Tag Archives: hearing loss

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.