Loss
IT DID NOT TAKE ME LONG to adjust to being deaf. Or rather, it did not take me long to realise that I really didn’t want to be deaf, and that – faced with a choice over whether to go gracefully or to yank the building down around my fading ears – I was going to give it everything I’d got. Metaphorically speaking.
On the outside I did my best to sound as if everything was fine. But inside I was hurling myself around the bars of my self-made cell from dawn until dusk, trying to claw my way towards the invisible adversary who I believed had somehow made me deaf in the first place. I knew one thing: I wasn’t going to be graceful about this. I wasn’t going to go quietly, and I had absolutely no intention of being even slightly well adjusted about it. If this was a kind of bereavement and bereavement was supposed to have four stages, then forget all that nut-roast stuff about submission and acceptance. I planned to stick right here on fear and denial with maybe a bit of cosmic plea-bargaining thrown in for good measure. I could be sane and proportionate about this, or I could turn a manageable development into a full-blown existential calamity. If there was a hard way to do this and an easy way, then I was going to march straight towards the door marked bloody impossible.
Of course, at the time, none of this felt like a choice. Something had happened and I’d reacted to it. That reaction seemed inevitable; I didn’t choose to feel terrible about going deaf, I just did. It’s only now that I understand there were other ways of reacting. But when it actually happened, I couldn’t figure out a way to be graceful when all I felt was ashamed.
At the time, deaf meant two things to me: stupid, and old. As far as I was concerned deafness worked on people like social cement – it slowed them up, glueing them to their last conversational footprint, stranding them at whatever point they’d misheard. It didn’t matter what they’d done or who they were, deafness levelled everyone down. Before, they might have been heroes or comedians; now, they were always a beat behind, a joke away from the punchline, two repeats over the moment. They were the ones who trailed along, waiting for a helping hand.
And old people. My impression was that old people were always deaf. As Steve had said, deafness was what happened when bits of you started wearing out. It signified the moment at which people started discarding all the things – sight, mobility, hearing – that once gave them a connection to the world. It speeded the pace at which they turned away from other people or started believing that silent past was better than cacophonous present. Once hearing began to go, it was like watching the cables that tied someone to life snapping one by one. To the rest of the world, deafness was what happened at the end, not the beginning, and give or take the odd issue with dentures or incontinence I couldn’t actually think of a condition that seemed more ridiculous. I was now 28, but that was it. Hearing loss. Deaf. Pathetic. So pathetic that when I told people about it, most of them just laughed.
‘I’m going deaf,’ I said to Euan.
‘What?’ he said.
‘I’m going deaf.’
‘Pardon?’
‘Not funny. Not funny at all.’
‘Quite funny,’ he said. ‘To me, anyway.’
As for the rest of the world, the first thing was to minimise the scale of the problem. OK, so I could hear something through these new hearing aids, but the really important thing was to pretend I could hear everything.
There were various different ways of doing this. First and most obvious was to watch the speaker’s lips. All of us, whether we know we’re doing it or not, lip-read. We don’t necessarily all lip-read well, but we’re aware of following the shapes that someone’s mouth makes. On old movies or cheap film footage, the voice track occasionally slips out of sync with the speaker. Even if it’s out by only a fraction of a second we can see it instantly and feel the effect to be wrong. So I grew used to watching people’s faces, following their movements with what seemed like an almost indecent level of attention. At the time I was quite short sighted and because I was often putting on and taking off my glasses, it became very clear very quickly that I was at least 40 per cent deafer without them on. Without them, I couldn’t see detail – the exact shape of certain words, the tiny shifts in emotional colour.
