Richard’s Cochlear Implant: The Journey Has Only Just Begun

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I was feeling really anxious the night before my husband Richard’s cochlear implant surgery a few days ago. We had spent many months waiting for the operation date and many more talking and thinking about it. I really hoped more than anything that the operation would be a success and that Richard would soon be on the path to better hearing.

Yet I couldn’t shake off my constant nagging worries. “What if the operation goes wrong?” I thought. “What if there are complications?” “What if after going through all this it doesn’t work when they finally switch it on and he’s left permanently profoundly deaf? How will we cope?”

I know there are risks with any operation, and I have also met a few people who have had CIs where it hasn’t worked and they are left profoundly deaf permanently. But I have also met many more people, who have had very successful implants, and their lives have been transformed. I was trying hard to focus on the positives. How wonderful it would be if Richard could use the phone again, not struggle to communicate with people on a daily basis and not feel uncomfortable in any crowded or noisy environment with big groups of people.

Richard, on the other hand, seemed unnaturally calm. I couldn’t understand why he wasn’t feeling more anxious. Maybe he was trying hard to hide it or maybe he had spent so long thinking about it that by the time it had arrived, he had accepted it was the right choice and felt calm about it. Either way I was impressed by his calmness, which reassured me too.

I didn’t sleep very well that night at all. When my alarm clock went off at 5am the next day, I had been awake for a while. As we travelled in the cab to the hospital, it was already light outside but there was hardly any traffic on the roads or people on the streets. We were both really tired but Richard looked incredibly calm and relaxed.

At the hospital we saw the anaesthetist in the ward. She looked at Richard’s medical file with the doctor’s letters explaining his complex medical history and details of his drug treatment. She then looked really concerned. She said that he might not be able to have his surgery at the hospital that day because of the additional risk of potential complications due to his underlying medical condition. She was concerned about how he would cope under general anaesthetic. They didn’t have the back-up equipment at that hospital to deal with any emergency, so she said that they might have to postpone the operation to another date in another hospital, which did have the back-up equipment.

Richard couldn’t really follow what she was saying but he understood from her negative body language that the operation wasn’t going to happen that day. He looked absolutely gutted and suddenly seemed really stressed. He told her that he’d be devastated if it didn’t happen that day. Richard’s consultants at other hospitals had been discussing the possibility of Richard having the CI surgery at another hospital because of this for months, but they told us that it had all been resolved, his medical condition was stable and that he would be fine under the general anaesthetic. The problem was that the letter to explain all of this was not in his medical file due to a clerical error and miscommunication between different hospitals.

Thankfully the situation was resolved fairly quickly when Mr Shiada appeared on the scene and saved the day. He calmly reassured us all that he had a copy of the letter in question. After the anaesthetist had made a few phone calls to Richard’s consultants at St Mary’s and Whipps Cross Hospitals to double-check, he was given the go-ahead for the operation. He was then assigned his own room in the ward and a dedicated nurse to look after him. I was actually really pleased that the anaesthetist had been so thorough in checking all this and doing her job so thoroughly, as I knew there was a lot at stake if anything went wrong.

Eventually, at about midday, Richard was brought into the operating theatre for his surgery, which would last about three hours. After about half an hour waiting in Richard’s room I felt really on edge and couldn’t concentrate, now more worried than ever about the risk of complications during surgery. Three hours seemed like such a long time to have to wait on my own.

I decided to go for a walk to try and take my mind off it, so I ended up walking into nearby King’s Cross Station, where I wandered into some of the small shops there to try a bit of retail therapy. I ended up buying Richard a small box of chocolates as a present. I smiled as I thought about how many times I had told him off for eating chocolate, and how much he loved eating it. Now it didn’t seem to matter at all.

After a while I wandered back to the hospital. Shortly after that Ian, Richard’s step-brother, arrived in the ward to pay him a lovely surprise visit and we waited in his room together. Suddenly, the young student nurse came to tell Ian and I that she had been in Richard’s operation and that it had gone really well. It was the first operation she had been involved in and she was really excited to tell us. She explained how impressed she’d been with Mr Shaida’s calm, confident manner as he was operating. She was really happy to have been a part of it. I was so touched that she’d come to tell us this personally.

The matron then came in and told us that Richard had just come round and we could go and see him in the recovery room. Ian and I went down into the room and saw Richard lying there, all wired up and attached to a monitor. He looked really tired but he had a massive smile on his face. He had a big bandage wrapped round his head. Immediately, he wanted us to take photos of him, so we took photos of ourselves with Richard, all three of us with massive smiles on our faces now.

I felt immense relief that it was all over, like a huge weight had just been lifted from my shoulders. Seeing Richard’s smiling face made me feel really happy and so proud of him. The anaesthetist came over to say hello to us, and she ended up being included in the photos. She recognised Ian as he is an ENT surgeon and they used to work together eight years ago. She looked very relieved too. I thought that she, Mr Shaida, the theatre team and the nurses at that NHS hospital had all done an incredible job looking after Richard. I find it amazing that they do that for all their patients on a daily basis.

