Apart from being a good story, which was very well acted, the other brilliant thing about this production was the stage set. My wife, friend and I had excellent seats in the Dress Circle, facing right onto the stage, with the two STAGETEXT caption units perfectly placed at eye level to either side of us, so I could follow the dialogue really well.

The stage was designed like a giant geometric grid. At various points throughout the action, it would light up with bright colours, flash lots of numbers up or project different sets such as Paddington Station or London streets. Watching the stage sets change, sometimes with walls closing in, opening up or escalators suddenly appearing in the tube station, was like walking into a magical, fantasy world as Christopher’s almost psychedelic imagination is unleashed upon us.

I thought the actor, who played Christopher, Kaffe Keating, was very convincing. I read an article in the programme afterwards by the author of the original book, Mark Haddon, which I thought was really insightful. He talked about how Christopher describes himself as someone who has ‘Behavioural Problems’ because that is the term medical professionals have used to describe him. He says that labels like that tell us very little about the person who has been labeled and a lot about the people doing the labeling. In other words, often well-intentioned people are searching for the correct PC term to use to label a disabled person, instead of treating that person like an individual and trying to find out what they are like by just talking to them and getting to know them.

Curious Incident_Christopher train

Disabled people are all different and unique, just like any other group in society, so if someone asks whether Christopher is a correct representation of someone with autism, we shouldn’t really be asking that question. After all, he says, we wouldn’t ask if a character, who is a cellist, lesbian or archbishop, for example, are representative of those types of people, so why should we assume that people with a certain disability are representative of all people with that disability either?

The irony is that Christopher is labelled as having ‘Behavioural Problems’ when the adults around him, such as his father and mother, are dysfunctional and cause Christopher a lot of pain and suffering with their own behaviour. His father, for instance, played brilliantly by Nicholas Tennant, is unable to cope with Christopher or communicate well with him, so he goes from lying about his mother leaving him to try and save his feelings to lashing out at him from time to time through sheer frustration. Similarly, his mother left him to run off with the neighbour to London, partly because she is unable to cope with Christopher and deal with her emotions.



Christopher can talk to people who aren’t close to him, though, such as his teacher Siobhan, as well as his kindly old neighbour Mrs Alexander. He also seems to have a special bond with animals, which he doesn’t have with people as he lacks empathy for them and can only see things in a simple, logical way. He obviously loved his neighbour’s dog Wellington, who we see has been brutally murdered at the beginning of the play. He also loves his pet rat Toby, who he insists on taking with him on his terrifying trip to London to try and find his mother.

I don’t want to give any more of the plot away for anyone who still hasn’t read the book or seen the play. Needless to say I thought this production was brilliant. It was very well acted and watching it was a real delight because the visuals, special effects and stage set were just incredible. It was definitely worth the wait. If you haven’t seen it yet, I’d definitely recommend it!

Curious Incident blog Christopher


February’s highlights: Access to the arts in action

Access in Action blog_Trafalgar set

I’ve been to see some great plays and art exhibitions this month, which have proved to me once again how important great access to theatre and the arts is to deaf and disabled people.

At the beginning of February I saw a performance of Jamie Lloyd’s production of The Homecoming, which was captioned by STAGETEXT at the Trafalgar Studios in London. This is a Harold Pinter play and while I found the actual play pretty weird and disturbing (which I think it’s meant to be as it’s supposed to be shocking and thought-provoking), the access provided by the captioning was excellent.

We were seated close to the action on stage and I could read the captions really clearly as the caption unit was placed directly above the stage. I didn’t have to keep moving my head from side to side or up and down like watching tennis at Wimbledon to read the text and follow the action at the same time.

This is one of my favourite places to watch a play. The tickets are only £15 each on a Monday night, so it makes it accessible and inclusive to all. The audience is also quite diverse, with young and older people alike all sitting together in a cosy, informal atmosphere. There’s no elitism about the place. It was packed and everyone looked like they were having a good time.

It was a shame that the hearing loop didn’t work, even after I swapped it for another one during the interval. But it didn’t spoil my enjoyment of the performance in any way as I could still hear most of it and I could read the captions very well from where I was sitting.

My experience of watching Shakespeare’s As You Like It at the National Theatre about a week later was completely different, though. This was also captioned by STAGETEXT. When I first took my seat, I saw that there was a very elaborate stage set, designed like a large modern office, complete with desks, chairs and computers.

