Richard III at the Trafalgar Studios: If you don’t ask, you don’t get!

I was recently reminded what a powerful tool social media is. A short while ago I saw that there was going to be a production of Shakespeare’s Richard III at the Trafalgar Studios, as part of their ‘Trafalgar Transformed’ season produced by Jamie Lloyd. I immediately checked on STAGETEXT’s website to see if there was going to be a captioned performance, but was disappointed to see that it was not listed.

Richard III header

So I tweeted Jamie Lloyd, the Trafalgar Studios and STAGETEXT directly using hashtags about ♯accessibility and ♯inclusion to ask if there was going to be a captioned performance and waited for their response. Imagine my surprise when Jamie Lloyd himself tweeted me back saying that all their productions in the season would definitely be captioned. I couldn’t believe it. I was so happy! I immediately let my deaf friends know on the ‘Tree House’ Facebook group and several of them told me they wanted to come along too.

The next day I rushed down to the Box Office and bought tickets for my wife and a few of my deaf friends. I was really excited and tweeted the photo of me with the tickets at the Box Office.  I was really excited about it.

Richard III tweet

We finally went to see it together last Monday night. Since it was a cold, wet and miserable Bank Holiday Monday, I was glad to leave the house in the early evening to meet up with my friends for a Mexican meal in town before heading off to the theatre.

When we arrived there, it was completely full. Despite the fact that it was a very rainy Monday evening, it looked like every ticket had been sold. Tickets are only £15 for everyone on Monday nights, which Jamie Lloyd has done to make his productions accessible to everyone, particularly young people, who may not have ever seen Shakespeare before. I think this is an excellent idea.

When we sat down, I noticed a few people around us who I knew, so we all said hello. It was great to see some friendly faces and have a chat before the start. Our seats were not far from the stage with a great view of the STAGETEXT caption unit above the stage. There were rows of people sitting on the other side just behind the stage too. I love the cosy, informal atmosphere of the Trafalgar Studios and the young audience, which is why it is my favourite theatre in London.

It was immediately obvious that this was going to be a very different, modern take on Richard III. The stage set was designed like a late 1970s office, complete with old-fashioned typewriters, phones, a fish tank, TV sets and fax machines. Apparently this was inspired by the famous opening line of the play spoken by Richard “Now is the winter of our discontent”, which conjured up images of the winter of discontent in Britain in 1979, which saw mass strikes, three-day weeks and general public unrest.

Richard III_office

Since I’ve only recently had my cochlear implant switched on and have never tried to use a hearing loop since then, I thought I’d try it out to see if it would work, so I picked one up in the foyer beforehand. I was amazed to find that I didn’t even need to use the loop because I could hear the actors’ voices on stage and could follow what they were saying clearly. It was a totally new experience for me being able to hear the dialogue being spoken and follow the captions at the same time.

This performance was very gory, violent and sadistic. Watching the numerous murder scenes was often uncomfortable, but necessary, to understand the evil nature of the hunch-backed main character, Richard, and his relentless determination to keep torturing and murdering people, including his own wife and family, in order to achieve the ultimate prize of being King of England. It was based on the real-life King Richard III, who allegedly brutally murdered the two boy princes in the Tower of London.

Richard III - Martin Freeman and Lauren O'Neil - Photo Marc Brenner.jpg

Martin Freeman, who played Richard, was excellent. He limped around the stage like an evil, power-crazed tyrant. He reminded me of a modern-day dictator such as Stalin, Franco or Hitler. In one murder scene where he was killing his wife Anne by strangling her in cold blood with a phone cord across the desk, I looked at my wife, who was wincing and watching the scene with her hand covering her face. There really were some disturbing and gruesome scenes, but Martin Freeman managed to convey the psychopathic side of Richard’s character with his self-satisfied wit really well.

Gina McKee, who plays Queen Elizabeth, also stood out for me as delivering a great performance. She played the mother of the two young princes killed in the Tower. In one particularly harrowing scene, Richard had her taped to a chair while she was desperately pleading with him not to seduce her only surviving daughter. It is a very moving and disturbing scene.

Richard III_Gina McKee

Apart from the great acting, I thought that the lighting and special effects also worked really well and added to the drama. In one gruesome murder scene the creaky lift doors to the sides of the stage kept opening and closing at the crucial moment, adding to the disturbing sense of shock. Lights were also turned on and off and flickered around the stage throughout the play.

I thought it was a great performance and I’m so pleased that Martin Freeman decided to stay in London that night to play the part of Richard III instead of going to the Emmy award ceremony in the States to collect his award. We all had a great night and I can’t wait to go to the next captioned production at the Trafalgar. A big thanks to Jamie Lloyd and STAGETEXT! It just goes to show that if you don’t ask for things, you don’t get!

Rediscovering sound – like meeting up with an old friend

Originally posted on Richard Turner:

Richard CI_beer

After six weeks of anxiously waiting after my cochlear implant operation and hoping so much that it was going to work, I finally had my switch-on last week.

So much has happened in those last six weeks that I don’t really know where to begin to tell you. I thought it would be very difficult and very isolating trying to adjust to living in a world of total silence and tinnitus again. I’m not going to lie to you. It has not been easy and I have got through watching the first three subtitled series of ‘Game of Thrones’ on DVD followed by the complete series of ‘House of Cards’ while recovering at home. I can highly recommend both of them, by the way. But it wasn’t half as scary or as isolating as when I first lost my hearing four years ago.

The difference this time is that I…

View original 1,145 more words

Rediscovering sound – like meeting up with an old friend

Richard CI_beer

After six weeks of anxiously waiting after my cochlear implant operation and hoping so much that it was going to work, I finally had my switch-on last week.

