RhodesMustFall Podcast

I edited a podcast on Audacity. I’m still learning. This time I recorded a live event and interviews and then edited it together with commentary. It feels good to be able to do this, without my CI I am totally deaf and it is impossible to hear recorded sound, never mind edit it. Here is the transcript. The pastor’s speech was amazing.

Transcript:
(Crowd singing struggle song).

Pastor Xola Skosana (speaking slowly on microphone to animated crowd): To equate Black pain with poverty or lack of food is to reduce Black people to an animalistic existence of eating defecating and dying.

Sophie Woolley: And that was Pastor Xola Skosana speaking at the Rhodes Must Fall rally. More from him, later in the podcast.

(Crowd singing.)

SW: On 9 April 2015 The university of Cape Town bowed to student demands to remove the statue of Cecil Rhodes. A couple of hours before the removal, I went along to the mass rally outside the building the students had occupied, to hear what people had to say. It was a happy occasion, there was a lot of singing, performance and speeches.

(Singing)

The movement grew out of a direct action by Chumani Maxwele’s three weeks previously, when he threw human excrement at the Rhodes Statue. In the last 3 years poo protests have become common. Chumani Maxwele’s act triggered a movement to remove the statue, it’s continued existence in pride of place symbol of how little UCT had changed for black students, staff and workers, since the end of apartheid. It was a symbol of how Euro centric the teaching was, and how white the staff. The movement want to belatedly decolonise UCT. It wanted to explain the extent of black pain.

The movement was about wider issues than the statue, but spurred on by support from black academics, and universities around the world and angered by the lack of management action, racist abuse from white students and the general public, the statue became non negotiable. The rhodesmustfall movement gathered momentum and the protestors won an incredible victory. When I went the rally the protestors in a proud and celebratory mood, but as one lecturer explained, the fight wasn’t over.

LECTURER:

…we must be mindful that the struggle has just begun and there is still a lot of work to do before we can say that UCT is truly an African university.

(Crowd singing).

I spoke to performing arts student Yolanda Benya, one of the organisers, who had been sleeping at Azania House, for about three weeks since the movement began. formerly known as Bremner House.

Interview with Yolanda Benya….noise from crowd….(I couldn’t hear everything she said).
Sophie:We’ve just come onto the rugby field, heading to the Rhodes Statue, and there is a huge crowd of people from Azania house and I’m with Yolanda.
Yolanda:Yeah!
Sophie: How does this make you feel?
Yolanda: I just want to say that me being here is for my family, the ones who are working in the mine…
Sophie: Why do you think so many people have come?
Yolanda: I think because they recognise that the statue has to go down at some point and the RhodesMustFall committee made sure that this thing happened, and the students and working class from Cape Town made sure it happened and the support from outside has been overwhelming.
Sophie:Everyone looks really happy.
Yolanda: Really happy!

(Crowd singing)

Sophie: It was a hot end of summer day, 30 degrees, as the huge procession walked from Azania House, across the rugby pitch to another waiting crowd at the statue. Riggers lifted the statue up in the space of a few seconds and placed it on a crane lorry.

(Crowd whistles, ululates, applauds and cheers).

The crowd was a mixture of all races an ages, students, press and members of the public. At the start of all this, I had initially approved of the poo protest but not the idea of removing the statue. But then I was radicalised by whatsapp and the internet. I saw that the black pain and anger shouldn’t be dismissed and realised I was using an English frame of reference anyway.
I started supporting the movement. I started supporting the rhodesmustfallmovement. But there was a telling moment after Rhodes finally fell. A black student climbed onto the crane lorry and started hitting Rhodes on the head with a wooden stick. I wasn’t standing very close, but reflexively, I ducked, flinched, and raised my hands to protect my own head. It was as if I identified with old Rhodes, the racist colonialist. Like I was being hit on the head.
I’m not sure why I did this.

Like so many things that involve change, rhodesmustfall evokes deep fears, and people respond dismissively out of self-protection. Maybe – I’m just guessing!Transformation frightens the hell out of the heart of whiteness. What next? Who is next? You can’t erase history! This is the sort of knee jerk reaction the movement was getting.

(Crowd chanting, clapping and singing).

Sophie: I spoke to another activist just after the statue fell.

(Noise of crowd…)
Sophie: What’s your name?
My name is Nolufele Ntsuntshe….
Sophie: Okay… How did that make you feel, seeing Rhodes fall?
Nolufele: Relieved in a way, as if a weight has been moved off – taken off my shoulders but I also have the sense that it’s only a step towards a longer ……(inaudible).
SW: Will the next part be more difficult? This was quite easy it took two weeks –
Nolufele: It wasn’t easy! There have been talks and talks over the years and only now, does it look like it was easy, but a whole lot of measure had to be taken by the students so it wasn’t that easy. I’m not expecting anything easy to follow either.
Sophie: You have a big fight on your hands over the next few years.
Nolufele:Yes
Sophie: And hopefully it will get bigger and bigger –
Nolufele: It shouldn’t though! It might get bigger and bigger but it shouldn’t because we are a so called liberated country. We have voices and what not. …words need to be put into action.
Sophie: But now everyone is talking and listening so that’s great. Congratulations!
Nolufele: Thank you.

Sophie: I will leave you with the oratory of Pastor Xola Skosana who spoke at the rally of Rhodes Must fall. I will give you the whole thing as I think it’s pretty good.

Full text of Pastor Xola Skosana’s speech here http://www.mediaforjustice.net/speech-by-pastor-xola-skosana-at-the-mass-meeting-marking-the-removal-of-the-rhodes-statue-from-uc/

My first podcast

Here is my first podcast. I taught myself to edit sound.  I need to get advice on a better mic and software, but I’m delighted all the same to be able to do this. Click here to listen on Soundcloud.

 

Here is the transcript:

Hello my name is Sophie Woolley. I’m a profoundly deaf cyborg. I lost my hearing as an adult. Now I hear via cochlear implant. I was activated or switched on in August 2013. This is my first ever podcast.

Today I’m going to talk about why we watch YouTube videos of deaf people crying. I’m not saying we shouldn’t do that, I just think it is worth examining.

The first type of video is of a deaf person crying after their cochlear implant is switched on for the first time. These switch on videos go viral. The second type of video, more specifically, is a Samsung advert in which a Deaf man is filmed by hidden cameras being surprised by neighbours who greet him in sign language, for the first time. When the trick is revealed, the Deaf man cries, and so do we. We weep cathartic tears and feel with him.

The third video is not of a deaf person crying at all, it’s a hearing dad of four children in a spoof video. Someone on my Facebook called it mock desperation porn (then deleted their post). The dad is shown crying tears of joy after hearing silence for the first time.

I have to say, I felt much better after watching the spoof video than I did after watching videos of deaf people crying. As a deaf cyborg in a hearing privileged world, I prefer to watch satire about noise tortured hearing people cry, but maybe I’m just nasty. As a cyborg I know I can switch the noise of the world off in an instant. I have an escape hatch, which hearing people don’t.

So about the switch on videos, why do they appeal to millions? Sometimes the deaf person becomes an internet sensation. The videos are shared by thousands and the popularity of the videos annoys some deaf people for a number of reasons and the popularity of the videos can feel oppressive.

I have a confession to make. I have a switch on video, which is so boring, apart from my mum who is very funny in it – it is so boring that a director edited it into a spoof movie trailer to try and make it more exciting and emotive.

I wish my switch on had presented itself in a more exciting and emotionally explicit way for the camera, so that I could have become an internet sensation. It is always nice to be sensational. I would have felt very modern, but also exposed – and for what? So that millions of hearing people could project their own desires onto me and misunderstand what I was feeling in that moment? I was thinking and feeling some weird shit in that moment, you have no idea.

When I saw the Samsung advert featuring a deaf man crying because hearing people had learnt to sign (for an advert), I thought, what is happening to deaf people’s tears? Maybe they are being appropriated and sold back to us now in a bottle marked drink me, and you will become a bigger person.

Is there a connection between the tears in the advert and the tears in the switch on video? Are we all, deaf and hearing, being infantilised as we click play for instant happy ending weepies?

Why do we like to watch deaf people crying with apparent relief and joy? Let us for a moment treat both switch on videos and the samsung advert as fictions that harness our fears and desires. I don’t think switch on videos are fictions, but just bear with me for a moment.

The reason why we watch both type of video is the hook, which is the moment of relief in the deaf person’s eyes, having been freed from their isolation. The hearing world is the hero, and the deaf person the damsel in distress.

What is the emotion being evoked in the Samsung advert? It is the universal human emotion of compassion, of needing to connect with others. None of us wants to be alone in the world. Prolonged isolation is a form of punishment. We use it to torture our suspected terrorists. We see in the deaf people crying videos the acute relief at escaping the isolation of deafness and we might also see that the strain and trauma of the isolation repeats at the moment of release.

Let me go back to the idea of the switch on video as a fiction. They are a fiction because they are watched out of context.

And also as a deaf person, I found it hard to suspend my disbelief before my surgery. I tried to look for truth in so many videos, but I could find no proof that it would help me very much and it felt cruel to go there in my head. Sometimes I felt like going for implant surgery was submitting to an oppressive atrocity, a Frankenstein procedure.

Also it felt cruel that I had to change myself with invasive surgery in order to connect with people. I felt rational about it but also angry about it. The switch on videos were an abomination, a humiliation, a desperate act of self mutilation. It does not harness our desire, it realises a nightmare. I don’t feel that way now, but you get the picture.

So perhaps it would have been easier for me to watch a fiction that other people in my town would all learn to sign. Maybe a whole town could be made to sign, inspired by that advert. But I don’t think so. It is true that some villages with a high proportion of deaf families do all become bilingual But how many hearing towns decided to learn to sign as a community after sharing that video online? How many people decided to rewire the world around a deaf person. How can that advert come true?

The Samsung advert is a real fiction but it allows us to dream. It harnesses a desire that other people will change because we’re worth it.

It would be good to do an experiment and try and teach a whole street to sign, or the key people in that deaf person’s daily life. Then film it all and see if you can make the advert come true.