Access in Action blog_National office set

Two caption units were placed to the far left and right of the stage, instead of above the stage. At first, I wondered why they had been put there because it made it quite difficult to follow the captions and the action on stage at the same time when I had to keep moving my head from the caption units at the sides to the stage where the actors were.

It all became clear after a while though when suddenly, the whole set, complete with upside down chairs and tables was lifted and suspended in the air above the stage. The chairs and tables, which were hanging from the ceiling, had been transformed into a forest and they were now meant to be trees. The rest of the action took place in this atmospheric, misty half office/forest setting.

The effect it gave was really creative and different. I’d never seen office furniture transformed into a forest before, but it seemed to work somehow. From an access point of view though, it wasn’t ideal as although I could see how it would be impossible to have put the caption units above the stage with such an elaborate set, it meant that anyone relying on the captions would either have to follow the captions or watch the action on-stage, as it was impossible to do both at the same time.

Access in Action blog_Forest

Thankfully, the hearing loop was crystal clear, so I still managed to follow the dialogue and enjoy the play. The acting was brilliant, the plot really funny and the set design amazing. I also think that putting it in such a modern setting with the actors dressed in modern clothes made Shakespeare seem much more accessible and relevant to today’s audiences.

It made me wonder, though, whether theatre set designers should incorporate decisions about access right from the start when they are planning their sets. Later, I asked STAGETEXT about this and they told me that it can be difficult to find the perfect placement for the caption units across a range of different venues and complex sets. They said that their Theatre Programme Manager works directly with venues to ensure that the units are as close to the action as possible. But with theatres that have their own captioning equipment, they have less of a say where the units are positioned than they do if they are captioning it themselves.

Also, with some of the West End shows, STAGETEXT has to mark out an allocation of caption user seats as soon as the dates go on sale and this is often before there is even a set design in place for the production. This explains why sometimes the caption units are not in the ideal position for the caption users. I have to say though, that the majority of times I’ve seen a captioned performance, the experience has been excellent and fully accessible to me.

The access was really good at the exhibition I went to with my wife yesterday at the National Gallery too: http://bit.ly/1P9yDQw. It was a major exhibition of the early 19th Century French artist Delacroix’s paintings, whose work inspired the younger Impressionists and modern artists who came after him.

Access in Action blog_Delacroix National Gallery

I asked for a hearing loop for the recorded audio guide of the exhibition. The staff there were really helpful and made sure that the loop worked before I went into the exhibition. It was crystal clear and easy to use.

I didn’t really know much about Delacroix before or how important an artist and influence he was. The exhibition describes him as ‘The Father of Modern Art’ with a quote from Cézanne saying “We all paint in Delacroix’s language”. In the exhibition we saw original paintings by Delacroix alongside others by such famous artists as Van Gogh, Gauguin, Renoir, Monet and Cézanne, who had all been inspired by his works.

Access in Action blog_Van Gogh flowers

What I love about these Delacroix paintings is that they are very colourful and it’s obvious that he painted them with a lot of passion and energy. He was one of the first artists to unleash his imagination and express on canvas the powerful emotions and ferocious intensity that were building up inside him like a volcano, whether it was in a still life painting, landscape, portrait, historical battle or religious scene.

I really loved his North African paintings in the exhibition, which showed scenes of rich luxuriant landscapes and architecture, bright colours, brilliant sunlight and exotic animals such as lions and tigers. These were all new and fascinating to a man such as him coming from Paris. The Delacroix exhibition is on until 22nd May so if you haven’t seen it yet, I would highly recommend you go and check it out!

Access in Action blog_Delacroix lion


The Switch-On

Richard_Switch on photo

The other day I watched a really good TV documentary. I could really identify with it through my own personal experience of getting a cochlear implant.

It was called ‘The Switch-On’ and it was shown on the Scottish BBC Alba channel. Although it is filmed in Gaelic, it has English subtitles. You can find the link here

It follows the lives of five cochlear implant patients at Crosshouse Hospital in Kilmarnock from their first assessments to their operations, switch-ons and then their lives post-switch-on. Andy Palmer from ‘The Limping Chicken’ deaf blog has just written a very good review of it too: here

Andy highlights the fact that this documentary tells cochlear implant stories you don’t see in viral Facebook or Youtube videos of switch-ons with young women bursting into tears when they can hear for the first time or babies breaking into a cute smile.

It may be some people’s experience of their switch-on but it wasn’t mine and it wasn’t for many other people, like the people shown in this documentary. I was just so relieved it had worked and thankful that I could hear again!