That evening I sat by Richard’s bed while he slept, as he was still tired and dizzy from the anaesthetic. He was missing the England versus Uruguay World Cup match showing on the TV in his room, but that was probably for the best, given their disastrous performance.

I felt physically and emotionally drained after such a long day, but incredibly relieved. As I left Richard in the hospital overnight I went home and felt shattered. I know that Richard’s cochlear implant journey has only just begun as he has only just started his recovery. But I am now hopeful that it will all be worth it in the end. I will keep you posted.

By Joanna Turner

 

 

Silence is Golden in Dennis Severs’ House

I had wanted to visit Dennis Severs’ House for a long time now, ever since I first came across it some years ago. I was working nearby in Spitalfields, and I happened to notice the imposing Georgian house with its sleek black door lit up by a gaslight as I walked by it on 18 Folgate Street. I was intrigued about what lay inside as I thought it was a museum, but I never actually went in there until now. Dennis Severs header I was recently having a chat with my deaf and hard of hearing friends on ‘The Tree House’ Facebook group about what museums and exhibitions we wanted to go and see as a group when I suddenly remembered this place. I had a look on their website and saw that they did evening candlelit tours in silence. Perfect! For once none of us need worry about whether it would be accessible to us or what sort of communication support, if any, would be provided. We could all do the tour in silence, and it would be a level playing-field for all. So our small group arranged to meet up last Monday to do the silent candlelit tour. We met up beforehand and arrived in front of the house at our allocated time of 7.30 pm. My wife Joanna knocked on the door, which was opened by a rather creepy, formal-looking bloke, who stood outside and explained the house rules to us in a rather stern manner. I couldn’t follow what he was saying, but Joanna said that he was explaining what to expect inside and what the “rules of the game” were. He was telling us to be careful of the lit candles and to observe the house rules of not speaking once we were inside the house. Dennis Severs dining room The candlelit tour of Dennis Severs’s House is a silent tour of the ten rooms, which make up the house. Dennis Severs was an eccentric Californian artist who bought the dilapidated Georgian house in 1979 and then spent the next twenty years doing it up and buying paintings, furniture, old crockery and artefacts to furnish the house and create the atmosphere and moods that he wanted to show the public to demonstrate his art. Unlike other museums, it feels like you are stepping into a domestic family scene full of living, breathing people and he wanted us to use our senses to imagine the domestic scene of the time, which was unfolding before our eyes. Dennis Severs pic in house We were asked to imagine a fictional Huguenot family of silk weavers called the Jervises, who apparently lived in Georgian times, but it feels like you are time-travelling, because although most of the scenes you come across are from the18th Century, there are actually some objects and artefacts which date from as recently as 1914. We started our tour in the basement and moved from room to room, before climbing the creaky stairs to discover the rest of the house floor by floor. Immediately we walked into the kitchen, it felt like we had just disturbed the Jervis family, who had left only moments before. There was half-prepared food on the kitchen table. I could smell the oranges and fruit left there, and see a pillar of natural sea salt, which they used to season their meals. We were being asked to use our imagination to picture the scene of food being prepared and cooked there. As we walked around the kitchen, we observed and took in the sights and smells before us in silence, whilst signing to one another to point things out and ask questions of each other. It was good that my limited sign language was proving handy to communicate with the others and we were all enjoying the moment. Dennis Severs kitchen As we moved up the floors from room to room a story of domestic family life was unfolding before our eyes. In several rooms there were paintings on the walls by Hogarth and other Old Masters showing the faces of some of the household members, which were lit by candlelight and the smoky light of the open fires in the hearths. It felt like I was stepping into a 3-D painting, which was full of life. There were various signs scattered amongst the rooms providing a brief explanation of what each room was showing, and throughout the house there were signs asking us “Have you got it yet?”, as if the owner was playing a game with us. Dennis Severs Hogarth In one of the sitting rooms there was a clock ticking and even though I couldn’t hear it, I could imagine it ticking. I could also feel the very old uneven floorboards creaking as I moved across them and smell the food, which had been left there half-eaten. Half a glass of port had been left there, along with a pair of glasses, as if whoever had been there had been disturbed halfway through their meal. Joanna signed to me that there were sound effects of birds tweeting in a cage and church bells ringing from the church outside. I couldn’t hear these sounds but I could feel and imagine them. It felt like an attack on my senses, and it was very atmospheric in the smoky, candlelit rooms. Smoking Room detail As I walked into one of the bedrooms, I saw a four-poster bed, which was still unmade. There was a black cat lying on the bed, which I assumed was stuffed. Even though we were not supposed to touch anything, I couldn’t resist the temptation to see if it was real or not, so imagine my surprise when I reached out to touch it and I saw its tail twitch! It was a real-life cat, which apparently lives in the house, so I stroked it and I could feel it purring. When we left the house, we went over the road to a lovely pub, where we chatted about the house and what we thought of the experience. We had all really enjoyed it, as it was different to anything we had seen before and we hadn’t had to worry about access and communication barriers. We were a group of hearing and deaf people, so we chatted in a very relaxed way, using a mixture of talking, lipreading and signing. My friends Sara and Eloise ordered their now signature chocolate cakes, and Sara told us that her chocolate cake was the best she’d had so far! We all had a great time at Dennis Severs’s House, which was an amazing visual sensory experience. The artist David Hockney once rated it as “standing amongst those of the greatest opera experiences”. I’d love to go back there again one day as I’m sure that I’ll see and experience things that I’ve missed this time. It’s definitely one to go back to and revisit. Dennis Severs_end picture

Tom Shakespeare on Enabling Equality: Label Jars Not People!