If people sign to me in shops and so on I do think it’s lovely and I want to hug them and get emotional. But I feel equally emotional when I hear someone say have a nice day, because I can hear now. And then I wonder how we get beyond the smalltalk which seems to me to be the hardest thing for anyone, deaf or hearing as we pass on and retreat back into the comfort of the viral weepies of our smart phones.

 

 

 

Recent breakthroughs in theatre, radio and film

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.

Theatre

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.

hb

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.

Film

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.

Radio

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.

Acoustics

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.

 

My cochlear implant switch on video

“Carry on talking” I tell my family, “so I can see if I can understand you”. My sister pipes up, “The dog keeps farting”.

My switch on video isn’t online. I’ll tell you what happens though. I’ll write it down here.

I look a bit like an LSD volunteer from one of those 1960s scientific experiment films in my activation footage.

switch on

The audiologist finishes the initial tuning and says she will switch on my processor now. At that moment, my mum is signing, “Shall we recite some Shakespeare?” She doesn’t. The switch on happens in stages.  I laugh at my own voice. I look like I’m having a ‘far out’ party in my head. I’m struggling to find the words to describe the rapidly evolving, crisp robotica soundtrack that only I can perceive. I say, “Carry on talking, so I can see if I can understand you”. My sister pipes up: “The dog keeps farting”.

That’s my big switch on moment. “The dog keeps farting”, and in the video I look down at my mum’s Hearing Dog, disappointed at her lack of occasion. I’ve been going all the way deaf for 20 years and that’s the best you can do, dog? Call yourself a HEARING dog? Maybe she felt threatened, so resorts to detonating pre-emptive terror-stink strikes. She farts silently and scratches herself rhythmically -like a disinterested jazz percussionist from another (robot) world.

At my switch on I still had to lipread everyone. I couldn’t understand them without repetition. However I felt massively relieved that I could hear ANYTHING. I knew that switch on was always the “worst day”. But it seemed pretty fun to me.

And in the footage I try to describe what I’m hearing to the people in the room, I say my mum’s voice is like an electronic bleep dripping into water. My voice was a C3P0, a Sophie and a darlek all rolled into one and I explain that I’m speaking in a tin room and everyone else is very far away. My family and friend were quite incomprehensible through the barrage of special effects set off by my brain as it improvised squelchy, bleepy electronica off the back of the new input.

Then I describe to my family how my voice is already starting to sound recognisable to me. And my sister tells me this is good, it’s fast progress. I remember thinking; maybe we can start to feel hopeful now! It’s working!

Then I try to look away when my mum speaks, to test if I can hear without lipreading. But she stops speaking every time I look away.  We are laughing, it’s impossible! My mum says, “It’s deaf culture, if you look away, I stop talking!”. So the audiologist starts speaking to me instead, with me telling her how much I can understand, and she gradually ups the volume. Then the video stops. I felt rather daunted at that moment. Everyone was hard to understand on the first day. Now, 8 months on, everyone is pretty easy to understand.

After switch on, my mum, sister Cathy, friend Kate, the dog and I walk to the park nearby. I phoned my husband at work. Incredibly he sounded like him for a few seconds before his voice pixellated into a white noise of squelchy bleeps and we had to hang up. I was amazed. I was totally deaf but now I could hear on the phone.

Before my surgery people told me not to fixate on switch on. It’s the worst day in the process. But I went through a phase of googling for CI switch on videos where you can see a light go on in someone’s head. I didn’t find very many. The switch on begins with several minutes of listening to nothing but hearing test type bleeps at different frequencies, and that contributes to a sense of boring anti-climax. Your ‘first ever’ noise is an audiogram style bleep. And then you can’t understand much of the ‘real world’ right away, because your brain isn’t used to the implant signals yet. It’s kind of frustrating. I wanted the audiologist to carry on tuning me for hours. But we had to give my brain time to learn to work with the CI.

Watching switch on videos on YouTube in the months before surgery didn’t help me. They made me cry. I realised I was torturing myself because every time I watched someone have a successful switch on, I told myself that that would NEVER be me. My CI wouldn’t work. It worked for them but mine would probably fail. I had no scientific proof that it would fail, but that’s what I’d decided. Then I decided to  stop watching the videos and embark on a series of healthier,  more constructive activities which allowed me to escape that old devil called ‘self-destructive anxiety loop of doom’.

Maybe I should post my switch on video online. Maybe the hearing dog farting, and mum refusing to speak to me unless I looked at her, and me not really hearing what anyone is saying, maybe these things will help someone, somewhere one day in some way. But I prefer to write about it instead because I know how to tell it.

 

 

 

 

 

Unmasked

Since I regained my hearing, non-signing hearing people have opened up to me, and there has been a lot of new bonding with people, some of whom I barely know. It is quite intense, the increase in human intimacy. And I have to admit, I’m fearful of it.

Previously I was only regularly intimate with a handful of people. This includes people who can sign, such as my deaf mum, deaf sister, and my hearing husband and friends who I persevered with, and who persevered with me.

Back in the days when I had real hearing, I’d could share and receive personal intimacy verbally. When I was deaf I was intimate by email with some friends, or else some people would sign.

When I talk about intimacy here, I don’t mean sex. I define intimacy as sharing deeply personal details, and being trusting. It’s something that involves social risk and vulnerability. Intimacy happens in an unplanned way, and can occur suddenly in a conversation that begins with quite mundane topics.

Hearing people can fear intimacy too. Maybe that’s why the scripted environments of global branded shops and services are so successful. The arse-clenching gamble and potential humiliation we fear in face to face social interaction and consumer activities is something that branded chains of shops, cafes, gyms are geared towards removing. You pays your money; you accept the downside of global, high street uniformity and soulless, formulaic, professionalised service as a fair trade for the warm and comfortable predictability that does not unsettle the wounded depths/ shallows of your soul/ego.

However, for me, the predictable comfort of branded chain formulas was in fact uncomfortable. The consumerist exchange dialogue was something I had to learn through a process of awkward repetition. The chain outlet patter differed from brand to brand, the “do you have a loyalty card”,” a nectar card”, “do you want a bag?” “Do you want milk?” “Do you want ice” “do you want a school token” “do you want a blah?” “blah blah?” and “Blah blah bla – “I said have a nice day!” Sometimes I’d just hedge my bets and say no. It wasn’t always the right answer.

If they had to repeat something like “have a nice day”, their face would betray they were repeating a really obvious and mundane, scripted comment.

So if intimacy was tricky, the consumer antidotes to the time consuming risks of intimacy were also a headache for me.

On the rare occasions a waiter or shop assistant would sign “thank you”, I’d either blank it before I realised what had happened, or else feel an urge to lunge over the counter and give them a hug.

In my social life, when I was going deaf, I initially liked to butterfly and bluff. Then when that became untenable I had to learn how to enjoy my own company. I also acquired excellent deaf friends and used internet social networks.

After my implant switch on, I regained most of my long lost hearing and learnt new things about old hearing friends. And about my family, some of whom I barely knew. I heard how some people in my family really sounded for the first time. Everyone was and is happy, including me.

But the increase and expansion – the explosion – of intimacy to include people I don’t know well (including family), feel unexpectedly disturbing. I like it, I know it’s good for me, but it is simultaneously unsettling.

I sometimes feel inadequate and unprepared. I sometimes want to cringe. What’s wrong with me?

I panic inwardly, this will all end in tears, it surely must. I’M A DEAF PERSON GET ME OUT OF HERE THE HEARING PEOPLE ARE COVERING MY FACE WITH PERSONAL DETAIL SPIDERS.

Some residual warning is triggered in me. I’m filled with a sense of dread. What’s the worst that could happen? My neural pathways must be hardwired to get out of conversations as soon as possible, to avoid lipreading fatigue maybe? It’s a redundant dread these days, because I don’t always have to lipread. I no longer get tired from following speech.

It feels like quite a responsibility to listen to all the personal details that people share as a matter of course, as a way of human bonding. I’m fearful I might make a mistake, or not listen with the right sort of facial expression. Because humans give so much away in their face and eyes.

So, it feels hard to let my guard down on such a regular and spontaneous basis. Or I forget to do it. I’m not sure how much I’m allowed to talk. I’m not sure how much other people are allowed to talk. Are you allowed to stop them? Sometimes I don’t talk at all and I can feel myself disappearing, and so sometimes I jump in too much.

I’m surrounded by lovely people overjoyed to be able to make contact at last, now I’m returned to the hearing fold. But as I said, sometimes my neural pathways are on high alert, as though my brain’s old department for deaf and hearing world relations is desperately trying to justify its continued existence.

I went to an East German castle once, about six months after the Berlin Wall came down. The communist soldiers stood around over armed, under used, having a fag, cluttering up the pretty gardens.

Maybe some of my sense of dread is a left over default mode. If a police force or army isn’t needed, it tries to invent scary sounding threats to justify continued state funding. My metaphors are a bit jumbled here but it’s like I’ve got some left over defensiveness clattering around my psyche.

I’m like a neurotic rescue dog and my family and friends have some serious patting to do before I come out from under the armchair where I’m growling and chewing my special bone that is no one else’s but MINE and if they carry on patting me I will go a bit bitey and everyone will see how bad I am and the hospital will have to take my implant away and I will be deaf again.

There is also another, maybe sour and almost bitter thing going on – another unhelpful thought I have to bat off during some conversations.

If someone says “It’s so good to be able to finally speak” I agree, because it is. It feels good. But at the same time my internal defence force wants to step in and protect me – as if to say, “They couldn’t be bothered to talk to you properly before so why should you bother listening now?

I mean, they’ve just said that they gave up on you. That you made them feel sad, it was sad to be with you. What gives them the right to deserve to enjoy the benefits of your new hearing?”

But in a more positive light, the feeling is bittersweet I guess. Or a happy ending clouded with unnecessary dread, or some kind of imposter complex. Occasionally when I’m besieged with candid personal information I feel like a fraud. How can you trust me with all this stuff? I’m not one of you. I’m only just back from the Deaf Wars and I’m not what you think!

And then I remember that I also played a big part in being a stranger to people. For example, sometimes people would ask me “how are you?” and I’d reply at length, they’d listen politely and then I wouldn’t return the favour, or else not be able to hear a reply.