This is the first time I’ve seen anything that presents a more realistic, balanced picture of what it’s like for many people during and after their switch-on.

The outcome varies a lot between people depending on many factors such as the surgeon’s skill, how long they have been deaf, their knowledge of sound, speech and ability to lipread. The programme showed how very different the expectations and outcomes were for the different candidates.

It’s all about managing your expectations. I remember that my expectations were very low. I didn’t want to get my hopes up too high just in case it didn’t work and I couldn’t hear anything.

It was definitely worth the risk though and it had taken me a long time to get to that point. At the time, my hearing had deteriorated to such an extent that I was struggling to communicate with anyone without them having to write it down and my hearing aid was not giving me any benefit. I felt I had very little to lose.

Thankfully, the operation was a success and immediately after the switch-on, I could hear much better than I could before. It met my expectations and more. I could have a conversation with my wife again and after a while speak to my mother on the phone after five years and listen to music again.

I have to be realistic though. I still struggle to hear with it at times, especially when there is a lot of background noise. I still have to rely on captions to follow TV programmes, films and theatre performances. I have also had a few times when the processor has failed and have been left completely deaf over the weekend until I could get back to the hospital to get it fixed. I am still deaf without it.

Cochlear implants are not magic bullets to restore hearing. I have met some people whose cochlear implants have either failed completely or not turned out as well as they had expected. For many people it is a long process involving months of therapy after switch-on and for a few others they still struggle with them, even years later. They are successful for most people though.

I can honestly say that my life has been transformed with my implant and it has really helped my confidence. I am now working again after I had to give up my job when I lost my hearing, I am socialising again and I can communicate much better with everyone around me.

I could really relate to Mark in the documentary, a forty-eight year man working as a sign-fitter. He had suddenly lost his hearing over a period of ten months and not only struggled to communicate with anyone, but he had lost his social life, was on medication for depression and was at risk of losing his job from the company where he had worked for thirty-two years.

It is ridiculous that his boss was considering sacking him if the cochlear implant didn’t work because being deaf does not affect your ability to put up signs. All his boss needed to do was to make a few reasonable adjustments to help him do his work. Thankfully, his cochlear implant operation was successful and he kept his job.

Mark was like a different person after his switch-on. He talked about how amazing it was to be able to hear his dog walking and breathing again, everyday sounds that most people take for granted. He got his life back, which was brilliant.

We also saw Rona, a sixteen-year old girl, who lost her hearing three years before when she was a singer in the local choir and had her whole life ahead of her. She had lost a lot of her confidence and didn’t want to go to school and mix with her friends. Her mother said that she had lost her independence, which was particularly hard for a teenage girl.

We saw the switch-on of Rona’s second implant, which was a success. Afterwards, it was great to see her going to see her favourite band, One Direction, in concert with her mum. When she found out that the band’s management were so inspired by her story that they invited her backstage afterwards, she was overcome with tears of emotion. Seeing her smiling face as she took selfies with the band and they hugged her, I felt so happy for her. She’s now planning on going to university, which is brilliant.

Then there was Craig, a seventy-five year old man, who had become profoundly deaf through progressive hearing loss over many years. He couldn’t have a normal conversation with his wife anymore without her writing it down and it was really sad to see him struggling to chat to his grandsons in the garden.

I meet a lot of elderly people, who struggle to cope with their hearing loss. Many have arthritis and sight loss too, and some have dementia. It is very difficult for them and their families to adapt to the sudden change as their hearing gets worse and they feel increasingly isolated.

Unfortunately Craig’s switch-on was not as successful as he and his wife had hoped and he still struggled to understand what she was saying to him. It took a lot of perseverance and months of therapy before his hearing got much better. Thankfully, it did and it was obvious from watching him talk to his wife and grandsons how much better he could hear and communicate with them.

We’re told in this programme that only 5% of people who could benefit from a cochlear implant actually receive one. That is a real shame. I think that more people like Craig over the age of sixty-five would really see the benefit of getting a cochlear implant, but few of them actually get one.

I’m glad this programme showed a more realistic side to the story we often hear about cochlear implants being ‘miracle cures’. It’s important for anyone considering one to research it well, talk to other people and manage their expectations. But as Mark said in the programme, I think that everyone, who would benefit from one, should have the chance to get one, not just a select few.

The Twelve Days of Christmas at the Chickenshed: a magical, inclusive adventure

Twelve Days of Christmas blog header

I never imagined that the Twelve Days of Christmas carol could take on a whole new meaning until I saw the Chickenshed theatre company’s performance of it in North London last week.