Last night I went to a very interesting talk at the British Library by Tom Shakespeare called ‘Enabling Equality’, which was made accessible via live speech-to-text reporting provided by STAGETEXT. This talk seemed to attract a lot of interest from several deaf and hard of hearing people who I know and some of us arranged to meet up beforehand.

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Tom Shakespeare is an academic, leading writer and activist against disability discrimination. He currently teaches at the University of East Anglia. Before that he worked for five years at the World Health Organisation.

Before I lost my hearing I was unaware of the concept of the social model versus the medical model of disability, because as a hearing person with a full-time job and fairly normal life, I suppose I had no reason to know about it as it didn’t affect me personally. But over the last four years I have felt increasingly aware of the way that society views disability, whether through barriers to access and exclusion, discrimination, lack of employment opportunities or the way that society views disabled people in general.

Tom talked about what the social model of disability means, how it came about and how it has evolved over the years. The original idea came from a group of “organic intellectuals” of disabled people. They didn’t come from the ivory towers of academia, but they witnessed the oppression and daily struggle of disabled people through their own eyes. They came up with the idea that it was society which disabled people, not the disability itself. In 1970 these people gathered together for talks at Le Court Cheshire Home in Hampshire. Many of the key ideas, which formed the disability rights movement, came from this meeting and they formed “The Union of Physically Impaired against Segregation”.

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Many books about the oppression of disabled people by society have been written since this time, and many sociological researchers have carried out academic studies of the social model of disability. In Britain in 1991 Colin Barnes wrote an influential book on social policy and discrimination against disabled people. This book was critical in getting disability discrimination passed, but it wasn’t until 1995 that the legislation actually came into law, despite years of lobbying by disability rights campaigners.

In 2006, a major global treaty, the “United Nations Convention on the Rights of Persons with Disabilities” was signed by over 150 countries, including the UK, and then in 2010 the Equalities Act was introduced in the UK, which includes requirements that “reasonable adjustments” must be made to ensure that disabled people are not put at a disadvantage to non-disabled people.

The idea of the medical model is that disability is caused by the physical impairment itself, and that physical limitations are what disables the individual, not society. This model focuses more on the individual’s limitations and looking at ways of reducing those impairments or using technology to adapt them to society.

He then asked how we should think about disability. Should we think of it in terms of the medical model, the social model, or both? He said that although it is entirely right that disabled people should have the same rights to equality as any other minority group, the solution is much more complex.

In his own research among disabled people the results show that they believe they are disabled by society and their own bodies. He believes it is not enough to have a level playing field in terms of employment opportunities and access to public services and the NHS etc. because disability is very diverse. The needs of the individual disabled person and their physical limitations must be taken into account and support given accordingly.

For example, people with severe learning disabilities may not be able to work at all, and they must be supported through the social security system. But there are many others with various physical limitations and they may be able to work part-time as long as the correct adaptations are made in their workplace. The equality legislation framework needs to be there, but they also need support and considerations of their physical limitations.

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I thought Tom spoke a lot of common sense. For instance, I want to be treated equally and I do not consider myself disabled. But I often feel disabled by society because barriers to normal communication and access are put in my way. When I feel most empowered and confident it is because these barriers have been removed and the appropriate communication support has been provided for me. But I also know that I have physical limitations and suffer badly from tinnitus and exhaustion when I have to concentrate for long periods of time on trying to lipread people and following their conversations.

However, despite anti-discrimination legislation being in place, we still have a long way to go to reach equality. He painted a pretty depressing picture of disabled people in employment in Britain, for instance, and those on benefits and low incomes. They are still 50% more likely to be unemployed than non-disabled people. Even for those in work, they are much more likely to be in low-skilled jobs on the lowest salaries and they face a glass ceiling, not being promoted or being willing to risk moving to another job for fear of not being accepted by their new work colleagues.

Also, under this government, many disabled people working in the public sector have lost their jobs due to major cuts and austerity measures. In the private sector, the situation is much worse with many companies still not employing any disabled people, even though many of them have the same educational qualifications as non-disabled people. Furthermore, they have been the hardest hit with benefit cuts and the introduction of the bedroom tax.