Is my fear of intimacy caused by my deafness? Or was it already there, and allowed to flourish unchecked when I went deaf? Did it become a useful tool that also served to alienate me from potential intimates? Did my fear of intimacy spread like a rash to all my relationships as I went into shutdown? I remember being open. I certainly share fewer details about myself than in my 20s. Maybe that’s part of being grown up and polite. I haven’t been switched on long enough to find out.

All through my 20s I told people my hearing wasn’t getting worse, even though everyone could see it was. The destruction wreaked by years of denial took their toll and I fell into a depressed fug one summer. The reality hit me.  I told one friend I couldn’t remember how to do my personality anymore. Friends organised a 28th birthday party for me. Everyone came. They made a cake. They cared a lot. They were amazing. But I knew these days were numbered.

I didn’t get organised about my hearing loss until my 30s. But getting professional help was, ironically, an invasion of privacy. It is an oddly intimate relationship. Looking at one face all day, often a stranger’s. Some hearing colleagues very occasionally commented, that it put a wall up between me and them. When they talked, I was looking at my interpreters face or a laptop screen. “It feels weird to communicate with you through someone else”.  I’d think, ‘that’s your best bet, so deal with it’. But I suppose, my averted eyes for many people, might appear an act of passive aggression, a rejection of intimacy and human bonding.  Actually, it does feel a pretty safe place, watching an interpreter or a screen and using the time delay to make considered responses. But these highly trained professionals allowed me to be more part of the world, and closer to people, not less so – at least at work.

So I let total strangers into my strange career. Fortunately it was usually a positive experience, so long as I stuck to the rules of engagement – booking preferred interpreter enough in advance, sending out briefs, scripts, notes, employing co-worker interpreters for longer shifts, arranging enough rest breaks, informing colleagues on how to work with an interpreter and so on, so long as I did all that, my support workers enjoyed working with me. They often enjoyed it even when I didn’t!  I had a real person, with me, all the time on most jobs. Can you imagine?

After a few newbie hiccups in 2005, I learnt how to work with interpreters, my sign language got better, I learnt the rules so I could make sure I wasn’t abusing my staff, not breaking their hands and minds – because terping is tiring and brain cell-destroying like lipreading. This was the new me. The organised me. Spontaneity was better if it was pre-arranged. I settled into my new shell. But the interpreters didn’t become very close friends. I wasn’t that type of deaf person. I wasn’t that type of person. I had boundaries.

So anyway – this fear of intimacy issue I’ve been noticing. I know this sort of fear can be due to childhood trauma. A therapist – if I’d ever been able to follow one – might have said something about my parents splitting up when I was six, that sort of thing. It is possible it was always there. and I was in denial about that too.  Bloody hell. where does it end, you know?

Although losing hearing is widely known to result in people becoming withdrawn. It’s very important to point out that this is probably just me that became more fearful of intimacy at the same time as going deaf. Not all deaf people will be blundering around in the world with the emotionally repressed social skills of an Old Etonian. It’s just me okay? There are plenty of magnificently warm and generous deaf and Deaf people around who will warm the cockles of your heart.

And it’s important to note that I probably don’t usually come across to others as very intimacy phobic. I worry that some people confuse my self-protectiveness – or whatever – for what they call ‘cool’. I’ve been accused of being cool in the past. Well sod that.  At the heart of every cool dude is an anxious individual too scared to love.

Writing this reminds me of a conversation a friend relayed to me (after the fact) about 18 years ago.

Friend A: Why do you like Sophie?

Friend B: Well because, well, essentially she’s an enigma.

Friend A: She’s not an enigma! She’s just deaf!

I was still hard of hearing back then. And I’m not sure if friend A definitely used the word ‘just’.

But anyhow, on reflection, maybe there was a grain of truth in these flattering remarks– although maybe not for the reasons Friend A meant.

Friend B also once told me, that in genetics, that it is difficult to tell the function of anything until it malfunctions. So if you want to understand an enigma, you must first see it malfunction – e.g. through a mutation.

My deafness is due to a genetic mutation. What does that mean for my understanding of my function? I’m not a gene, I’m a person, obviously; but why not try and Dawkins this up a bit?

Crudely speaking, did going deaf allow me to understand my function? Did my hearing loss cause me to malfunction and therefore understand my function?

As my hearing regains its function, what function does my deafness have?

Against nature, against genetics, I feel like the excision of my deafness – for argument’s sake let’s call the hearing loss the malfunction – although I didn’t consider it as such, deaf and proud and all that –I feel like that reversal of the “malfunction”, to make my auditory nerve re-function – this miracle Is allowing me to unravel the enigma that is myself.

And sometimes, not always, thanks to the easy access to intimacy with the hearing people in my life, it feels like the re-functioning of my hearing unmasks me. And I feel shame. It unmasks me to others. It unmasks me to myself.

But this is okay. It’s not a down side. It’s all A okay.

Access to racism and sexism

Its five months since my cochlear implant was activated. I’m bowled over at how being “hearing” again has expanded my potential as a moral agent in the world. By which I mean – I have better, instantaneous,  access to spoken information which enables me to make my own decisions based on notions of right or wrong.

That isn’t to say that as a deafened person that I didn’t have moral agency. But it feels like I’m having to make more moral choices or that I’m coming up against a wider range of moral dilemmas more often.

To give a couple of the most obvious examples:

  1. I now have regular access to racism. Before I had to struggle to get access to people’s racism, and even then I wasn’t sure if I hadn’t just ‘got the wrong end of the stick’. But now I can hear people’s spoken streams of consciousness, I can join up the dots, and sometimes it’s just blatant. The culprits probably don’t think of it as racism, but I sure as hell do.
  2. With my CI I have full access to sexism. I’d also presumed in recent years (coinciding with me reaching the  profound and total deafness threshold)  that my married status had cloaked me with a sort of ‘off limits’ respectability. Something about me had altered to deflect unsolicited sexual advances (and don’t get too excited because I’m mainly talking about drunk tramps or workmen shouting “Alwight darling?” or drunk men scatter gunning inaccurate compliments at exhibition launches: “You look like Sophia Loren”.)

However I now realise my hearing loss had been protecting me from this sort of thing. The only shouting I heard on the streets when I passed through some sort of indefinable ‘atmosphere’ was that of what I assumed was my own clamouring paranoia.

The usual shouted or mumbled ‘compliment’ isn’t something that people want to repeat, especially not five times and then have to rephrase it. Looking back, maybe all those times I’d ended up cornered at parties, answering questions about why British Sign Language isn’t international and so on, maybe that conversation had started off with a wholly different topic:

e.g. “You look like Blah bluh bloh”

“Pardon?”.

“Nothing…I mean…what sort of music do you like?”

“I’m deaf I have to lipread you.”

“Really? My cousin is deaf. She signs, I don’t sign, do you sign? It’s a beautiful language I’ve always wanted to learn to sign”

“You can learn at your local college if you google BSL Level 1 class”

“Is sign language international?”

“No”

“No?! But that’s mad. It should be international”

“It’s not international, every country has its own sign languages and dialects, like spoken languages do.”

“They should make it international”

By the by, I’ve written a similar vein of dialogue in a new play script I’m working on. “Is sign language international?” is a very imperialist question don’t you think?

What if you applied the same logic to other, spoken languages?

“You speak English? Wow. I’ve always wanted to learn English. They should make it international.”

“They did”.

Or how about:

“Wow German, is it international? No? Why not? It should be international. So should Mandarin, they should totally make Mandarin international. Crazy not to”.

Or how about,

“Is Esperanto international?”

“Yes”

“Great, I will learn Esperanto, that will be really useful.”

Anyway, hopefully the above digressive rant should iron out any confusion on this question for all time. Oh hold on…

Back to my earlier point…It had been so long since I had to react to anything more than my husband dutifully telling me I looked beautiful or a friend telling me I looked well, that the surprise of hearing random chripses from strange men leaves me cringing inside. But maybe that’s a reasonably blanket reaction – whether you’re a cyborg or not.

The first time I heard a tramp shout out to me in Victoria Park in London, I thought maybe my CI was making it up. Then a week or so later, in Leytonstone, a mechanic on a tea break did a shout out as I walked past the garage.  Clearly my CI wasn’t making stuff up. I was so surprised I said, ‘hi’ as I walked on. I felt foolish, then thought -‘ ha! back in the game, what!’, then ‘no, that’s not what I’m after’.

Now when I come face to face with any cringe worthy sexism, I think this – if only I hadn’t spent so many years with de facto immunity to this sort of thing, maybe I’d have thought up some good comeback deflector lines to ensure that I’m not bolstering the imperialist, white supremacist capitalist patriarchy by cringing and smiling with embarrassment like a simpering drip.

This is what I mean when I say my moral agency has altered. I can be clearer now that something wrong – or right –  has happened. Or I can investigate things more easily if I think something needs sorting out or better understanding.

Going already

As a deaf person my everyday moral agency often became focused on issues relating to my deafness. My main aim in many of the social arenas was to get out of situations as soon as was politely possible because it was hard, because the noise was horrible, because I was wasting my time etc etc. I had to get out quick before I got to the point where I’d have to spend a while getting over the depressing fact of my inability to understand the spoken form of that beautiful and very international language of English.

I’m trying to explain the before and after CI difference. I’ll be honest; pre-implant it was in some respects “easy” to float around not becoming too involved. It was easier to butterfly than to engage with people in depth. It was easier to talk about myself and maybe get the bare basics from others. There was little investment required other than the immensely fatiguing skill of lipreading – a massive brain killer. There was no way I could understand a load of spontaneous, racist or sexist information and then react to that in a way that I’d feel comfortable with. To me, the world presented as  anti-deaf, but it rarely revealed itself as racist or sexist in the verbal sense – although I could certainly see structural racism and sexism.

Racist tourist information

On holiday in South Africa last month, I was treated to a few instances of racism in guest houses. We were advised to avoid bathing on such a beach or lake on the bank holidays because “it will be full of coloureds drinking” or “it will be packed with blacks drinking”.

Wow. Having missed the opportunity to question such a comment last time round, the second time I asked, “What will happen if we go to the beach?”

“You will have an experience and you mustn’t go. You’re just not in the right bracket. I can see you’re doing a face like you’re thinking I’m wrong but the beach is a no go area on New Year’s Day for people in your bracket”.