I went with a group of friends to the Chickenshed to see this captioned and BSL interpreted Christmas play. The storyline focuses on four children’s quest to find the fifth gold ring in the Twelve Days of Christmas carol, and during their journey, they come across all the characters from the carol in various scenes, such as two turtle doves and three French hens, in a crazy Alice in Wonderland type of adventure.

The performance was so colourful and surreal that at times I felt like I was in the middle of a gigantic bizarre Acid trip. The sheer energy and powerful emotion shown by the actors on stage and their huge supporting cast was electrifying and thrilling to watch.

Twelve Days of Christmas blog_dancers-1

The set was also highly creative and magical. It was designed like a giant Willy Wonka-type slot machine, with the different numbers for the Twelve Days of Christmas flashing up to let the audience know when we had reached a specific number from the Twelve Days of Christmas.

This was definitely a unique production with a twist. None of the characters in the carol were how I remembered them or imagined them to be. For instance, the two male French hens spoke English with a French accent and confessed that they couldn’t speak French. The ’eleven pipers piping’ were shown as eleven plumbers dressed in boiler suits fixing the pipes in someone’s bathroom while he sat in his bathtub. Hilarious!

Twelve Days of Christmas blog_pipers

I loved the crazy singing and dancing too. In one scene there was a ‘Strictly Formation Dancing’ ballroom dancing contest going on where the contestants were all amateurs and none of them could dance very well, so it all looked messy and chaotic, but very funny. Other scenes had circus acrobats, beautiful singing and fast, energetic dancing as the cast threw themselves across the stage.

What the Chickenshed really excels in though and makes them truly unique, is their totally diverse and inclusive ethos, which came across in bucket-loads in this production. Careful planning and attention to detail ensures that everyone in the audience and cast are included and made to feel part of their unique community.

They have a cast of more than 800 people in four different rotas, which includes children and adults of all ages, disabilities and ethnic backgrounds. No-one is excluded. In some scenes I saw about a hundred children, teenagers and adults crammed onto the stage. They all looked like they were having a great time. It was brilliant to watch and feel part of it.

Twelve Days of Christmas_Strictly scene

As well as being captioned in-house by the excellent captioner Beverley, there were two BSL interpreters on stage the whole time, who integrated their signing fully into the performance and interacted with the actors to tell the story in an effortless, seamless way. Their signing was beautiful to watch and because it is such a visual language, it added something extra to the performance, as well as making it totally accessible to the deaf people in the audience.

The show built up to a fabulous, show-stopper of a finale involving all the members of the cast on stage singing and dancing along to the lyrics of the Twelve Days of Christmas carol. The Rayne theatre, which was packed that night, was rocking as the audience clapped along to the lyrics of the song with the cast. At the end the entire cast were signing the words ‘A Partridge in a Pear Tree’ and as I looked around me, I saw children and families in the audience copying them and signing the lyrics. It was a heartwarming experience.

As I left the theatre that night, I had the lyrics ‘And a partridge, a partridge, a partridge in a pear tree’ ringing in my ears. Like a constant earworm that refused to go away, I had that tune ringing in my ears for days afterwards. That carol will never sound the same again.

Merry Christmas everyone!

Twelve Days of Christmas blog_Jamaican milkmaid

Wine tasting and fundraising: a perfect combination!

When I first found out about a wine tasting event for Action on Hearing Loss, I immediately thought this was my kind of event! I don’t claim to be any sort of wine expert, apart from enjoying drinking it, but finally here was a fundraising event that even I could manage.

Wine tasting blog_Header

My usual experience of wine is buying whatever is on offer at my local supermarket, which is invariably hit and miss! I also liked the fact that this event wouldn’t involve me having to spend months training to run a marathon like my wife or having to climb up Mount Kilimanjaro. All I had to do was turn up, donate and enjoy a fun evening of drinking fine wine with great company. Right up my street!

So last Thursday evening I went along with my wife Joanna to the event in a wine bar in the beautiful, historic Leadenhall Market in the City. When we arrived there were quite a few people there I knew and it seemed a friendly, mixed group. There was also a BSL interpreter there to make it fully accessible for deaf people, and she was brilliant.

Wine tasting blog_signer

After a welcoming glass of Prosecco, Neil, who was taking us through our wine tasting journey, introduced himself and started to talk to us about the first wine. Over the course of the evening, we tasted lots of white wines from different wine grape varieties, followed by lots of different red wines. He talked us through the history and descriptions of each one and its country of origin.