He also talked about labelling. In general, we now consider the labeling of disabled people to be a bad thing, as it often creates divisions and barriers, leading to feelings of exclusion and a “them and us” mentality. He mentioned how disabled people, who have a growth impairment like him, are often labelled, stared at, harassed or bullied. Some are campaigning as they want to be treated as individuals, just like anyone else. I loved the photo of the disabled person wearing the T-shirt against labeling. I really want one of those T-shirts!

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It was interesting, though, that he thought that sometimes labelling is actually helpful, like when someone has a major health problem and is waiting for a diagnosis, which inevitably creates fear and uncertainty. The diagnosis, then, which is a label, finally puts an end to the uncertainty and provides hope for a possible treatment or cure.

After the talk, there was an interesting Q&A session with the audience. Somebody asked about how Tom reconciles equal treatment with cultural beliefs about disability. He said we should recognise that to be human is to be frail. If we acknowledge that as human beings we are all vulnerable and frail, then we avoid typecasting disabled people as the only incapable, frail ones.

A deaf man in the audience commented that disabled people seem to be going backwards in terms of equality and anti-discrimination compared to other minority groups. He asked how we could enable and empower people to gain full equality in society. Tom answered that the problem is that different social movements and disability groups have different aims, so it is difficult to campaign with a single voice when they are so fragmented. The only way forward, he said, is to keep campaigning and raising awareness. You have to fight for it, which is not easy, but progress is constantly being made.

Afterwards, I went with a group of deaf people from the ‘Tree House’ Facebook group for a pizza nearby. We had a chat about the talk in a lovely relaxed environment. I enjoyed talking to the wonderfully inspirational Suzi Rees from iDID, as well as Sara and Lizzie, two of the co-founders of the ‘Tree House’. I am looking forward to many more future events with the ‘Tree House’ crew. Going to accessible talks and events like this make me feel empowered and positive. Label jars not people!

@RichardTurner

http://viewsfromthetreehouse.com

http://www.ididadventure.co.uk/

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The NADP Conference: A Celebration of the Past, Present and Future of Communication

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A few weekends ago I went to the National Association of Deafened People (NADP)’s conference and AGM in Southampton. I was really looking forward to it for two reasons: firstly because I had been nominated to become a Trustee of the NADP, and they were going to announce the new Trustees at the AGM there, and secondly I was looking forward to meeting other deafened people for the first time, who I had chatted to on some deaf-related Facebook forums, but never actually met in person before. I have also never been a Trustee of a charity before, so I was thrilled at the prospect and looking forward to working on deaf-related issues, which I feel really passionate about.

I woke up very early on the Saturday morning and drove to Southampton with my wife Joanna. We arrived right on time at Southampton Solent University Conference Centre, where the conference was being held, and after a quick coffee and a brief chat with a few friendly faces, we headed straight into the main auditorium for the conference. Once inside, I immediately noticed that the access in terms of communication support was excellent. There were two BSL interpreters, a lipspeaker and live speech-to-text reporting (STTR) of the full day’s proceedings, which was being relayed onto a big screen behind the speakers. I thought that this was total communication support done really well to provide great access and inclusion for everyone.

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The conference was celebrating the NADP’s 30th anniversary and also thirty years of Ross Trotter as Chairman, who is standing down this year and being replaced by Lidia Best. The theme of the conference was how communication has changed in the thirty years of the NADP’s existence.

The first presentation, which was given by Anna Duncan and Sara Flynn from the Auditory Implant Service at Southampton University, was fascinating. They talked about the past, present and future of cochlear implants, and also spoke about the experiences of the hundreds of cochlear implant recipients in Southampton.

I am particularly interested from a personal point of view because I am currently waiting to receive a cochlear implant (CI) myself, so I found what they talked about useful and informative. CIs have come a long way since Graham Carrick received the world’s first commercial implant in 1982. The implant totally transformed his life and he said that he “wouldn’t be where he is today without it”.

In 2014 there are approximately 324,000 cochlear implant recipients worldwide. In Southampton, by March 2014 they had 558 adult CI users (with a further 52 undergoing assessment) and 338 child users (with a further 16 undergoing assessment). The youngest recipient was six months and the oldest was 91 years old. After explaining what a CI is and how it works, they then went on to talk about the main issues and challenges for cochlear implantation today in the UK and abroad and what the future holds for cochlear implants in terms of development of both the technology and the sound quality, new research areas and official requirements regarding a person’s suitability for a cochlear implant.

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There are strict NICE guidelines regarding who is suitable for a cochlear implant and currently they recommend bilateral implants for children and unilateral for adults (except for those with a visual impairment). While the average BKB score (a hearing and speech recognition test) pre-implant (with hearing aids) was only 9%, post-implant it is 70%, so there is an average improvement in the score of 61%. The outcomes are variable depending on the recipient’s hearing history.

It’s interesting that children are entitled to two implants on the NHS under the current guidelines, but most adults only one, and this is something they talked about in more detail. Having two implants helps recipients tell where the sound is coming from as they have sound from both ears. Also, listening in noisy environments is easier. Research is currently being carried out on the benefits of having two implants for adults, as there are obviously cost implications, in addition to looking at the benefits in terms of the recipient’s improved quality of life.