Beach army

That particular beach felt rather militarized, with camouflage uniformed security guys riding around the sand on quad bikes (we saw one guy being “arrested”),  and searching cars for illegal beach booze. The only thing that we saw drink-wise was black families filling bottles with sea water and sand which they took home to drink and vomit up as a detox cleanser. I never heard of this before but found out it is common.

Pre-cochlear implant I had a preference direct information rather than vague, manipulative sentences that imply things. Quasi diplomatic beating around the bush was annoyingly confusing. I suppose if I’d visited this guest house when I was deaf and been told not to go to the beach because I was in the wrong –

“What – wrong what? Black people doing what? What black people? A lot of them?  A lot of black people – where? On the beach? Oh, great – not great? Why? Oh, drinking, No I won’t be drinking on the beach, what? …”

… I indeed might have been confused by the vague reply, by the implied racism in the words ‘having an experience’ and  ‘wrong bracket’. I wouldn’t have understood the word bracket at all – too weird and random. In fact the word bracket would not have have come up as I wouldn’t have asked her a question.  I might have noticed odd body language and the guest house manager’s pointed – we both know this is the REAL truth – facial expression, but been unaware of  the tone of voice that assumed that I too would be frightened by the thought of being in the minority on a beach, race and class-wise. Worse still, I might have nodded and smiled! I might have smiled and nodded at racism by mistake.

After the manager had gone away I might have consulted my husband, who would have said, “She said we shouldn’t go to the beach as it would be crowded with black people. She was being racist”. If my husband didn’t give me that information (and there is no way I think he would have been able to interpret it to me at the time), my moral agency as such (deciding whether to avoid a place on the grounds of irrational racial prejudice) would have been delegated to him. Alternatively I’d have just decided to go to the beach with a vague sense of unease that the guest house owner had told me something negative about the beach which I didn’t fully understand. Or if I hadn’t understood her at all I’d have gone to the beach in blissful ignorance.

In truth what usually happened on past holidays is that when my husband and I arrived at guest houses was that the manager would chat for what seemed an eternity to Tom, whilst I waited. Whilst I looked at things and tried not to look rude or too mouse-like. At the end of the spiel Tom and the guest house owner would turn to me and ask, “Any questions?” And I’d try and think of a question, which would then usually turn out to have been already answered.

Not all South African guest house owners give racist tourist advice, but I suspect a good few do. What is disturbing is that they should believe that this advice is not only necessary but welcomed. The assumption and maybe the truth is that many white tourists expect and welcome this sort of advice. “Do check out the local Boer War museum, don’t go swimming in the beauty spot, it’s full of blacks”. Shame, as they say in South Africa.

Racism and ropey chat up lines aren’t the only area where I find myself less impervious. Racists and sexists excluded, the fact that I can get to know hearing people more deeply, quickly, means that I make more decisions based on knowing or on trying to find out what the other person’s needs are – rather than acting in a self-protective way – as I say – getting out of there (wherever) as fast as I politely – or as I often feared – rudely could.

All these parenthesis and awkward brackets I’m bombarding you with – I hope – give you a sense of the sense I have of ploughing a long neglected field. I have to keep stopping and working on stuff. Some sort of analogy like that.  I used to over think things when I didn’t have enough information but now I have the information –well! I have a lot more to chew on.

This moral agency idea might seem a really dodgy thing to say, as though deaf people are not capable of it- which isn’t the case. After all, information comes in many forms not just spoken. Deaf people can consult multiple written and visual sources. But I do find I’m now getting more information from and about people than before – through speech.

Pre-implant, I sometimes intuited that something was up, felt a sneaking sense of unease. I’m now finding out I wasn’t paranoid, I wasn’t having an overactive imagination. It’s great. I generally have less anxiety, less of a sense of powerlessness, and this has a noticeable effect on my physical well-being.

When I was first switched on I said was glad to be able to hear the barrage of information humans excrete in abundance. Friends said – “People talk a lot of shit don’t they! Isn’t it boring!”  World weary hearing people do believe there are some things you’re better off not having to hear.

It can indeed be irritating and annoying listening to some of the infernal human guff,  but I stand by my previously stated belief that there is a lot of information, it comes at speed and it is – well maybe not pertinent – but it feels crucial that I know where other people are coming from, morally, psychologically and philosophically.

Interpreter moral agency interlude

As I mentioned before, I did have access to spoken information via interpreters, pre-implant,  but people often behave differently in informal settings and so perhaps aren’t as candid at work.

And the presence of an interpreter often makes people say out loud “Don’t interpret that!” There is an element of increased self-consciousness, self-awareness and self -editing when I’m visibly deaf due to an interpreter at my side.

I have worked with some excellent interpreters who labour to provide social interpreting at work as they know how crucial this is to advance one’s career. I’m thankful for this for providing a world where I had more power than I did socially. But I’m not going to digress at length about interpretation here.

My CI identity is still under construction and I’ve been  using – on a default setting –  the dusty remnants of my hearing youth, recently rescued from a box in the attic – I’m picking up from the early twenties me  who sometimes did, sometimes  didn’t have a quick  comeback when people said something ‘out of order’. Back then I had a gang of friends with enough wits and self-respect to go round, and we inspired, disagreed with and stuck up for each other.

These days I suppose my peers are probably under pressure from much more convoluted and weighty moral concerns than some bloke shouting ‘phwoar’ in the street. I feel like I have a lot of catching up to do, because I didn’t have all this information before, or I was caught up in fighting to get information all the time, or giving up and delegating.

The main skill I’m trying to improve now beyond actual hearing is of truly listening and absorbing. Maybe deafness helped me with that. But not always.

Maybe I don’t always need to react right away. People want to be listened to, which I already knew but frequently – still –  forget and interrupt. People want to tell their stories. And I might not like what I hear.

But I believe the increase in directly understood information has made me more powerful, independent and secure.  With a bit more practise, and armed with my deaf experience and new hearing, I will be taking no prisoners.

A week of mourning as heard via my CI

I was in Cape Town when Nelson Mandela died.

On Friday morning, when I woke up, Tom pointed at the Radio – the World service was on.  Nelson Mandela was dead. I scrambled to put in my CI.

I listened to the BBC and then local and national stations in SA using my ComPilot and an aux cable.  It seemed too unbearably sad, and even sometimes a little annoying (because I was looking for information about events but so many people were vox popping about how they’d met him once and…). I wasn’t taking in what people were saying anyway.

I had arranged to meet a friend for lunch.  On the way there, I went into a shop – the people there were smiley and acting normal, as though no one had died – and then I walked through the central park (The Company’s Gardens).

I looked at everyone I passed, searching them for signs of Madiba grief. A tiny handful of people were laying flowers on a gate at the back of parliament, where there was a new photo of Madiba tied to the railings. They took photos of themselves next to the flowers. I took a photo of the flowers and Hamba Kahle Madiba photo, and felt like an idiot.

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People passed and sometimes took photos but otherwise seemed unmoved. My lunch friend also found this total lack of Princess Diana-style public grief quite disquieting and disappointing. Central Cape Town was operating on a strictly business as usual basis. People were smiling. The world had not stopped. I wondered what BBC TV news was saying. They probably knew more than I did.

On the Sunday I met with another friend, Pharie, from a Cape Town township (or location as she calls it – an apartheid era word). “People get the bus and train to work from the location and they are all singing Mandela songs”, she told me. She’d passed by a stadium near home, and heard singing but had not gone in because she didn’t feel ready and for her, Madiba had died months earlier. She was trying to get to Qunu on the other side of SA, but all transport was fully booked, so she would go and join her brother in Johannesburg the next weekend, where she said the atmosphere was more manifestly affected. She said Johannesburg became a bit chaotic when the news broke.  Cape Town is a conservative place but Johannesburg is different.

I was getting messages from UK friends and relations telling me it must be amazing being here at a time of historical importance but at first, I was mainly participating in a widespread, quietly disappointed feeling that something wasn’t actually happening. Because in the first few days after Madiba’s death, it wasn’t that easy for all of us to achieve a communal grief ‘moment’ – an urge that seems to be a compelling but maybe irrational instinct sometimes.

SA Parliament had a special session in Cape Town on the Monday however, and things picked up a bit from then on.

I managed to team up with a stranger called Ricardo outside parliament who gave me a spare ticket to the public gallery. It felt like quite an achievement to me. I can now hear people’s accents well in South Africa. When I came here before, I could not hear them – although though I could tell some of them sounded slightly Australian (which is the Cape Town anglicised accent although there are diverse accents here).

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I love hearing people’s different accents here and and once I get used to them suddenly all is clear. I’ve been to a Xhosa class and listened to a ‘learn isiXhosa’ CD which helps me understand some of the grammar people use in South Africa, as well as the rolling R’s.

The guy who helped get me into parliament had a pretty mild Cape Town accent. I sat up in the gallery, in a separate chamber from the politicians. The sound system was not brilliant but I could follow two of the speakers perfectly (they had soft Cape Town accents) and bits of some of the other speakers. All 20 speeches were sign language interpreted very well too, on the big screens, next to the speakers.

At the start of the session we stood for the multilingual national anthem. I watched the interpreters. At the end the man next to me (he was called Neville, I tell you his name as it is significant because it means I heard his name when he told me – a basic listening skill I did not have pre-implant) – at the end of the national anthem Neville bellowed MADEEEBA from the gallery and the audience laughed at him. He later fell asleep during the speeches.

It felt good to go to parliament on my own and be able to take part in something with strangers. I was very excited at being there. I was heartened and impressed that the event was interpreted by interpreters that I recognised from TV news. I know enough South African sign language (SASL) to understand some of what was signed. Some SASL is similar to BSL and the fingerspelling is similar to ASL.

When focussing on listening though, I missed some of the jokes in the speeches (but heard the audience laughing and clapping) and felt disappointed. But later in the week I was able to follow speeches over an outdoor PA in a city square, without lipreading, so it is possible the sound system in parliament was just not that good. I often find that if I can’t follow sound from a speaker, a hearing person will tell me – it was poor quality.

One thing I learnt was just how many different political parties exist in SA. Representatives  from the many parties said their bit. After the 20 speeches, one of the speakers led singing and dancing outside parliament. They sang about three or four different struggle songs. It sounded very good and not for the first time this week, I felt very moved, but unable to tell whether my emotions were about being able to hear well in previously difficult hearing environments, or about the content of what I was hearing.