Thankfully, he told us we were supposed to throw out what was left of each wine in our glass before we moved onto the next one, as it was getting difficult to keep up!

Neil told me afterwards that he had worked in the wine trade for many years and had a real passion for wine, which had taken him to many interesting places around the world. He was involved in fundraising for deaf children through the NDCS but he wanted to fundraise for adults and share his passion and knowledge about wine with other people, while having a fun evening, at the same time. He approached Action on Hearing Loss about his idea of having a fundraising wine tasting event for them, and was delighted that they were really enthusiastic about it too. So that’s how the idea started.

Wine tasting blog_group

Neil also wanted to bring a group of people together without any barriers to enjoyment. He wanted it to be a fun, fully inclusive event. Anyone can enjoy wine tasting regardless as you don’t need to have your hearing to appreciate the tastes, smells and textures of the different wine varieties. The most important senses you need for it are those of taste and smell.

Many of us were also surprised at how much we enjoyed wines that we had dismissed before, perhaps due to our own prejudices about them or previous bad experiences of them. Neil had chosen the wine selection very well, I thought, and I was amazed to find that I enjoyed tasting most of them.

Wine tasting blog_sign interpreter

I was particularly surprised how much I enjoyed the taste of the German Riesling. I had images of my parents drinking cheap Riesling wine in the 1970s, accompanied by an Abba soundtrack and flared trousers. Very retro! I remember the taste being particularly sweet and cloying, but the Riesling we tasted last week was crisp, dry and very drinkable.

I thought that Neil’s descriptions of the different tastes of the wine were really good too and they showed the complexity and depth of the flavours and colours of the different wines. I have never really got it when a wine expert talks about a wine tasting of damsons, plums or blackberries before but when he described it, I felt I really could start to appreciate the flavours.

I was also surprised to find out that I had enjoyed the Romanian wine, which I thought I would not like at all. Neil said that Romania was one of the biggest wine producing countries in Europe, which I had no idea about, and the wine we tasted was really subtle and pleasant.

It was great to chat to some really nice people in a friendly, relaxed atmosphere that night. Well done to Neil and Maddy from Action on Hearing Loss for putting in the hard work to organise such a great, fun event while raising money for the charity too. I hope there will be more events like this in the future!

Wine tasting_final picture


Time to act now on hearing loss

I felt honoured to be invited to the launch of Action on Hearing Loss’s ‘Hearing Matters’ report recently at the House of Commons. It was launched at a cross-party reception for MPs hosted by the MP Lillian Greenwood, a strong supporter of Action on Hearing Loss and advocate of their ‘SubtitleIt!’ campaign.

Lilian Greenwood

It was great to meet other deaf and hard of hearing people there who I have connected with on social media and who share a passion for campaigning on important issues affecting our lives such as improving the provision and access of subtitled video-on demand and catch-up TV services and trying to reverse NHS hearing aid cuts. It was also great to meet Lilian Greenwood and have a really good chat to the Labour MP Steve McCabe.

There are still so many barriers to access for deaf and hard of hearing people to lots of different areas in society, as well as employment and education and continued discrimination. We need to keep raising awareness of these issues among the wider public and campaign to improve them if we are to make a difference and strive for equality and inclusion in society.

The ‘Hearing Matters’ report is an important report, which covers lots of different areas related to hearing loss. It highlights the fact that by 2035 there will be one in five of us living with some form of hearing loss compared to one in six now.

Steve McCabe

They highlight how important it is, therefore, for our national government to work together with local authorities to implement local, community-based action plans to support people living with hearing loss.

I think it is wonderful that deaf and hard of hearing people from around the country have come together and got involved in Action on Hearing Loss’s recent campaigns, such as the ‘SubtitleIt!’ campaign and the campaign against NHS hearing aid cuts in North Staffordshire. It is amazing what we can all achieve together when we feel passionate about a common cause and empowered to do something about it.

Action on Hearing Loss is also involved in carrying out lots of medical research on hearing loss and tinnitus. I am particularly interested in what they are doing with the cochlear implant manufacturer AB to improve cochlear implant technology. From my personal perspective as a deafened adult, I feel incredibly lucky to have received a cochlear implant last year. It has been truly life-changing for me!

Without it, I would not be able to communicate with my family and friends like I can now. It has also given me the confidence to find work and do the job I’m doing now, which I feel really passionate about.

