Carpe Diem: my new communication journey

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It’s been a while since I last blogged. It’s been a difficult last few weeks, to be honest, and I didn’t feel able to write about it, but I’ve now decided that I want to blog again and tell you what’s been happening to me since then.

A couple of weeks ago my hearing dropped suddenly, virtually overnight. I woke up and everything sounded muffled and distant. I couldn’t hear my wife’s voice and I could hardly hear my own voice either. I knew that things weren’t right and my hearing was dropping dramatically. It felt just like it did before when I first lost a lot of my hearing three years ago.

I managed to get an urgent appointment to have my hearing checked out at the ENT hospital on Gray’s Inn Road at King’s Cross the next day. To cut a long story short, I ended up on high dosages of steroids in the hope that they would restore some of my hearing. However, a few more hospital trips later and I am now left with hardly any hearing at all.

This has been really difficult to come to terms with, even though it has not been as much of a shock as it was three years ago. I have a much more developed support network now than I did then. But even still, it feels just as hard. I now feel excluded from so many things that I used to take for granted when I was hearing. I am finding it hard to communicate with other people when I can’t hear what they are saying and I can’t join in their conversations. I now can’t use the phone at all, and everything just sounds really muffled and distant with my hearing aid.

I feel like I have now entered a new stage in my deaf journey, which is a very lonely place to be. I know that anyone with a hearing loss will identify with this sense of isolation, particularly as deafness is such an unseen disability.

Yet I am so lucky that I have the tremendous support from my wife, family and close friends, who are really helping me through this. I use a mixture of communication tactics with them, like lip-reading, looking for visual clues, some basic sign language and fingerspelling as well as talking, and asking them to write down what they are saying as a last resort. It’s all incredibly tiring and frustrating, particularly as I now have to concentrate really hard to rely on lip-reading much more, but we manage to just about get by.

These communication barriers make me even more aware of just how important good access to everyday things is to deaf people. I come across new obstacles and barriers everyday, which I previously was completely unaware of when I was hearing. For instance, the other day I found out that my local Blockbusters DVD shop is closing down soon. I actually feel really sad about this because I now won’t be able to rent DVDs anymore, because DVDs rented online from companies such as Love Film don’t have subtitles, so I can’t watch them anymore unless they decide to introduce subtitling.

Even when I was at the ENT hospital in Gray’s Inn Road I had major communication barriers.  While waiting in the outpatients’ waiting room, the VDU screen wasn’t working, so they were calling patients’ names out for their appointments. I would have had real problems with this if my sister hadn’t been there with me, as I would not have heard them calling my name out when it was my turn and I would have missed my appointment. I have learned from experience that whenever I have a hospital appointment, I have to take my wife or a family member with me to help me as few hospital staff members have any deaf awareness. This makes me feel disempowered and too dependent on other people, which I shouldn’t be at my age.

I now can’t attend most meetings or events anymore unless they are made accessible to me via speech-to-text reporting (STTR), which is usually not available as there is no funding for it. I have been told that a “reasonable adjustment” would be made in meetings via the provision of a working hearing loop, but this is not “reasonable” for me at all as a hearing loop is now useless to me, so I wouldn’t be able to follow the meetings at all.

But thankfully it’s not all bad news and lack of inclusion and equality for me. Carol, a wonderful lady who I volunteer for at Action on Hearing Loss’s ‘Hear to Meet’ service in Barking and Dagenham, has really supported and encouraged me, so I’d really like to thank her for that. She has asked someone to help support me in meetings with lip-reading, signing and communication tactics. It is a learning curve but it is working for me. It is total communication support, which is a big help to me and I’m also improving my sign language. It’s great to have support like this from people who genuinely want to help me.

Now that my hearing loss has become really profound, it has got me interested in improving my sign language. I studied basic BSL to Level 1, but I now find that I’m increasingly using it more, so that I don’t have to totally rely on struggling to lip-read people. I’m learning with a brilliant BSL teacher called Joe Collins, who has helped improve my confidence through signing and he is an amazingly patient teacher. I feel like it is such an achievement to actually have a conversation with him in BSL.

I am also increasingly using some basic sign language with my wife Joanna at home, and she is benefiting too by learning from me. I feel that using some basic BSL enhances my ability to manage my wellbeing as my hearing has deteriorated. I think that I am trying to compensate for my hearing loss by improving my visual language. I’ve now signed up for a BSL Level 2 course, which I am starting in January. I only wish that these BSL courses were cheaper and more affordable for people like me.

It has also really made me appreciate the importance of captioning and remote speech to text reporting (STTR), as they are accessible and universal to people with all levels of hearing loss, unlike hearing loops, which are fine for hard of hearing people, but not if you are severely or profoundly deaf.

Last week, for instance, I went with my wife to the British Library to see a talk by Lucy Inglis, an historian, journalist and writer. Her talk was called ‘Georgian Londoners: The Making of a Modern City’. It had live speech-to-text reporting by STAGETEXT, and it was related to the new exhibition currently on at the British Library, called ‘Georgians Revealed’. This was to celebrate the 300th anniversary of the accession of George I to the throne.

I really enjoyed her talk in the auditorium and it was great not to have to struggle to lip-read her from afar. She gave some fascinating insights into a wide variety of aspects of Georgian London life. It was great that I could follow what she was saying from the live speech-to-text reporting, although she spoke really quickly and covered so many different topics.