I think in the end I was emotional about being able to hear and therefore to be with a large group of people in a city and share what they were sharing and experience the soaring, uplifting, powerful singing that for many there was a powerful re-enactment of songs from their political past. A coming together once again. I wasn’t confused and unknowing (apart from not knowing any of the songs – yet), I wasn’t bored. The whole three hours I spent at parliament I found completely riveting.

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Every night since Mandela died, Table Mountain was lit up, with his name emblazoned across the ascent. ‘Madiba’ lit up large, in twinkly white lights – as if to say, uTata, he is bigger than Christmas.

The Tuesday was the heads of state memorial service in Soweto, which is a long way from Cape Town. I watched the start on Sky TV in a café, got bored and left. My Cape Town friend Pharie and my mum supplied me with running text message commentaries. I went to another café and watch Obama and Zuma’s speech. South African TV had an interpreter in a large box on one side of the screen.

What South African deaf people saw of the memorial on TV was a little different to what the rest of the world saw that day. I noticed the fake interpreter but didn’t even register that he was supposed to be a sign language interpreter. He wasn’t using any sign language.I thought – what the hell is that guy doing? It looks a bit strange. Maybe it’s some odd hearing person sign thing, because sometimes hearing people have their own signs.

For example, in the stadium, according to my British sources, the crowd was derisively making the football substitute sign at Zuma a well as booing. And the day before a city worker I’d chatted to about all the extra staff on duty in the streets had done the very commonly used hearing South African sign meaning busy, full, jammed, chocablock. Oh well then, I thought, hearing people need their own signs too.

The irrational way I reacted to the oddness on the podium at the Soweto stadium is exactly what impostors rely on, they rely on the way people do not want to believe the worst. That they don’t pay too much attention, that they explain things away.

I also momentarily thought maybe he’s a  person who has tricked his way onto stage and will soon be dragged off, as someone must surely clock that he was spoiling the slickness a bit up there.

It never crossed my mind that someone whose job it was to provide stadium access, had booked a real imposter interpreter, a charlatan, because he was the usual ANC go-to man for interpreting freedom fighter funerals and centenaries (the guy also crops up on a 2012 youtube video of Zuma singing ‘kill the boers’ at the ANC centenary).

Reading up on him afterwards I learnt that this guy’s CV boasted he’d done Ma Sisulu’s funeral in 2012 (after which deaf people had complained to no avail). The agency he worked for is also reported to charge only £50 per day, a pittance compared to the £80 PER HOUR a real interpreter charges in South Africa (meaning they’re beyond the means of most Deaf people here, even if there were enough of them to go round).

This imposter was doing something very strange, but didn’t provide me with useful information, and so I ignored him. It wasn’t hard to ignore him because the TV footage mainly excluded the fake from shot as there was only room for the speakers and the real, onscreen interpreter.

I listened to the radio live feed on my compilot whilst watching the café TV. The waiters clapped Obama and ignored Zuma. Zuma was booed by the stadium but SABC TV censored this and the commentators avoided commenting on it. But luckily UK friends and Pharie told me about the booing of Zuma.  I couldn’t hear booing, just a lot of stadium type messy noise, and SABC didn’t show the crowds of people walking out on Zuma.

I also later learnt that different political groups were trying to outsing each other in the stadium which is why they were being told off by Cyril Ramaphosa for indiscipline.

After the memorial I had to work and then go to a party in Sea Point. I didn’t give another thought to the fake interpreter. I forgot all about the unexplained weirdness at this otherwise quite boring memorial. One of the perks of my new hearing is that I am liberated from spending hours, days, even weeks or months worrying about interpreter and other access problems or mistakes. I focus on getting positive results and information with my hearing and enjoying being able to hear language, English and other languages.

The next day I went to Cape Town stadium to try and get into the big Madiba concert. People had spare free tickets so I managed to get some for me and three friends. It was another beautiful sunny hot day in Cape Town. I walked along the fanwalk to the stadium instead of taking my car.

I was so excited to be going to my first stadium concert since going hearing again. The atmosphere was thrilling as the stadium filled with people. I was expecting a lot, and when the first choir came on it sounded quite beautiful. A little beautiful to be honest. But not brilliant. Not as good as the singing in front of parliament. Then a band came on, I don’t know who, and they sounded…bad.

My CI doesn’t like stadium noise. I guess it’s a tough one. It was also hard to understand my friends sometimes. But again, as in parliament, as on the TV, this big event was interpreted. Everytime someone made a speech at the stadium, an interpreter stood next to them and was shown on the big screens. They signed clearly so that even I could follow, although I’m not fluent in SASL.

We decided to leave our seats inside the arena and join a growing crowd of people singing and dancing a Mandela song. The crowd snaked round the edge of the arena.I was with one of my friends Yolanda and her uncle (name still unheard properly although I did ask him “Uxolo, ungubani kanene?” Remind me what is your name?),.

Sometimes people in the crowd made contact in a dancey way – knocking me on my back to the rhythm of the song or grabbing my hand and talking to me and although we struggled to hear each other in the echoey racket of the stadium they knew what I was saying when I shouted Ndiyavuya Ukukwazi! (I am happy to know you).

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We changed seats to a different part of the arena where we could hear the music better. It was amazing to hear Ladismith Black Mambazo again. I used to have their tape. But I have to be honest and say they sounded a bit rubbish as well, as the amazing feeling of being able to watch them dancing a bit like Irish dancers (stiff bodies, legs kicking out), and then some of the audience including little kids try to copy them. I could only hear one of their singers well. But apart from frustration that the sound quality was not as perfect as it has been on my ipod, at parties and at a nightclub – I had a truly wonderful time at the stadium.  It was properly cheesily rainbow nation, a lovely warm flag waving Mandela photo placards wielding feeling in a huge building that opened out into the beautiful sky next to the magnificent Table Mountain and setting sun. I didn’t have a flag or a picture but I loved seeing them en masse in the stadium. And everyone looked so happy.

My three friends and I left the stadium and were caught up in a crowd as we surged onto the shuttle bus back into the centre of town. As people boarded they joined in with the singing of a Mandela song (which I recorded). The song went in rounds and there was stomping and clapping so much that the whole bus bounced. It sounded bloody fantastic. People on other buses stared at our bus as they went past, because the whole bendy bus was singing this song and it was very loud. All sung apart from me and a couple who didn’t know the words either.

My friends showed me to a cab rank, after a confusing conversation where I told them I was getting a taxi (which means a ‘minibus to the township’ here)  and I went home, leaving them to catch a taxi (minibus) to their locations (Khayelitsha and Bela).

I spoke with the taxi driver easily. I sat in the back and chatted without lipreading. He talked proudly about Mandela and asked about the stadium concert. At last! Everyone in Cape Town was talking and sharing their Madiba stuff, in the way I suppose must have expected and hoped for a few days earlier. I just had to get stuck in and avoid the wealthy, commercial outlets of central Cape Town.

It was late when I got home. I turned on my laptop to find a lot of messages from UK about a fake interpreter. I briefly read one of the blogs and saw the photo and thought. Oh…NO. No, no no. It was a snowballing twitter then news storm with deaf access at the centre of an event of world note.

In general, access and education for deaf people in South Africa is poor. Many of the advancements made in UK or USA for deaf people have not happened here yet. It is a country still recovering from trauma, still under construction.

However in some ways SA is more progressive than UK. The constitution is progressive. And throughout the national week of mourning they provided qualified interpreters as a matter of course. It found it quite stunning and very inclusive.

On the same day that the fake interpreter embarrassed South Africa in front of the world, BBC axed the interpreter because they wanted to screen the memorial without her. It’s not the first time. The BBC always axes the interpreter at state funerals.

The furore quickly became annoying. Not least because I had spent the week thinking, blimey they are really good at rolling out the decent interpreters when it counts here. I was so impressed. And the fake interpreter fiasco was jumped on to such an extent and in such a way, especially by an internet dwelling section in the British Deaf Community, that it revealed another side to western news an opinion about Africa and also mental illness. I was sad for South Africa. I felt proud of it this week, but the cock up had played into western  suspicions about SA being a dangerous, untrustworthy banana republic run by black people who aren’t as good as Mandela.

Hopefully the deaf organisations here will be able to use the scandal to work with the government to achieve better regulation.

On Saturday I went with two friends to a candle night vigil by the town hall at Grand Parade. They weren’t sure it would be much good when I invited them but they were soon won over by the music and atmosphere.

There were big posters of a laughing Madiba, with an area set up in front of the stage for people to sign the condolence books. Bands played – and this time I could hear them very well. The first group was a Cape Malay choir from the Bo Kaap District. They wore Fez hats and 1950s stripey blazors with white gloves. Their first song was about the bulldozed District Six. The act seemed quite genteel and camp, and someone told me one of their songs was about a transvestite.  The Cape Malay choir music was sort of tinny euro beats at alternating speeds and the singing was 1950s style choir in English and Afrikaans.

As this group sung they suddenly had competition. From the direction of the station, a big crowd of young women (born-free generation) moved across the square and stood behind the audience singing and dancing a Madiba song. It sounded lovely. No one did anything, everyone carried on. The security people laughed a bit. After a while the girls moved off to their next port of call.

In between the bands the MC walked along the audience with a microphone so that people could say a few thoughts about Mandela. Incredibly I could follow everything people said onstage and in the audience, and the MC.

I often had a lump in my throat as the audience said what Mandela meant to them and to their country (not everyone was from SA). Again I wasn’t sure if I felt emotional because I could understand them or because of what they were saying. I found a couple of the people’s comments a bit mawkish or narcissistic, but one woman told a simple, powerful story about herself. “I grew up on a farm in the Eastern Cape, and as you know, life on these farms was….it was poor [her hesitation as she searched for the word made it clear she was making an understatement and cutting a long horrible story very short]. And when I was a little girl I used to think, I wish there was someone who could come and help us and change things and make our life better than this.  And then Mandela changed everything for us. He did what I wished for as a girl on the farm…he made it come true”. Of course, the coda to a lot of what people said was always, of course we have a long way to go yet. But we he liberated us all.