As our society ages, the problem of age-related hearing loss among the over 65s will only get worse and we need to take action and address it now before it is too late. We need to have more health screening programmes for the over 65s. We also need to think in a holistic way about how we can provide more community-based projects to support people living with hearing loss.

Hear to Meet

For instance, I work on the ‘Hear to Help’ service in my local Borough of Redbridge, run by Action on Hearing Loss. We support people living with hearing loss in my local community by showing them, their carers and family members how to maintain and care for their NHS hearing aids and how to communicate effectively with someone with a hearing loss.

I used to be a volunteer on this service for over four years before I was employed by them and I have seen the numbers of people we see grow over those years. It is still mainly run by trained volunteers, many of whom are hearing aid users themselves. As well as running regular drop-in hearing aid clinics, we also visit people in their homes, care homes and hospitals in the community.

Many older people suffering from hearing loss feel vulnerable and socially isolated. They find the support we give them invaluable. We help them get better use out of their hearing aids when they may be reluctant to wear them because they are not used to them or they don’t know how to maintain them.

We often see the same clients coming back to us regularly and telling us how much better they feel since we have helped them with their hearing aid problems.

Most of the clients we see have moderate hearing loss and before they had their hearing aids, they were struggling to communicate with their family and friends and felt reluctant to leave the house and socialise with other people as they felt isolated and vulnerable, missing out on everyday conversations. I can see how much they have improved and gained in confidence after accessing our ‘Hear to Help’ clinics.

This is why it is so important that older people living with hearing loss feel supported in their local community and are not denied the basic hearing aids they need on the NHS. North Staffordshire Clinical Commissioning Group (CCG) has become the first CCG in the country to stop providing hearing aids to most people. Under the CCG’s new policy, people with mild hearing loss will no longer receive hearing aids and people with moderate hearing loss will have to pass an eligibility test to get them. Four other CCGs are proposing to follow in the steps of North Staffordshire, meaning the cuts could affect over 145,000 people.

Kate Green

These people have paid their national insurance all their lives and it is cruel that they are denied access to hearing aids when they really need them, which results in them being cut-off from their friends and family and excluded from society.

It is a very short-sighted approach, aimed at saving paltry amounts of money, but over the long-term it will end up costing our already overstretched NHS much more as a result of increased mental and physical health problems brought on by their untreated hearing loss, resulting in reduced wellbeing and a lower quality of life.

I really hope that more people read this important report and share it widely. We all need to take more action to improve equality and inclusion for deaf and hard of hearing people in our society.

Instead of cuts to funding and NHS hearing aid provision, we need more community-based support services and holistic approaches to stop more problems building up in the future as a result of not planning properly for our rapidly ageing population and adopting short-term thinking.

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Link to Action on Hearing Loss ‘Hearing Matters’ report:



Dalai Lama at the O2: compassion and the foundation of wellbeing

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I never would have imagined myself going to see the Dalai Lama a while ago. If you had mentioned the idea to me even five years ago I’m sure I wouldn’t have been interested. I imagined the Dalai Lama as being a mystical, God-like person with a deep spirituality but far removed from my own world, much as the North Pole is from the South Pole.

Well no doubt he is living in a completely different world to me and that of most people I know but I think I have changed a lot as a person over the last five years and perhaps I have also become more open to new ways of thinking and being.

So when my stepbrother mentioned that the Dalai Lama was going to give a public talk at the O2 arena in London a few weeks ago and asked me if I wanted to go along with him, I immediately said yes. His talk was called ‘Compassion: The Foundation of Wellbeing’ and it was to be followed by a Q&A session with the audience afterwards. I was really looking forward to it.

When we arrived at the O2 that day, there were huge crowds of people queuing outside to get in. It was obviously a very popular event. When we took our seats, which were not far from the main stage, I looked around the arena and saw hundreds of people taking their places. It was absolutely packed.

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I used the hearing loop, which was excellent, and there was also a BSL interpreter signing at the side of the stage. The access would have been fully inclusive if they had also provided speech-to-text reporting, but I managed to follow it well with the hearing loop.

The stage looked beautiful and serene, with images of snow-capped Tibetan mountains being projected onto a screen in the background. After a very touching musical intro with a large group of Tibetan children dressed in brightly coloured traditional costumes and a musician serenading the Dalai Lama with Tibetan welcome songs, he began to address the audience.

Dalai Lama wih Tibetan children in O2

He talked about lots of different things but kept bringing it back to his key messages about how having compassion for others will make you happier and enjoy better health.