Other areas of research currently being carried out are bimodal stimulation (where someone has a CI in one ear and a hearing aid in the other), research on listening to music with a CI and how the quality of the sound can be improved. For me, when I first lost my hearing, not being able to listen to music, which I absolutely love, was one of the things I really missed most, and I still do.

Further developments include the user having an accessory to make the CI waterproof, so that they could wear them while swimming. For the future, they are looking at developing CIs, which would preserve residual hearing via the development of surgical techniques using thinner electrode arrays, as currently, all residual hearing is killed off during the implantation.

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The other really fascinating areas of future research they are looking at is stem cell technology to regenerate auditory neurons and cochlear hair cells, and also the use of drugs within the cochlea at or around the implantation. Scientists think that drugs may improve outcomes with CIs and prevent further hair cell loss in the inner ear, but the problem is that they don’t know how long these effects will last. I think the next thirty years of cochlear implants are going to see some really exciting developments.

After lunch we had the NADP AGM. Ross Trotter was presented with a carriage clock for his many years service chairing the NADP and we all thanked and applauded him. Then he handed over responsibility to the new Chairman, Lidia Best, who gave a short speech. All the new Trustees, including myself, were introduced to the audience and welcomed to the NADP Committee. It was a really proud moment for me.

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Later that evening after the day had finished, a group of us had a meal together at the ‘Premier Inn’ where we were staying the night. It was a great, relaxed atmosphere where everyone felt comfortable and relaxed. It was really good to meet Tina Lannin there for the first time, a fellow Trustee, who had just arrived from London where she had been at City Lit’s ‘Deaf Day’, and I also had a good chat to Sally Clark, who is also now on the Committee. The best part for me was that as a group of deafened, hard of hearing and hearing people, we all got on with each other really well and chatted away happily, no matter what each other’s communication needs were.

Whereas I used a combination of communication tactics such as lipreading, talking, SSE and a bit of signing, some people didn’t know BSL at all whereas one deaf person I spoke to relied completely on BSL to communicate. I was really relieved that people were happy to write notes down for me when I couldn’t follow what they were saying, particularly when I was struggling to communicate in BSL. I was also glad to see that people in the group were writing things down for CJ on his ‘Boogie Board’ tablet, which I’d never seen before. I thought that was a great idea to help support communication.

I went to bed late that night, but happy after such an eventful day. It was lovely to meet all these new people and catch up with old friends too. I am thrilled to have been voted as a Trustee of the NADP and I am really looking forward to working with the other Committee members to campaign for better access to everyday services and employment for deafened people. I feel really passionate about trying to break down barriers to equality and inclusion in our society and also working with younger people on the Committee, who hopefully will bring in fresh ideas and a positive attitude towards change and breaking down divisions. I am excited about the future of the NADP and looking forward to some great things ahead.

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Lacquer, Louis XIV and lipspeaking at the Wallace Collection

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The last few weeks leading up to Easter have been pretty busy for me, so it was great to have a break. I have been preoccupied with hopes and fears about my future. I finally reached the end of the assessment for my suitability for a cochlear implant operation. I recently found out that I have been accepted for a cochlear implant. This is great news and I’m really happy about it. But I’m also worried about what lies ahead and I really hope that it is successful.

I worry that the implantation itself will kill off what little natural hearing I have left. But I also feel that I have not got much to lose now so I may as well go for it. Everyday communication has now become so difficult for me that I want to give myself the best chance I possibly can to be able to hear and communicate better with others. Deciding whether or not to have a cochlear implant is a very personal and difficult decision to make, but for me, I now know that I have made the right decision. It would be so wonderful to be able to follow peoples’ conversations and communicate better, instead of hearing half conversations , feeling left out and frustrated or having to rely on my wife and family members to communicate on my behalf.

For the last few years, I’ve felt like I’ve been stuck in-between the hearing world and the deaf world, without feeling fully part of either. I had my full hearing for the first thirty-nine years of my life, so losing it quite suddenly has been a big shock to me, and I am still trying to come to terms with it and learn to adjust to it as best I can.

I have been learning to use lots of different communication methods to try and follow people better. One of them is learning how to lipread people. I find it really difficult and tiring to concentrate hard on peoples’ lip patterns to try and understand what they are saying. It seems to be easier when I am in a quiet environment so that I can hear a little too, but when it’s noisy it is very difficult.

I can lipread my wife Joanna quite well now, but that it is because I know her lip patterns quite well and she is really deaf-aware, speaking clearly and always facing me. On the other hand, if the person I am talking to is not deaf-aware and they keep looking away, or they talk too quickly or mumble their words, it is virtually impossible for me to lip-read them. Hopefully my lipreading will get better in time too, but I still find it really difficult. This is one of the reasons why I really enjoy going to events, which have been made accessible to deaf and hard of hearing people. Recently, for instance, I went to a fascinating accessible talk for lipreaders at the Wallace Collection in Central London. This was a free event organised by the Wallace Collection’s Community Access programme.  Sara Scanlon and Lynne Dubin, the two lipspeakers, were both excellent communicators, which made it much easier for me to follow.