Even the most hardened cynic could not fail to be moved by some of the messages in amongst the teddies and flowers and Mandela artwork and photos lining the railings in front of the stage. It seems inconceivable that until very recently black and white people weren’t allowed to be friends. That there was so much violence on these streets. That the freakishly anachronistic segregation of apartheid is such a recent memory for many people here. Cape Town just seems so…nice.

It is amazing to be able to hear everyone last night. And I could hear them, so well, often perfectly, even though a few weeks ago I broke the main microphone on my cochlear implant. So I have been using the programs that can function using the other two mics on the processor. And it’s been fine, although I have been enjoying slightly less ‘incidental hearing’ as a result. The replacement t-mic arrives in Cape Town tomorrow.

This morning I watched the SABC live footage of the funeral in Qunu – which was fully interpreted by real terps all the way through.  I used my complot to feed the audio direct from my laptop into my brain. It’s a great gadget and means that I could follow all of the speeches (except the Zambian ex president for some reason) perfectly. Often the speakers would change from English to isiXhosa, with the sign ‘terps seamlessly continuing in SASL. I watched them a little but I could also understand some of the isiXhosa words myself, from my beginner lessons.

As Madiba’s coffin was born towards the graveside, I could hear the out of shot military brass band. The parps of the trumpets sounded just right. But kind of I wished I was hearing some of the singers from the bus as well.

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Going hearing

Here is a blog I wrote in mid October 2013 for a deaf group website called Hear2day

I feel euphoric and happy. I’m listening to some music I never heard before on the radio. It’s amazing, beautiful, and it sounds like music used to ‘back in the day’, when I was a hearing person.

Two months ago music was barely on my radar. I’d lost most of my hearing because of my family’s ‘deaf genes’. We start off hearing, and then go progressively deaf from our teens onwards. I started wearing hearing aids in 2004. I stopped actively listening to music around that time too. It became an irritation, not a pleasure. By 2008 I was profoundly to totally deaf. I couldn’t follow speech without support. I had to lipread or use an interpreter. Communication was often limited, frustrating and exhausting.

After lots of tests, aged 39, I decided to have surgery for a cochlear implant. The surgeon said, “We can help you.” It seemed too good to be true. I was frightened about surgery but the operation didn’t take long and I was home the same day. Thirty days later, the audiologist switched on my implant, and to my relief, lots of cartoonish and robotic bleeps and noise streamed in.

Two months after ‘switch on’, it still feels too good to be true. Almost everything I lost, I’m getting back. Tests show I have just below normal hearing. The initial robotic sound effects have worn off and now I can follow speech easily, even heavy accents. People’s voices sound like I remember. I can hear incidental speech without lipreading and catch important information and asides. I can hear people call me from behind. I can follow speech on radio. I can make phone calls to loved ones and strangers. My hearing rehabilitation has been swift; perhaps because I wore my hearing aids consistently after I became severely deaf, keeping my auditory nerve stimulated.

Since ‘switch on’ sound quality and recognition continues to improve. It’s still very early days though. There are some things I find hard to follow – like drama, comedy and TV. I can pick up phrases but not follow the whole story. So I still need subtitles for that. But I went to a talk recently and followed the whole thing. I was amazed!

Now I can even do things that people with normal hearing can’t do. Using a Phonak ComPilot device, I can stream music and phone calls directly into my brain! No headphones. I also have improved ability to hear speech in noise. I have an Advanced Bionics CI Q70 Naida implant, which is programmed with UltraZoom and ClearVoice software. These enable me to dampen background noise and zoom in on speech in busy restaurants and loud parties. This means that often I have an advantage over people with ordinary hearing.

Another good thing about the implant is that my hearing husband no longer has to ask me to speak up in noisy restaurants. I could never do it, even though I was mumbling, my hearing aids made me feel like I was shouting. It had become difficult to monitor my own speech. But now I’m confident about my own voice volume. Moreover, after ‘switch on’, friends told me the inflection of my speech has improved.

It’s quite a shock how different everyday life is now I can hear – but a welcome one. I’ve said goodbye to anxiety and lipreading fatigue. My relationships with hearing friends and family have improved and deepened and I feel more confident and positive about my future in this world.

 

Hearing rehabilitation – week 3

6 September 2013
I’ve been switched on for 17 days.   Last Thursday I went to Book Slam, to test my cochlear implant with some literary readings. I went with low expectations and high hopes. I’m finding that is the best way to proceed with hearing rehabilitation. “I’m going to do something difficult; it’ll be rubbish or brilliant”. Not that Book Slam is rubbish. Plus they always booked a sign language interpreter for me when I went down, which is brilliant. This time I asked them to not book a terp. The compere started talking. I braced myself for that sinking feeling I always get at readings. Of wanting to escape the horrible bluh bluh bluh noise. But I was amazed to be able to follow some sentences by the poets and comedians, even though I was still trying to lipread them around the mic. But although I could follow bits, I couldn’t follow the whole. Maybe it will improve with practise. I don’t see why not. Thabo and the Real Deal also played at Book Slam. There was a keyboard, an acoustic guitar, a vocalist, a drummer. It sounded good! How could this be? A cochlear implant surgeon said in a TED talk that CI users cannot enjoy music. He insisted that music as heard through a CI is not beautiful. That talk was delivered in 2011. I wonder if the CIs are better at music than in 2011?  He said the brains of CI users brains cannot experience pleasure at music. But I definitely did. My brain had a big music happy party. So he’s probably wrong. The music didn’t sound off key. It sounded pretty much how it should sound, even the vocals. I couldn’t follow the lyrics though. Back on my old laptop, Amy Winehouse still sounds like a smurf. Some music sounds bad but some good.  Technical interlude On Friday I had my hearing rehab and tuning at the hospital. The speech and language therapist  said “I want you to know that you are doing very well, you have progressed extremely rapidly and after 10 days you’re at the stage people would normally be at after 6 weeks.” Next the audiologist upped my volume levels across the 16 electrodes. She decided to keep electrode 16 switched off because when she played the sounds (highest frequencies) at a loud enough level, I felt a buzzy feeling in my head, sort of around the edge and at the top. This means that electrode 16, the outer one on the array, is partly external to the cochlear. It’s not a surgical mistake, it’s just that the electrodes are very long and this sometimes happens. Before surgery I was very worried that I would have to have some of the electrodes switched off for this reason, (I read that deafened Americian radio shock jock Rush Limbaugh had some of his CI electrodes turned off because they were shocking him – making his face twitch). But the audiologist reassured me that the high frequencies represented by electrode 16 would now be channelled by another electrode instead, so I don’t lose out with it being turned off. So I think even if there is that side effect, and even if some channels are switched off – it’s fine. I feel fine. The volume is set at the right level now. The audiologist added the 5 programs, clearvoice (for speech) ultra zoom (for hearing one person’s speech in a crowd), general noise (good for listening to traffic), ‘T’ switch (for theatre, cinema and TV with a loop) and back-up mic program in case of t-mic failure. Then the appointment took an unexpected turn. I had an old school audiogram test. This detested test involves sitting in a dungeon with headphones, pressing a clicker as soon as I hear a stupid boingy noise. Afterwards the audiologist asked me in a suspenseful way how I thought I was hearing now. She looked excited. I said I was heard of hearing now. She showed me the old graph, where on the right ear (the lower line on the attached photo) I was profoundly deaf in some frequencies and totally deaf in others. She said normal hearing is 20db and above. She showed me the new graph, an almost straight line through 25db with a dip to 30 db at one point. She said “You have just below normal hearing now and I expect you to improve on that test in two weeks’ time.” I have to confess that cried slightly, and said thank you, as though I’d just got through to the next round on X Factor. Then remembered I had to go to an audition straight after the appointment so pulled myself together. I had to sit with a strong cup of tea in the hospital for a bit. I was overwhelmed.  I wanted Thomas to be there. Just someone to sit open mouthed with. I wasn’t expecting the appointment to be like this. It’s still very difficult to believe this has happened, after all the not letting myself believe it could happen. And X Factor? Hell I could probably win it now. The other stuff. As it turns out the technical stuff can get a bit emotional (see attached), so let’s move on. I’ve been trying to catch up with friends after being away for nine months so I’ve continued to race around London on slow trains. Although I’ve been away less than a year, it does often feel like I’m catching up on nine or more years sometimes. The first thing everyone comments on is my voice. With friends I’ve known a long time, for them it’s like I’m early 20s again – both in how I speak and how I hear. It’s difficult for friends to believe, without seeing it in action. I even had to ask my husband to stop shouting! I could hear that he was straining his voice, when he didn’t need to anymore. When I was deaf and he spoke loud, if he didn’t know a sign, I only discerned a tension in his body and face. A few friends also say they were too nervous to phone me because it seemed too crazy to believe that I would hear them. I’ve been doing quite well on the phone, the only problem is I’m often on a bus or a train and so can’t hear on the phone as well, although I can keep up with more in noise than before. Spending so much time on trains, one day I noticed I’d got blasé about not missing my stop, reading and relying on my hearing to catch the station announcer on the tube. At the weekend I spoke to people in lots of noisy settings. I’ve been very impressed at how gossipy hearing people are. I’d forgotten how much. Previously I just assumed hearing people led dull, limited lives. But there’s a lot going on for them, it’s clear. I also understood speech in noise on topics like art history, books and more gossip. The hardest place acoustically was an experimental music night (Eavi) at Amersham Arms. I got tired from all so much social whirling and this affected my mood and progress. I’ve not had time to do all my hearing rehab homework. And I started looking back. CI users often seem to say, “I never looked back!”. But I’m looking back! Why am I looking back? How will that help? It’s a kind of reverse identity vertigo. I’m going deaf in reverse. At a party I was hearing so much stuff, even in noise, that I went home a bit cross that I’d been missing all that for so long. A lot of deaf people will hear this phrase many times in a lifetime: ‘You’re not missing much!’. Without wanting to sound a sour note, it’s a reassurance that doesn’t console. That’s why I worked with interpreters and palantypists. At the risk of sounding like an over tired grump, It’s now talking and at me in the face on a daily basis how much I was missing socially, and it’s loads. Loads and loads. Even the apparent verbal diarrhoea is useful information to a human. Every deaf person knows that. But a hearing person might not agree. Now that I’ve infiltrated the hearing world with my bionic ultra zoom I can report back that there is a lot of information, it comes at speed, and it is all pertinent. I’ve had spontaneous conversations with strangers, grumbly British conversations, about the stupid queue, about the rubbish air con. I could do this as a deaf person to an extent but they didn’t play out the same way. This week I’ve come away from these inconsequential exchanges feeling overjoyed and amazed that it’s possible. My favourite was hearing a Spanish barrista telling me to bring my loyalty card next time to get an “esstamp.” I can hear accents, and so most of them are now less of a lipreading barrier. I’m still deaf in my head, still transitioning, so sometimes a minor mundane development will crop up and I’ll go into post-traumatic disaster aversion mode. To give you an example: I’ll think  “Someone is coming round and I have to let them in the house! What!? Do they know I’m deaf? I don’t know! Even if they know they probably think deaf people can hear on the phone and they’ll ring my mobile instead of texting!  And how will I hear the doorbell with no pager if I’m in my room? Through osmosis? How? It’s a new intercom system and I need to do a practise run with the doorbell before the person comes round so I know what it sounds like and whether I can hear it. I need to set up a practise run and then a plan B in case I can’t hear it. Then I will need to keep checking my phone and stay near the doorbell instead of working otherwise the person will be outside getting annoyed.” Cocking up letting someone into the house happened many times over the years. Doorbells, intercoms, it was always a mistake to leave that one to chance. But I realised I didn’t have the time to do anything about it this time. What happened was the person rang my mobile to say they’d be half an hour – and I heard that, including the accent – and I didn’t hover by the bell. I just got on with stuff and forgot about the bell. Then I heard it, and recognised her voice on the intercom saying ‘hello sophie’. Hello, come up. So that might sound like a small breakthrough, but one of the many small perks that will free up my time for (hopefully) big new things. Things are sounding natural but sometimes I still hear some bleeps on traffic. The footsteps in station tunnels sound like hundreds of plinky plonky piano notes – kind of repetitive music. I like it. But that will go I expect. People’s speech sounds natural, although with clearvoice program it deadens the sound of the room somewhat. Digging deep into my auditory memory I would say it’s a bit like listening to  someone talk inside a hollow tree. When people are outdoors, their voice will be in a smaller space than that, because the processor is subduing some of the environmental sounds a little. I think that’s what is happening, I’ll have to check that. I don’t know if that acoustic will disappear in time. It does seem to get better and better. After the retune last Friday, speech has more depth and accents are coming through really clear. People sound like them more and more. Only my voice still has a very slight residue of Darth Vader (to me not you). I like being part computer, it feels good, and this liminal state, this transitional period from deaf to hearing, is an adventure.