He described how there are seven billion people in the world, each facing their own personal emotional and physical difficulties. He said that despite differences due to culture, race, religion, gender, education, disability, sexuality or age, underneath it all, we are all fundamentally the same.

He said that we are all human beings, who came from our mothers and have the same brains, hearts and organs. There is too much emphasis on differences and divisions between different people, instead of treating people equally, as we are all the same underneath.

Negative emotions such as fear and distrust of others resulting in divisions lead to all sorts of problems such as bullying, abuse, oppression, conflict, war and killing others. We can see this happening all around us in the world today, whether it is brutal terrorist attacks in the Middle East, senseless shootings in the US, online bullying and trolling on social media or different groups of people being treated unequally and discriminated against in our own country.

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“Compassion is the basis of happiness and good health”, he said. He also spoke about how the key to a more peaceful, happier world was education and that we must educate ‘Generation 21st Century’ young people to be more compassionate towards others.

He said that the whole of humanity has the responsibility to build a happy humanity because most of the problems in the world are man-made. “You are your own master”, he said.

To me, although you may think that this is an oversimplified and simplistic view of today’s world, there is a lot of truth in it. All over the world we see negative images and hear stories everyday of people killing, abusing, torturing or attacking others because they believe those people are different or inferior to them.

People are creating divisions everywhere, because they belong to a different community or culture, they have a disability, they are not as well educated or they are poor or disadvantaged. It is all around us and seems to be getting worse with the constant onslaught of public criticisms or negative attacks being made against people on social media or in the press.

I really don’t like all these divisions or labelling people who we feel are somehow different to ourselves. I agree with the Dalai Lama that we have a responsibility to be more compassionate towards other people, to listen to their concerns more and always treat them with equality and respect. I abhor discrimination of any kind.

Dalai Lama_Everyone smiles

He also spoke about personal happiness, health and inner peace. His message was that if we are constantly searching for happiness in external, material things, we will never find it. There will always be something else we want to buy or something more exciting that we want to experience, so we will be permanently restless. If, on the other hand, we can learn to be mindful and just focus on our inner peace, we will become much happier within ourselves and will also enjoy better health.

I think the Dalai Lama is a very wise man, who speaks a lot of simple, universal truths about humanity. He is a Buddhist but he respects and values people of all religions, cultures and faiths. He comes across as being a very peaceful, respectful man with a very playful sense of humour. He clearly enjoys the company of others too.

At the end of the talk, one of the contestants from ‘The Great British Bake-Off’ TV series came onto the stage and presented the Dalai Lama with a cake he had made for him to celebrate his 80th birthday. It was a surreal moment but a really touching tribute. The audience cheered and sang ‘Happy Birthday’ to him in unison. I came out of the O2 arena feeling really happy and uplifted. It was a great event.

Dalai Lama Sept 2015_cake

Latitude 2015: much more than music!

Latitude blog header

The last music festival I went to was Glastonbury in 1997. I went camping with a group of friends and despite being covered in mud and not being able to have a shower all weekend, we had a fantastic time.

I was a lot younger then with a lot less responsibility and a bit more stupid! I’ll never forget my excitement at watching Radiohead and The Prodigy playing live to thousands of people and having a really great time.

But after I lost my hearing a few years ago, I couldn’t see any point in going to a festival anymore. I thought that if I can’t hear the music, it would never be the same again. I still had the memories of the bands and songs I loved in my head though even if I couldn’t hear them anymore.

Since I had my cochlear implant operation a year ago, I was wondering what it would be like to go to a festival and hear live music again. A friend of mine, Carole, then told me about Latitude Festival in Suffolk, which was held every July. She also told me that she would be involved in working with the BSL access at the event.

Latitude festival_crowds

The festival was made accessible for deaf and disabled people by the organisers, Festival Republic. Also a charity called ‘Attitude Is Everything’ were involved in making the festival accessible and inclusive.

As well as access rate tickets, there was an accessible camping area and volunteers there to support disabled people when needed, providing information and recharging points for mobile phones, cochlear implant batteries and wheelchairs. There were also accessible viewing platforms provided for disabled people and their PAs/carers to watch the performances.

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So, I decided to go there with my wife Joanna. It had been a long time since either of us had camped and we didn’t know what to expect. But we were well looked after right from the minute we arrived, with an accessible check-in area and disabled parking close to the camping area. Two friendly volunteers even carried our stuff for us and put our tents up!