Because English is my first language, my preferred method of accessible communication at an event like this would ideally be live speech-to-text reporting (STTR) on a screen, if the technology were available, but I am open-minded and still finding my own way with different communication methods. I think there is no right and wrong way as long as you can follow what is being said and can communicate well. I found that Sara, in particular, was an excellent communicator because she provided total communication support. She used clear lip-speaking patterns with some sign-supported English (SSE), which I found really easy and helpful to follow. I am now learning BSL and I am finding that I am becoming more visual myself by learning to communicate in this visual, expressive language, although I find it difficult to learn and it will take me years to become any good at it.

The two speakers/guides, Carmen and Edwina, from the Wallace Collection, were excellent too. They took their time to explain things slowly and clearly to us, which really helped my understanding. Carmen, the Curatorial Assistant, gave us a talk about materials and techniques of the decorative arts, which are on display in the Wallace Collection.

She started off by giving us a brief history of the Wallace Collection before going on to describe some of the materials and techniques used in the decorative arts displayed there. The collection itself is housed in Hertford House, a stunning Georgian town house on Manchester Square, which is like an oasis of calm just behind the hustle and bustle of crowded Oxford Street. It displays the beautiful works of art, furniture and ornaments collected by the first four Marquesses of Hertford and Sir Richard Wallace, the illegitimate son of the fourth Marquess. It was bequeathed to the British nation by Sir Richard’s widow, Lady Wallace, in 1897, and turned into a public museum in1900.

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The collection includes many paintings by artists such as Titian, Rembrandt and Velázquez, and I only recently discovered that the most famous painting there is ‘The Laughing Cavalier’ by Hals. Most of Carmen’s talk then focused on the techniques and materials used in the making of the furniture and ornaments used in the collection such as marquetry, which is a way of adding patterns to plain objects using thin veneers of materials such as wood, metal, horn, turtle shell or mother of pearl. The technique was very fashionable in the 17th Century and was used in the design of furniture such as cabinets and other pieces of furniture made of wood.

She said that one of the most famous cabinet-makers of the 17th Century, who used marquetry, was André Charles Boulle (1642-1732), who was furniture maker to King Louis XIV of France. Many of his pieces of furniture are in the Wallace Collection, which we then went on to see after the talk.

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The other main technique, which Carmen described in her talk, was the making of lacquer in Japan, a technique still used today in the making of objects created when the lacquer is applied to a base, such as wood. Her description of the technique was fascinating because it is a very slow, laborious technique involving pure craftsmanship and skill. Basically, lacquer is made from collecting sap from a specific tree in the Japanese countryside and applying many thin layers on the wood until the finished product is hardened and looks glossy. Then various decorative patterns and inlay work is often painted onto the lacquer and it ended up with a very high quality, glossy finish. Lacquer was very fashionable and expensive in 17th and 18th Century Europe and we saw examples of beautiful Japanese lacquer cabinets using intricate inlay work upstairs in the Wallace Collection.

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I liked the fact that Carmen’s talk was very visual and tactile. She handed round many examples of objects for us to look at such as a delicate hand-painted lacquer bowl, pieces of wood with marquetry patterns on them and a turtle shell. We also had a good look at the marquetry cabinets and lacquer objects in the collection itself that she had described to us downstairs during the talk.

I really enjoyed this talk and tour of the Wallace Collection. It took my mind off thinking about my cochlear implant operation for a while. I felt that I had learned something new about the materials and techniques used in the making of some of the objects and furniture held at the Wallace Collection. These events really help to boost my confidence and I meet new people. It makes it so much easier for me when the access is good and I have the total communication support to meet my needs. I’m already looking forward to the next lipspeakers’ event, which is a walking tour of the history of Regents’ Park with Lynne and Sara in May.

King Lear at the National Theatre: An Accessible Family Affair

I was really pleased that I had managed to get tickets for the captioned performance of Sam Mendes’s production of ‘King Lear’ at the National Theatre last week. When I told some of my friends afterwards they couldn’t believe I had been so fortunate as they said it had sold out months ago and they were unable to get tickets.

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I had been looking forward to it for ages and I wanted to find out whether it was really worth all the hype. I’d not seen ‘King Lear’ before at the theatre so after quickly reading up on the synopsis of the plot beforehand I headed off to the theatre with my wife Joanna and my sister to see one of Shakespeare’s greatest tragedies.

Once inside, the theatre was packed out. It was great that we had really good seats in the stalls with perfect views of the two STAGETEXT caption units on either side of the stage. We were also very close to a kind of runway, which ran through the stalls and onto the stage. The runway was used throughout the play to heighten the dramatic tension as the actors either ran along it or gave some of their greatest speeches on it. This seemed to make it appear more immediate somehow, as it was used as a bridge between the audience and the stage.