I enjoyed her talk so much as I learned so much and I felt back to my old self again. Last week we followed it up by going to the actual exhibition at the British Library itself. That too was fascinating and I’d recommend anyone to go and see it. I really felt like I’d learned something and could relate it to how we live our lives today. The British Library, together with STAGETEXT, does these accessible talks so well and the exhibitions are great too.

I now want to focus on enjoying doing all the things I love doing, such as going to captioned theatre performances and accessible talks with my wife and friends, volunteering in my local community, walking my dog Jake and trying to help increase deaf awareness.

I’m just trying to enjoy life as much as possible, taking each day as it comes and trying to focus on the positives, rather than the negatives. I’m also trying not to worry about the future, as I don’t know what it will bring.  My new motto to live my life is ‘Carpe Diem’ and I intend to enjoy every moment as much as I can. I’ve recently had a new tattoo done with those words tattooed on my arm, although my wife wasn’t quite as thrilled about it when she saw it as I was!

A Midsummer Night’s Dream at the Noel Coward Theatre: A Contemporary, Fun Fantasy

Yesterday I went to see Michael Grandage’s highly original production of Shakespeare’s ‘A Midsummer Night’s Dream’ at the Noel Coward Theatre in the West End with my wife Joanna. It was a matinee performance captioned by STAGETEXT, starring David Walliams and Sheridan Smith.

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When we arrived inside, I was pleased to see that we had good seats in the Royal Circle with excellent views of the two caption units, located directly on our eye level on either side of the stage. I looked around from my seat and admired the beautiful theatre, which was absolutely packed with people. There was not a single spare seat in sight, which is unusual for a matinee.

At the start of the First Act, I wasn’t sure if I could follow the plot or the Shakespearian dialogue, written four hundred years ago. I found though, that reading the captions not only helped me to follow what the actors were saying but also to understand the difficult old English.  Joanna told me that she found herself reading the dialogue too to help her follow it better.

As the action unfolded, I found it very funny and relatively easy to follow the plot, although it was a bit confusing at first due to the fact that there is a play set within the main play and the story kept switching between the two interconnecting plots. This was a production with a really contemporary twist to it, which was really fun and entertaining to watch.

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The set designs were amazing. The play starts off in a repressive urban setting, but once it moves into the woodland fairy scenes, it turns into a magical 1970s flower-power era fantasy with a giant magical moon in the background.

Sheridan Smith is wonderful as Titania, Queen of the Fairies (in addition to doubling as a modern day Hippolyta). With her Toyah Wilcox-style hairdo, pink feathers and voluptuous curves, she seemed like a sexually liberated wild-child, and she looked like she was loving every minute. There was a really funny scene where she was seducing David Walliam’s hapless character Bottom (who had been turned into a donkey) while he was getting stoned on pot in the fairy wonderland. This was pure flower-power magic.

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I have never seen Shakespeare brought up-to-date like this before and I thought it was great as it makes it more accessible and fun for younger audiences, who probably think of Shakespeare’s plays as being very serious, fairly inaccessible and difficult to endure, which was definitely not the case with this production.

David Walliams stole the show too, with his hilarious portrayal of the hopeless amateur actor Bottom. He played an incredibly camp and OTT Bottom. Someone remarked that he acted it in such a camp manner that he reminded them of Frankie Howerd, but I thought that his character could have come straight out of ‘Little Britain’, a TV series we all know so well. It was brilliant comedy and I couldn’t help laughing every time he was on the stage. I read an interview with David Walliams in the play’s programme and when asked by the interviewer what kind of research he’d done for his role, he replied “Well I am playing a vain, camp, talentless actor, so I had to do no research whatsoever”. Brilliant, although I’m sure he was being really modest here as his acting was great.

I also laughed a lot during the scenes involving the four lovers, and I really liked the playful fight scenes between them. I thought that Katherine Kingsley, who played the ugly, leggy Helena, was particularly good. She made me laugh when she kept running around the stage in her underwear chasing Sam Swainsbury, who played Lysander, like a demented sex-starved spaniel. It was hilarious.

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One of my favourite scenes was near the end when David Walliams’s character Bottom, along with his fellow amateur actors, acted out the play of ‘Pyramus and Thisbe’ in front of Theseus and Hippolyta at the wedding of Lysander and Hermia. Dressed in a Roman centurion’s costume, after believing that his beloved Thisbe (played by a man) was dead, he was supposed to kill himself by stabbing himself with a sword. David Walliams totally hammed up the death scene, taking ages to die and repeatedly coming back to life in a very camp manner. It was pure comedy gold.

At the end of the play after the actors took their bow, David Walliams made a short speech to the audience, appealing for us to donate to a charity, which supports actors and actresses who have fallen on hard times, either through disability, illness or because they have become carers. He said that some of the actors from the play would be in the foyer collecting for the charity afterwards. As he made this short impromptu speech, I noticed that it was being captioned on the screens at the same time, so Alex, the captioner, must have been captioning his words live. I was impressed by this, as it demonstrated how live the captioning is and how flexible the captioner is to include moments like this too.

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I loved this production and came out of the theatre with a big smile on my face. Joanna and I both thought that this was one of the best plays that we have seen recently. By giving it a contemporary, hippy-style twist, it made it fun and accessible to new, younger audiences. The captioning was so seamless that I hardly noticed it. It really helped my understanding of the 400-year old Shakespearian dialogue too, as I’m sure it did for others in the audience.

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