It’s 10 months since I was switched on. I’m writing this update with ‘deaf me’ in mind. The deaf me who couldn’t find answers to the questions I had about how life could be. Like access at work and to the arts.
This month I was able to follow two theatre shows all the way through. I haven’t been able to do that in a loooong time. It felt bloody great. I genuinely loved the shows too – always a plus. These were ‘fringe shows’ at Pulse Festival with two or three actors. I saw a bigger show at the Royal Court Theatre but still felt the need to read the play in advance. I saw another live show with a panel discussion and theatrically performed poem, but still find poetry very hard to follow. I can hear most of the words but not understand the whole.
In the last month I also began developing a new performance piece with director Gemma Fairlie and Rob Hart called Holiday Selfie – about my switch on and hearing rehabilitation.
Access at Work
I used to be profoundly to totally deaf across the frequencies (and still am when I take the processor off). I used to book palantypists or sign language interpreters for all work, even one to one meetings. Last month I went three weeks without an interpreter. It went great. No problem. I was in a rehearsal room with two or more people and then a theatre festival, with noisy environments such as bars. Had a brilliant time. I followed audience feedback after a performance. I had to strain to hear people who sat a few rows back but otherwise great.
My energy levels remained good. I slept well and did not have any access related anxiety (previously a huge problem in my working life). I didn’t drink any coffee until three days before the show. I didn’t get the terrible brain crushing fatigue associated with lipreading (I still lipread but am not wholly dependent on it). I have some incidental hearing, meaning I can catch things that I wasn’t expecting to hear, not directed at me, or without lipreading. I expect I will still require communication support in some situations, such as a large theatre job at which I need to take a lot of notes – I probably still can’t lipread or watch a fast moving group of actors and take writer notes at the same time. As things stand, I would now class myself hard of hearing – I still ask for repeats, I still use communication strategies. But usually only need one repeat – rather than five and a paper and pen job.
In my show I had one scene where I do some dance moves to music whilst talking. I hadn’t spoken in time to music in around 14 years. It’s hard to remember when I stopped. Anyway lets just say I’m very rusty at the old come dancing and talking thing, but I’ll get there (according to my director).
Someone recently asked me if I had thanked my interpreters since I was switched on. I’m not sure how aware people are of the way deaf people work with interpreters. It was a professional working set up. They were not volunteers. I always paid them, and I hope I always thanked them sufficiently at the time. But we were at work, and I guess you don’t send flowers and chocolates to everyone every time they do a days work. However I never forgot how utterly dependent I was on interpreters in order to be professional. And to their credit my interpreters didn’t add to that feeling of powerlessness by asking me for a medal.
The landscape for both interpreters and deaf people is changing now, and so it is actually a good time to restate what communication support workers do for us.
I must have worked with hundreds of interpreters. I’m lucky to now be able to function more without interpreters, but they’re still essential for many deaf people who cannot benefit (to the same degree or at all) from a cochlear implant. The recent changes to AtW funding for deaf workers are being challenged by campaigners. The prospect of having my access to work provision cut was my worst nightmare. It wasn’t on the agenda as it is now, back when I got my CI referral, but I did sense the writing was on the wall, as the coalition government demolition job gained pace. Maybe it will be okay I thought – but maybe it won’t – hell, drill my skull please, I need to access information by any means necessary!
The way things stand at the moment, I feel like I’ve caught hold of a rope dangling out of a helicopter, flying away as the UK goes up in smoke. Frightening, sickening times for disabled and deaf people.
It’s one of the reasons I decided to implant. I was going to lose my last little scraps of residual hearing and had to secure my future, “just in case”. At the time of deciding, it felt like a fatalistic thing to do because I didn’t know CIs had become so advanced. I felt desperate. I had to do something. As it turned out, my decision wasn’t fatalistic. It lead to something beautiful. So, no regrets.
It’s proved very useful to be able to use the phone ‘normally’ for work. People do tend to say ‘oh no one uses the phone anymore’ – but they do – at work. It’s a big deal. If you’re deaf you will lose count of the number of times someone initiates a working relationship with the emailed words, “Can you give me a call / can I call you to discuss?” I sometimes offered to do a Typetalk TextDirect call, but I couldn’t do that on the hoof, like I do now. Plus I no longer have to complain about or pretend to sympathise with hearing people who ‘feel a bit awkward’ or dislike using Typetalk.
We have email, we have text messages and lovely repetitive strain injuries, but I heart the telephone. Always did. I just need to stop talking ridiculously poshly on calls, like social climber, Hyacinth Bouquet.
Using the voice phone is also useful if you’re attacked in the street and need to call the police right away, or if your car breaks down and you need to call for car rescue. Stuff like that.
I’ve also had some very cool phone conversations with my recently implanted deaf sister. The hospital had warned her she would not get much benefit from a CI, but she is proving them wrong. She also went for the Advanced Bionics Naida, same as mine. My sister hasn’t been able to hear on the phone since around 1990.
Some movies are still harder than others. It really does help if the movie sound track is in sync with the film! It’s shocking how often cinemas fall short on that one.
I saw a documentary film, Diary of a Dissident Poet, directed by Shelley Barry. The sound was good, and in sync and I could follow the first part quite well, although the main subject James Matthews was tricky to lipread, and some of the other accents were hard as well. I’ve watched a few things on my laptop with my ComPilot which sends audio direct to my implant and makes comprehension of film much easier. I can also follow movies on planes without subtitles, using my ComPilot and a jack lead. Some but not all. It depends on the sound track.
I also use my ComPilot to watch YouTube videos without subtitles, including comedy.
I’m following the Dangerous Visions, dystopian science fiction season of plays on BBC Radio 4. I’ve listened to one so far, in fifteen to 30 minute chunks. My brain still needs to learn to concentrate for extended periods to pure, spoken audio. I still can’t follow a whole play and do something else at the same time.
I’m following radio drama much better than a few months ago. But I still prefer using a ComPilot gadget (to send sound direct to my microchip) rather than listening to the bare sound, which takes more effort of concentration.
I can now follow radio news reports with the ComPilot whilst my husband listens and chats to me. We couldn’t do this together before, because we used just the one laptop to listen to the radio and I could only use my ComPilot to listen to that if I plugged in a jack lead, which cut the sound out for my hearing husband.
I now use an iPad which allows me to bluetooth the radio via ComPilot direct to my implant. When I use the 50% ComPilot and 50% t mic program, I can hear the outside world AND the radio. That might sound complicated but it’s really simple and easy to set up and use.
I’m really enjoying an improved ‘reality’ in the acoustic in which sounds happen. Early after switch on I knew that sound seemed to be occurring in the ‘wrong’ acoustic. Sitting on a balcony I told a friend, the street outside is too flat, too close. There wasn’t enough depth. In other situations I think the echoes were crazy – but quite fun and beautiful.
Now there is more complexity to the ‘rooms’ in which sounds happen. The bleep on my entry gate happens in the street as I understand it and can see it, same for pedestrian crossing pips and the washing machine. I get no end of satisfaction from hearing the world’s bleeps in what I perceive to be their correct acoustic. It is an aesthetic pleasure and it tells me that things continue to improve. My brain continues to perfect its collaboration with the microchip and electrodes inside my head.