When the play began, I was struck by how amazing it all looked on the stage. It was set in relatively modern times, and Mendes had designed it to look like a fascist military dictatorship such as Stalin’s Russia or Nazi Germany. Much of the cast was dressed in military uniforms and later in the play King Lear’s knights, who formed his entourage, were all dressed in black SS-style military uniforms, adding to the authoritarian tone of King Lear’s leadership.

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I didn’t find this an easy play to watch because it is so dark, heavy and tragic. At times I felt like I was almost enduring it rather than enjoying it. But the acting was superb and the plot totally gripping despite its dark undertones and capacity to shock people. It is a complex play with two plots running simultaneously, but despite this, I found I could follow the dialogue well through the captions.

Simon Russell Beale, who played the main character King Lear, was absolutely incredible. He managed to play the role very convincingly of a very tough, ruthless pre-Roman King of England at the start, who controlled his subjects and his daughters with an iron fist, but then he turned into a tragic old man, who ends up becoming broken and mad with remorse when he realises how wrong he has been and how unjust he was to his youngest daughter Cordelia. He had banished her to France for not flattering him and telling him how much she loved him (even though she really did) in order to inherit a third of the country, unlike her two sisters, who had insincerely declared their love for him to get their fortune.

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He stumbles and rages around the stage throughout the play like a man possessed. But somehow, it is only when he loses his mind that he suddenly seems more human and compassionate towards others, such as Gloucester’s eldest son Edgar, who was betrayed by his illegitimate brother Edmund and wrongly cast out of his home by his father. He also showed true compassion to Gloucester himself, who has been brutally blinded in his own home by Lear’s evil daughter Regan and her husband Cornwall. It must take incredible experience and training as an actor to portray such a complex character as convincingly as this, and Simon Russell Beale played the role with real depth, conviction and passion.

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The rest of the actors played their roles superbly too, particularly Kate Fleetwood and Hannah Stokely, who played Lear’s cruel and manipulative daughters Goneril and Regan. Goneril is portrayed as a ruthless, ambitious woman, who will stop at nothing to get what she wants and Regan is a cruel, vampish sex kitten, who easily betrays her husband and seduces Edmund behind his back, while also sadistically enjoying watching Gloucester being tortured and having his eyes torn out as punishment for hiding the whereabouts of her father.

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I also thought that Stephen Boxer, who played the Earl of Gloucester, was excellent. I could feel how anguished, distraught and vulnerable he must have felt after he had been blinded so cruelly, when he was wandering around the stage unable to see anything and having to be guided by his son Edgar.

There were many shocking and violent scenes in this production, as well as some scenes of nudity on the stage. At times I saw several elderly people in the audience wince and squirm in their seats uneasily at the more bloody scenes and the nudity. For instance, when Lear bludgeoned his loyal Fool to death for no apparent reason in a bathtub when he was losing his mind, and the final scene containing the murders and suicides of the main characters. But this play is depicting an evil time in history, so I didn’t find the scenes of violence at all gratuitous. They were just true to Shakespeare’s original play, which is bloody and violent, so I felt they were necessary and made the scenes seem more authentic.

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At the end along with the rest of the audience, we gave the actors a well-deserved standing ovation. I am still amazed at how well they can perform such complex, dark Shakespearian tragedies such as this with such conviction and depth of emotion. I really loved this production and so did my wife and sister.

My sister told me afterwards how much she had enjoyed watching a live quality performance such as this. She told me that the captions really helped her too, because even though she could hear the dialogue clearly, she found it really useful to read the captions to follow it better. They help everybody, whether you have a hearing loss or not.

I think STAGETEXT and the National Theatre have done a fantastic job in making this great production so accessible to deaf and hard of hearing people. I felt so lucky to have been able to enjoy it with my family on equal terms with everyone else there.

 

 

 

 

Show Me the Subtitles!

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Watching the highlights of the Oscar ceremony last night reminded me of how much I love watching a good film. It was great to see ’12 Years A Slave’ win best picture. I watched a captioned screening of this film recently at the cinema and I thought it was one of the best films I’ve ever seen.

For as long as I can remember I have loved going to the cinema. It has always been an enjoyable, sociable experience for me. I used to go regularly to the cinema with my wife and it was something we both really loved doing together.

But going to the cinema has become really difficult for me since I recently became deafened. I am now profoundly deaf so I rely on watching subtitled films because I can no longer hear the dialogue. So if a particular film being shown is not subtitled I simply cannot watch it. I can see the actors moving their lips but I have no idea what they are saying.

Imagine what it would be like if someone turned the sound off if you are hearing. That is what it feels like for me and other deaf people when there are no subtitles.

Unfortunately, the majority of films shown in UK cinemas are not subtitled. Less than 1% of current new film releases are subtitled in English. Most subtitled films are only shown once or twice a week in most cinemas – usually once on a weekday during the day when a lot of deaf people are at work, and sometimes on a Sunday morning.