So much has happened in those last six weeks that I don’t really know where to begin to tell you. I thought it would be very difficult and very isolating trying to adjust to living in a world of total silence and tinnitus again. I’m not going to lie to you. It has not been easy and I have got through watching the first three subtitled series of ‘Game of Thrones’ on DVD followed by the complete series of ‘House of Cards’ while recovering at home. I can highly recommend both of them, by the way. But it wasn’t half as scary or as isolating as when I first lost my hearing four years ago.

The difference this time is that I have learned to live with it and adapt to my deafness. In fact, it has changed me a lot as a person and how I see the world. But even more importantly, in the last few years, I have gained a whole new network of friends, who have provided me with the emotional support, help and guidance I have needed to keep me going in some pretty tough times.

I am especially grateful to the wonderful deaf, hard of hearing and hearing friends I have met and chat to regularly on the ‘Tree House’ Facebook group and also to the support and kindness shown by my fellow volunteers and friends from Action on Hearing Loss and other deaf charities I’m involved in.

It is wonderful that even when I have not been able to hear anything and have struggled to communicate with my wife and other people on a daily basis I have been able to meet up with my fantastic friends and have been to some amazing events recently. I have not had to struggle to communicate with them and they have been very kind and patient with me. We all have shared experiences of living with hearing loss and they know how to adapt their communication tactics with me.

For instance, last week I went to a ‘Tree House’ group picnic in Regent’s Park. There were about twenty-five of us there from all ages and backgrounds. Some were Deaf BSL users, others were deaf, hard of hearing or deafened English speakers like me and also hearing people. None of this mattered as we all got on really well, had fun and communicated with each other using a mixture of BSL/SSE, speaking, lipreading or writing things down, according to each other’s communication needs. We all had such a great time that we can’t wait for the next event now! Going to this picnic really cheered me up and boosted my self-confidence.

Richard's blog_Tree House group

So how was the switch-on and how has it been over the last few days since then? Well the only word I can use to describe it is “Amazing!” When the audiology technician first switched my cochlear implant on and I could hear the beeps as she was testing what I could hear, I couldn’t believe it. I just thought “Wow!” Immediately I could hear the sounds around me really clearly.

At first the technician asked me if I could hear her voice and I replied that I could. It was very clear. Then I heard water running from the tap in her office and even the ticking of the clock on the wall. These were sounds that I hadn’t heard in years as I couldn’t hear that well even when I wore my hearing aid until fairly recently. It was crystal clear. The difference in the quality of the sound I can hear now and the sound I heard from my hearing aid is huge. I hadn’t expected it to sound this amazing. It is truly life-changing!

Over the last few days it has been wonderful just to have a normal conversation with my wife without struggling to lipread her and follow what she’s saying. On that first evening after my switch-on I sat in the garden with my wife and my dad chatting about what an amazing day it had been. The next day I rang my mother and had a chat with her on the phone. Even though I still struggled to hear her as I think it will take time to learn to re-adjust to it, she was over the moon just to hear my voice! It was the first time I’d been able to speak to her on the phone in over three years.

Every day since then I have just been enjoying being able to hear again and rediscovering sound I thought I’d lost a long time ago. It’s like meeting up with an old friend you haven’t seen in a long time and rediscovering the things you have in common and what you can remember about them. I am constantly surprised and amazed at the sounds I remember from before and can suddenly hear so clearly again.

Yesterday, for instance, I heard a sound I didn’t recognise. It was the sound of my dog Jake’s paws as he walked across the laminate floor in the lounge. I hadn’t heard that sound for a long time and I was surprised by it. Later I sat outside in the sunshine and for the first time I could hear the sound of my cat’s bell on his collar as he ran down the garden to chase the birds away.

It’s everyday sounds that I now find truly amazing. Words cannot describe how happy I feel just to be able to hear them again after such a long time. I put on a CD in my car this morning to find out what it would sound like. I have always loved music but I haven’t been able to listen to it for several years now. I listened to an Oasis song which I’ve always loved called ‘Live Forever’. It didn’t sound the same as I remembered it but because I knew the words of the song so well from memory, I could listen to it and appreciate it. I never thought I would ever be able to hear music again.

Richard's CI blog_Oasis 2

I feel like I have come a long way since I first started to lose my hearing. I have met some incredibly inspirational people on my journey and I am now starting to learn to adapt to being able to hear sounds again with my new cochlear implant. It will take a lot more time to get used to it and to rediscover sounds I thought I had lost a long time ago.

I have also had a few teething problems with it since yesterday, which has been frustrating, but I think like since it is completely new to me, it will take time for me to get used to using this technology. I posted a question today about why my new cochlear implant suddenly didn’t seem to be working on the AB Users Forum on Facebook and I got lots of helpful advice from fellow users, which reassured me a lot that the problem could be fixed. Thanks very much to those people on the forum. It helped me a lot.

At the end of the day, though, I am still a deaf person, caught between the hearing and the deaf worlds, being both amazed and frustrated at both worlds with equal measure. I think underneath it all we are all human beings with similar hopes, dreams, problems and anxieties. We are not all that different at the end of the day. All I know is that right now I am just enjoying rediscovering being able to hear again.

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

Image

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.

Tom Shakespeare header

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”.

Tom Shakespeare

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.

Tom Shakespeare screen

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!

Tom Shakespeare_label jars

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/

Tom Shakespeare_pizza

 

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

Image

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.

Image

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.

Image

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.

Image

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.

Image

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.

Image