Latitude Festival is set in the stunning Suffolk countryside with a beautiful lake, acres of wild woods and open fields with sheep painted bright pink especially for the festival! It is a much smaller festival than Glastonbury and it had a very creative, colourful vibe to it, with lots of different stages, bars and tents spread around the whole site, which took on a magical appearance at night.

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There was also a huge diversity of music, literature and performance art on offer. It had a really wacky, unpredictable feel to it. We often stumbled upon some really random, crazy stuff going on in the woods or by the lake. I loved it!

Some of the musical performances and comedy acts were interpreted into BSL. I saw a BSL interpreted performance of a live band playing on my first night, which was good, although I think it would have been better if the interpreter had been allowed on the main stage instead of on the viewing platform in the middle of the field. I also wish that there had been more BSL interpreted performances as they seemed to be quite limited.

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I enjoyed listening to the writer Hanif Kureishi reading out one of his entertaining short stories in the Literature tent, followed by a Q&A session with the audience there about creative writing. I have always enjoyed his novels and films ‘The Buddha of Suburbia’ and ‘My Beautiful Launderette’. The tent was packed with people but I was really disappointed to discover that the hearing loop there was not working so I had to rely on my cochlear implant. I managed to catch the gist of what he was saying but had to ask my wife to fill in the gaps.

It was also a shame that there was no speech-to-text reporting or captioning provided at Latitude at all for deaf and hard of hearing people. I think a talk like this and some of the live comedy shows would have been much more accessible with speech-to-text reporting, so I hope STAGETEXT will consider providing this access next year.

I was really looking forward to seeing The Charlatans, one of my all-time favourite Manchester bands. Well they definitely didn’t disappoint! I watched them from the viewing platform in the BBC Radio 6 music tent and they were fantastic. They played all their old songs and sounded just like I remembered them from twenty years ago!

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It was great to be amongst lots of disabled people in wheelchairs or mobility scooters all letting their hair down and enjoying themselves with their families, friends and PAs on the viewing platform.

My other musical highlight was watching The Vaccines play live on the Saturday night. This is a fairly new band I’d never heard before but they were fantastic! The atmosphere was electric in the music tent with the lead singer throwing himself frenetically around the stage and into the audience at one point. I could feel the energy and intensity of the band’s performance, as well as sense the vibrations of the drums and guitars from the viewing platform.

Latitude blog_The Vaccines

One of the best things about the weekend for me was meeting lots of disabled people there, who were just enjoying themselves without having to worry about barriers to access or discriminatory attitudes from some other people. I met a great bunch of people and hope to keep in contact with some of them.

I was so glad I decided to go to another festival again after all these years. Latitude was brilliant! I don’t think I would have gone without the great access and support provided there though. The diversity and inclusion was great. I’m already looking forward to going back next year and will hopefully bring some more deaf friends with me too!

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Come and meet cochlear implant users

Cochlear implant candidates
It has been just over a year since I had my cochlear implant switched on. If has made a huge difference to my life, enabling me to hear much better and communicate without constantly struggling with my wife and family.

It has also given me much more confidence in social situations and family gatherings. Whereas before, I would make constant excuses about not going out and mixing with groups of people as I found it too frustrating and isolating, now I am going out again, meeting new people and attending social gatherings.

Having a cochlear implant is not a miracle cure for deafness and everyone’s experience of having one is different depending on your previous knowledge and perception of sound, among other things, but all I can say is that in my case it has been truly life-changing. I can now listen to music again, which I hadn’t been able to in years and I can use the phone again and speak to my family, which I hadn’t been able to do for about five years since I first started to lose my hearing.

I’ve recently become a cochlear implant mentor for AB, the company who made my cochlear implant. The idea of being a mentor is to meet with anyone considering having a cochlear implant and just to chat with them informally about anything they want to ask me about cochlear implants, whether it is the implantation process and what to expect after the switch-on, or what it is like now for me as a cochlear implant user.

We’re having one of these informal meet-ups soon on 8th August in London for potential cochlear implant candidates, so if you or someone else you know is a cochlear implant candidate, why don’t you come along? There’ll be a few of us there and we’ve all got our own personal experiences of being cochlear implant users. We’d love to see you there, have a chat with you and share our experiences with you.

When I was going through the cochlear implant assessment process, I spoke to quite a few cochlear implant users who talked about what it meant for them to have a cochlear implant and how it had changed their lives. I wish I had also had a mentor at the time to help talk me through it.

If you’re interested in coming along, please contact Ben Leigh from the advert above. We look forward to seeing you there!