It is impossible for a deaf person to go to the cinema on the spur of the moment, like everyone else. Why do we not have more choice? The cinemas say that they don’t show more subtitled films because there is little demand for them. They say that most of their customers are hearing and they don’t require subtitled films. Some of them actually complain that subtitles distract them from their enjoyment of the film, which is why they don’t show them at peak times.

In my experience those hearing people who complain are in the minority. In fact, if there are any complaints, the cinemas should find out why people are complaining. It could be because they have not advertised their subtitled screenings very well beforehand or informed customers that a particular film was going to be subtitled. I think that many people are still not aware of how essential they are to deaf people.

There is clearly a need to inform hearing customers about the importance of subtitled films. Until recently, cinemas used to show a short clip before the main feature explaining the importance of subtitled films to deaf and hard of hearing people. Why don’t cinemas bring this back?

Many deaf and hard of hearing people have to travel long distances to see a subtitled film as they are often not shown at their local multiplex, even in London. We have to check via a website called http://www.yourlocalcinema.com to see the limited listings for the week ahead.

Over the last couple of weeks I have been to the cinema three times at different cinemas across London. Unfortunately, on the first two occasions I wasn’t actually able to watch the film. I ended up having to leave shortly after the film started due to subtitling failures.

On the first occasion, when I went to see ‘Dallas Buyers Club’ at a Cineworld cinema in Central London, only every other line of the subtitles was visible on the screen, so I couldn’t follow enough of the dialogue to watch it. The cinema manager explained to me that this was due to human error and incorrect scaling of the film for the size of the projection screen.

The second time, at my local Odeon cinema in South Woodford on a Sunday, there were no subtitles on the film at all, despite the fact that it was advertised on their website, posters and flyers as ‘Subtitled Sunday’. The cinema manager told me that the distributor had sent the wrong, un-subtitled film to the cinema in error, but nobody had noticed it before they screened it.

On both occasions, I complained to the cinema manager, who apologised, gave me a refund and complimentary vouchers to see a future film. But I left feeling upset and frustrated, since it wouldn’t be easy for me to go and watch the same film again and both cinema trips had been ruined.

Since then, I have discovered from my deaf friends on social media that cinema subtitling failures are much more common than I realised. It happens regularly in cinemas across the country.  In fact, it has happened to nearly every deaf cinema-goer I know.

Some deaf people have told me that they now have a drawer-full of complimentary vouchers from the cinemas. Others have said that even when the films are advertised as subtitled, their local cinema does not switch the subtitles on unless a customer complains about it as they assume there are no deaf customers there. It seems that many UK cinema chains do not take access issues seriously enough.

Sadly, this problem has been known about for a long time. Charlie Swinbourne reported it in ‘The Guardian’ in 2011 and it seems like since then nothing has changed. The trust that many deaf cinema-goers had in watching films at the cinema has gone. Many of them don’t go anymore because they’re worried the subtitles won’t work.

We sit in the dark for half an hour beforehand watching un-subtitled trailers and adverts we cannot follow, praying that the film we have paid to see will be subtitled as advertised. But it feels like a lottery and we can never be sure until we see the first actor open his or her mouth on the big screen and the captions appear without a problem. Until then, we wait with nervous trepidation.

Going to the cinema is not a cheap night out either, so why should it be acceptable for deaf and hard of hearing people to experience so many subtitling failures and poor excuses from the cinemas for their lack of accessibility to us?

Yet someone from Yourlocalcinema.com told me that reported subtitling failures are very rare. I believe that the scale of the problem is massively underestimated because many deaf and hard of hearing people just don’t report it. Often they have communication problems explaining it to the manager and don’t want to complain, as it is too stressful for them. We simply keep accepting the vouchers from the cinema and the problem goes unreported.

When I was complaining about the subtitling failure to the cinema manager of Cineworld recently I saw an elderly hard-of-hearing woman there with her granddaughter. The elderly lady was clearly upset but she was too embarrassed to speak to the manager about it. Her granddaughter had to do it on her behalf. But this subtitling failure had ruined their cinema trip together.

But not every cinema has such a poor track record. Some of them have been excellent. The Curzon Cinema in Soho and the Vue Cinema in Piccadilly, London, for instance, have both been brilliant, with very helpful staff and great access. The London Subtitling Group meets regularly at the Curzon Cinema in Soho to watch subtitled films together in a friendly, relaxed environment. I wish there were more cinemas like this, which champion great access and inclusion for all their customers.

Along with other deaf and hard of hearing cinema fans, I just want to be able to watch my choice of film at the cinema when I want, like everyone else. I don’t want to have it decided for me by people who don’t know what I want to watch and when I want to watch it.

Although this seems an impossible goal at the moment, a lot more could be done to improve access to the cinema for deaf and hard of hearing people if the provision and quality of subtitled films was taken more seriously by more of the cinema chains across the UK. We need to engage with them more to campaign for better access and raise awareness of our needs.