Hearing rehabilitation – week 1

This account was written on 28 August 2013, one week after my cochlear implant was switched on.
CI2SOPH
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CI2SOPH

What can I hear? What does it all sound like? So much changes every day, over the seconds sometimes. I’m in a near constant state of awe.

I’ve gone from feeling like a happy cyborg, because of off the techno noises I was hearing, to feeling like I’d gone back in time, or entered the body of a ‘parallel I’ – a more hearing me – a person I’d actually sometimes wondered about, and whether she would live life differently to the deaf me? I usually decided the parallel universe hearing me would be a massive bitch, and felt sorry for her even though she was rich and had a yacht and a helicopter and a better career than me.

Now I’ve stepped through some kind of quantum sliding door into this other life of sound, I feel more and more optimistic. The rate things are going I expect to lose the (alas) the remaining robotic sounding effects and acquire more and more naturalism of sound. Things get more natural every day. I’d heard from some CI users that things would sound metallic. Maybe I’m letting my expectations run away with me in my post switch on euphoria, but that hollow metal clank acoustic and vocoder double voice effect seems to be on the way out in most areas. Shit just started sounding real.

The process of hearing rehabilitation has amazed me. I’m astonished by the interaction of my brain with the electrical signals that stimulate my auditory nerve inside my head. Progress since I last wrote has been very rapid. When I went back to hospital on Friday the CI audiologist was amazed. She said ‘that’s amazing; you’re hearing all the sounds already’. I’m sure she has lots of similar post-activation amazements in her job – there is a high success rate with adult CIs, but I can see how this process wouldn’t ever lose its sense of wonder for the people who make it happen. Then she turned up the volume. Five programs of increasing volume to get used to before this Friday.

There have been plenty of perplexed pauses in conversations this week, not because I didn’t understand, but because I did. Listening to whole sentences without butting in to say ‘can you say it again?’, and instead just letting the words tumble in – like I can hear or something. Like one of the dreams I used to have about being able to hear.

I’m a bit rusty on the old quick-fire repartee. I keep reminding myself not to monologue at people, to ask questions and listen instead. At the same time I’m really excited and want to tell people everything I’m hearing, what they sound like, how they sound like a smurf, a robot, how they sound like themselves. As the days go by I’m telling more and more people that they sound like them. But how does the computer, the implant know how people sound? How does the brain know how to accept the electrical signals and instantaneously make Lulu sound like Lulu or Gemma sound like Gemma? So I’m still a bit rusty on the question and answer front. When I listen to friends I hear brilliant news and stories. I laugh at funny things they say, after hearing it the first time, without them having to tell a quip five times until it’s dead, or write it down. There is a new rhythm to real life dialogue. There are so many friends in my life whose jobs and personal lives were shrouded in mystery to me for years. Most people don’t email their updates (like I’m doing now), they talk.

But enough talk and more information. People have written to ask what the implant sounds like and what it does for me. Is it just a powerful hearing aid, or is it a cure? (Kind of both). Have other deaf people been annoyed with me (no! they understand why I did it).  As I said, things change every day so to make itself, I’ll break things into topics. There is loads, so before that I’ll break it into bullet points for people who can’t read the whole, rambling  essay.

Breakthroughs in week 1 as I moved up the program settings.

  • Day one I could understand my husband on Skype without signing and could hear a lot of sounds out and about.
  • Day two I could follow speech in quiet places so long as I faced the person
  • Day two I could understand numbers on the phone – male voices sounded normal, female voices skidded around the register like crazy
  • Day three I could understand strangers in noisy environments, ask directions, hear the price of things
  • Day 2  I managed to convince the squeal of the tube to become one continuous tone instead of broken into rapid bleeps
  • Enjoyed music at a synth club at Goldsmiths
  • Day 5 I could understand the Radio 4 headlines (listening on headphones). Whole sentences jumped out at me.
  • Day 5 speech lost the R2D2 bleeps and gained The Clanger whistle effect – although with the layer of naturalism and familiarity underneath.
  • Day 6 speech more natural and sounded good, with some vocoder.
  • Day 6 Followed complex (non small talk) conversation and jokes with previously impossible to follow Glaswegian friend whilst walking down the high street, sat on roadside café.
  • Day 6 went to party and didn’t want to leave within the first 20 minutes. Didn’t have to pretend to enjoy myself. Didn’t have to struggle and force myself to be confident. Understood what friends and accented strangers said.
  • Made phone calls every day, was able to make arrangements over the phone with male voices but not female voices.
  • Am able to enjoy music. This feels incredible. Some music sounds rubbish, some great. Not confined to tunes I know well, some tunes I know well sound wrong, some I don’t know sound great.
  • Day 3 heard small sounds such as car tyres (natural sounding) on wet roads and the pebbles being dragged back by the sea in Brighton (electronic pebbles) and children’s speech and laughter, whistles…
  • Was able to follow audiobook if I read at same time. And track news stories read out by someone else
  • Able to hear someone coming into the house and up the stairs (always used to be a bit of a surprise).
  • Can follow some speech in car without looking
  • Listened to Elgar’s cello concerto no 5 and it sounded great. Apart from some high freqs which went whistly. This will surely change as I am not fully mapped yet
  • Heard sirens and seagull and planes
  • Next week I hope ultra zoom’ will be enabled on my ci. This is for zooming in at people at dinner party and cutting out everyone else. A skill humans do not possess and is a feature exclusive to the Advanced Bionic Naida processor.
  • Friends told me my speech sounds different. I don’t yet understand what they mean. But it’s all for the good.

Hearing speech

After I wrote to you I travelled to north London on a train. I heard what the platform announcer said over the tannoy. The traffic and train were very bleepy still. When I arrived, I phoned my friend who said, “Oh right, okay, see you in 5 or 10 minutes”. I understood the whole conversation. I haven’t been able to do a call like this in nine years (longer for more complex phone chats). It was my second phone call of that day, the first to someone else had gone wrong when her voice distorted from helium smurf to Barry White.  So I resolved to keep trying, to make as many calls as possible, because some would be good. That evening as we walked in the part I could understand my friend! I still had to lipread but I could follow far more easily. I wished I hadn’t spent the morning indoors on my own – trying ‘not to overdo it’. I was wasting precious hours of possible hearing rehabilitation.

In Brighton the next day, I was very excited to understand a stranger at a bus stop when I asked directions, and the bus driver tell me the fare. I could follow my friend’s voice well, but not in the street. I couldn’t hear the waitress in a café over the counter because of the music. Hopefully future tunings will give me the programs to deal with that. I had similar problems at a restaurant lunch on Saturday, when the waiter came to clear and asked if we’d like to order coffee. Part of my Friday rehab had been about practising how to hear someone asking me if I wanted tea or coffee – but in the restaurant I asked the waiter to repeat five times until my sister (also deaf) signed to me he was asking about coffee. In his confusion at my confusion at not understanding such a simple question, the waiter got in a tangle with the other waiter and they dropped all the plates of half eaten food by our table. My mum’s hearing dog/food vulture moved in and cleaned up, and the splashes off the legs of Barney’s high chair. My sister burst out laughing, realising she now had two implanted rehabbers to deal with (her husband Billy Mager was implanted 9 months ago).

I’ve gone back in time, I haven’t ‘gone hearing’, I’ve reverted to being hard of hearing. Sometimes I can hear and sometimes I don’t know what the hell is going on. My brain naturally prefers to understand speech over lip-reading because it’s easier. So when the sound suddenly malfunctions – because of background noise or the wrong setting maybe – then I tumble back to deafness.

It’s worth noting now that I’m still deaf – more deaf as the implant destroys residual hearing and I cannot revert to hearing aids if the device fails. I still use sign language with friends and family. At night I take off the implant and cannot hear anything at all. But when I’m switched on, I’m like a hard of hearing person at the moment. I remember what that’s like because I went from hearing to profoundly deaf.

I went to a party with the Clearvoice program switched on and had a fun time. I was flabbergasted. Usually at hearing parties I spend my time trying to manage and squirming inside, masking embarrassment and paranoia, working overtime to lipread, and using all the communication strategies to make sure I’m not standing in a corner like a lemon – or standing in a group feeling ignored – often unavoidable. This party I was part of it. I had fun. It felt incredible. I could follow a stranger there with an accent.

I can do things more spontaneously, I feel like in future I won’t have to over plan things and avoid doing things in case I get too tired from lip-reading. I’ve been very social this week and haven’t had the lobotomy after effects of lip-reading which brings a vicious fatigue unlike other types of tired. At the time of writing, people’s voices sound like I remember, but more nasal. I guess this is because the auditory nerve is rehabbing the high frequencies. It’s nearly there. The high frequencies have stopped bleeping and now are just nasal. The acoustic needs a bit of work.

Traffic

In the first 4 days after switch on I was caught up in the noise of London traffic. Consciously and unconsciously I was trying to tame the electronic strings of bleeps that signified a passing car or bus. A few days in and the squeals sound like I remember. I hear the clatter of the train on the tracks and the ticking of the tube escalator as it reels around at the top.

Motorbikes were quick to get their audio act together – farty from day one and pretty much ‘there’ natural sound wise by Saturday. In the park with a friend I heard a siren 400 yards off. Before switch on my friend asked if I was afraid I’d regret being able to hear the horrible noises like UK sirens, but I like them. They’re electronic and I feel inappropriate joy whenever I hear one, because I can hear and recognise them. Buses sounded more rumbly and less bleepy from within as the days went on. I could hear the door bleeps on transport. I could hear people’s accents on the tube, and people asking me for directions at second repetition.

Radio and Music

I can follow talk radio news if I sit and listen but not if I do something else at the same time. The speech skids around the register a bit but I can control it with hard focus. I tried to listen to Kathy Burkes old desert island discs interview on iplayer but either my sound card on my laptop is rubbish or my ci isn’t ready yet. I hear radio better on my phone through headphones. I tried to listen to my Radio 4 sitcom Absolutely Delish: Grazing (still available on iTunes) whilst reading the script but although I could follow it some of the important sound effects (people eating) were missing. I decided to wait until I have more programming to finish listening. I have listened to French radio via iTunes and it was just wonderful listening to my hearing skid around until it fixed on the language and tuned into the Frenchness, although lacking any comprehension at this stage. I also flicked through the music stations and on YouTube (before I realised spotify has better sound!) trying out different music genres and testing old songs.

I was amazed and surprised how good music sounds.

After volume was turned up at hospital on Friday and new programs tuned I went to a synth jam where people played electronic bleeps and music on synths, my brain and implant were very happy. It sounded beautiful and right. I liked this music before I went deaf, but even more now!

If you are hearing and suddenly had to start hearing other forms of music the way it sounds to me at present you might say – ‘ugh’ – but for me, knowing that I’ve only just been switched on, and knowing my hearing will continue to improve in time, to be able to hear the melodies and for it to sound like music, not just a horrible mess of noise. Last night I decided I wanted to listen to Elgar’s cello concerto no. 5 after I’d heard a cello on my rehab sound recognition software. It sounded good, really good. Beautiful. Moving. Like proper music, like a cello. Like Jacqueline du bloody Pre.

I thought of all the times I tried to imagine it from memory. The times I found myself accidentally thinking about how I’d never hear music again, wondering what the new stars like Amy Winehouse sounded like (like a smurf so far). I knew I’d never hear music with much enjoyment again, not without someone asking me if “I could feel the vibrations”, not without my brain collapsing in horror at the disgusting cacophony of discordant audio lies fouling my brain.

In quiet moments I’d run through my memorised track list and play one in my head. Dusting off the old imaginary cassette tape, reeling the tape back in, playing it back until it got mangled halfway through. Half remembered intros and choruses mostly. I would look up lyrics and sing to myself when alone until in 2011 I could hear that I could no longer sing in tune. I would remember listening to things like this cello piece full blast in my school days in my room. I had a deaf mum so I didn’t need to play Metallica to annoy her and assert my right to rule the world. I played Shut Up and Dance records at full volume to no effect back then. No one cared, it was Harlesden and music was played loud with windows open.

Last night I was thinking all this as I listened to the nice cello music. And I wanted to know – why didn’t anyone tell me? Why the big secret? Why didn’t anyone tell me I could hear music again? That this was possible? That this happiness was possible? Was it only recently possible? Was it previously impossible? Why didn’t anyone tell me I was eligible before 2011? Was I really that blinkered to technological possibility? Yes.

And there is so much in the media about the controversy (which is not so controversial nowadays as more born deaf adults go for implantation) and very little information (unless you hunt for it) about late deafened adults who heard before and then regain that, and to what effect. It’s incredible. It DOES, at times, feel like a “cure”. This IS what hearing is like. It is not like a simulation. It’s not a bunch of vibrations in my head that I need to decode. Although there is some kind of audio decoding going on as I rehabilitate. Every day the everyday sounds are becoming less and less artificial. And the CI massive all tell me it gets better and better.

I should say now that even when I met up with the CI user in 2012 whose deafness path mirrored mine; even he said music wasn’t that good with his implant. He has a different make of processor than me, but also, more probably, maybe he had not been as deaf as long as me, or maybe he feels less happy with music one year on. So everyone’s experience and perception will be different. I’m happy though. Very happy and excited. That CI user I met who inspired me to go through with the op was still euphoric about getting his life back one year after switch on. I was suspicious of this euphoric exuberance which seemed to me to be almost evangelical – “Do it NOW!” He said, batting aside all my ‘buts’. I thought it would never be as good as it looked but it is.

I have just had an email from my speech and language therapist who has read my rehab diary notes and says I must take more time to relax as tiredness will affect my progress. So I will stop writing now and take a break. I hope this update gives you more of a sense of what I’m hearing – and not hearing!

Switch on

Before my cochlear implant surgery I searched for online accounts by deafened people. I couldn’t find many by people like me, who’d grown up hearing then done deaf.

When I decided to implant, I never expected such incredible results.  So, I’m sharing a few emails I sent out to friends and family in the first few weeks after switch on.

My background? I grew up hearing, then nearly lost all my hearing in both ears from my late teens onwards. I wore hearing aids for ten years and started using sign language interpreters and palantypists at work.

That’s the deaf me in a nutshell. Here is my first account, written the morning after my CI activation:

My cochlear implant surgery was quick, an hour and half. I recovered swiftly, without much pain or side effects.

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A month later, on 20 August 2013, my Advanced Bionics Naida CI Q70 was ‘activated’.

Immediately following the initial ‘switch on’ procedure, where the audiologist played a series of beeps,  I was able to hear my voice, which rapidly sounded more like my voice as the seconds went by. It was as if my brain was decoding and descrambling some 1990s bleepy electronica and turning it into speech – vocoder style.

When I speak R2D2 similtaneously mimics my words in bleep language. These bleeps will go away in time as my brain rehabilitates to the high frequencies that were missing for years. Speech will sound more natural in time.

After my appointment I called my husband on my mobile. His voice was clear and I understood him (at first but not when he said “I love you” because I laughed before he said it and the sound fragmented from then on). He was away working so later we video skyped and I could follow everything he said without him signing and typing.

The initial, intensive hearing rehab will take a few weeks, I go to hospital for weekly tweaks and rehab sessions. On skype Tom’s voice was crystal clear but with a metallic edge. . I’m exposing myself to lots of sounds, training my brain to interpret the electrical signals that are being sent to my auditory nerve via electrodes inserted into my right side cochlea.

I was with friends yesterday and their voices sounded low in the mix – distant. Frustrating. This was because the CI mapping is not complete. I have to go back on Friday. Sound quality and speech comprehension will continue to get better and more natural.

Traffic sounds like cars made of skidding bleeps, although yesterday after many motorbikes, one sounded farty instead of bleepy. More like a motorbike. This demonstrates the process of habituation.

I can hear everyday domestic sounds well like water running and appliances bleeping. This morning I tried to hear a cat purring but he bit me.

I listened to an audio book whilst reading – that was good and now I’m listening to the Radio 4 Today show, presented by people who’ve overdone the helium. The helium effect is another early days thing. I don’t know what is being said yet, but it’s miles better sound quality than before. It sounds nice! Maybe one day soon I will understand it.

It’s an adventure. Getting implanted felt like a drastic option. But meeting an implanted person who had been deafened like myself, swung it in the end. He said he’d got his life back and had never looked back. He could speak to people on the phone and everything. After many tests, the surgeon and audiologists said unreservedly that an implant would help me a lot, more than hearing aids, and that I would do very well.

It’s tempting to up the jeopardy I faced in undergoing surgery (they drilled into my skull etc). It’s tempting to raise the stakes to you, in order and replicate the magnitude of the ‘journey’ I and others go through with implantation. There are risks, I was scared, but when I looked at the whole thing rationally and took a lot of time to inform myself, and speak to other implantees, it seemed like a very good idea. I’d tried everything else and I still had lots of communication problems.

But it was still tough to suspend my disbelief and believe surgery would work for me, not after so many years of adapting and “managing my expectations” about my hearing, It was tough to dare hope I could reverse what I’d lost. Because to hope is to expose myself to having those hopes dashed, which I eventually decided I’d be fine with. FINE, dash my hopes, I said. I love that all dashing stuff. It’s like music to me.

It would take several pages to explain the emotional back end, or why it was important, and such a block, when everyone is naturally more interested in the switch on results, but I just wanted to convey a little bit of what I was feeling in the last year, in order to give you an idea of how I am now feeling. I haven’t had time to start feeling it in fact. I still daren’t. Not until I can follow live speech in conversation. That’s what I’m after.  Crossing my fingers for Friday’s mapping bringing more breakthroughs.