With my fellow human beings, my best option was to second-guess what was being said. If I was in a work meeting, then hopefully the room was quiet and the discussion would follow certain defined topics. If I was talking to a friend, then I could ask them about partners or children, which would at least narrow down their responses to that particular subject area. And if I really had no idea what someone was talking about, then I’d do my best to pull a full sentence’s sense out of a single word, thus making every conversation a thrilling game of neurological hide-and-seek. If I thought I’d heard the word ‘football’, for instance, I was on fairly safe territory. All I would need to do was say something like ‘So how did the game go?’ or ‘Haven’t Chelsea got a new manager?’ and then sit back, safe in the knowledge that whoever I was with would then talk animatedly for at least four minutes with no further input from me. But if all I’d heard out of a sentence was ‘clear’ or ‘right’, or one of the many other words in the English language with multiple possible meanings, what could I do? Did ‘right’ mean ‘turn right’ or ‘write’, or ‘right versus wrong’? Was it better to make a stab at a reply, or to ask them to repeat? Could I come up with a plausible on-hold response, or was the speaker expecting an answer? Generally, my solution was a journalistic one: just keep asking questions.
The other thing was to push back as hard as I could against the effects. If deafness was supposed to be isolating, then I’d socialise twice as much. If it was designed to curtail work, then I’d work at double my usual rate. If it was going to stop me from doing interviews, then I’d do twice as many for three times as long. If it was supposed to tip me into myself, then I’d be five times as outgoing. I’d stop watching TV and go to gigs. I’d eat ten times the life I’d consumed before.
As for the shame, that was simple. I dealt with that by not talking about it. To anyone. At all. Ever.
Just before the first appointment at St Mary’s, I’d gone for supper with an old friend and told him I thought I was losing my hearing.
‘You’re not deaf!’ he said. ‘You just don’t listen!’
He had a point, and that point had struck home painfully. Maybe I had used my hearing wrong. And maybe it was my fault that it had been taken away. If I hadn’t listened properly, then I deserved to lose the use of my ears. If I’d ignored friends or family when they were in trouble or failed to hear what they were telling me, then this was just the obvious result. If I had behaved like an island, then why the hell should it be a surprise when I became one?
AS IT HAPPENED, it turned out to be a very overcrowded island. Though I didn’t realise it at the time deafness is a very common problem, as is not talking about deafness. Absolute figures are hard to come by because so much is not reported, but according to Action on Hearing Loss (AoHL, formerly the Royal National Institute for the Deaf), there are over eleven million people in Britain with some form of hearing loss – nearly one in six of us. On top of that, there’s a relatively small number of deafened individuals who learned speech young but who became fully deaf later, and who may communicate both orally and with sign. Then there are the 150,000 deafened adults – those who were born at least partially hearing but who developed a severe or profound loss later in life. In the vast majority of cases, that loss is age related. Action on Hearing Loss estimates that 41.7 per cent of those over 50 have some form of hearing loss, and 71.7 per cent of those over 70 do. I was one of the 2 per cent who had lost their hearing young.
That one big hearing-loss tribe contains several smaller ones, though crucially, that 11 million does not contain those born severely or profoundly deaf, unable to hear anything below 70 decibels (in the case of severe) to 90 dBs (for profound), and often known as the prelingually deaf. Current estimates put the numbers of those for whom sign language is the main mode of communication at around 60,000. There are of course as many shades of grey as there are individuals, but if you wanted to simplify things, you could say that there are two categories: the Deaf – the 60,000 – and the deafened – the 11 million.
And most of those 11 million are no better adjusted about losing their hearing than I had been. Admittedly, my hearing degenerated quicker than most, but even with a relatively sedate decline, AoHL estimates that it takes an average of ten years for someone to actually acknowledge the problem. Ten years before they go to the doctor, get themselves tested or find some kind of remedy which works for them – a whole decade spent in reverse.
In part, that denial is because the process is slow. Unless the deafness has been caused by some form of trauma – an event which damages or breaks the eardrum, for instance – most people lose their hearing painlessly. It takes itself away a molecule at a time, fading out like the last contrails of a song, and its going probably won’t even be noticeable. Its absence becomes present only in small markers and flag-days. But the denial is also because of that stigma. Turns out old people don’t want to be deaf either. They too see it as a marker and find it as upsetting as I had done. For them it is also a rite of passage, and they don’t much fancy the implications. Given that daft question about whether you’d rather lose your sight or your hearing most people choose hearing, but when it actually happens it’s not just the loss of that sense that people – of whatever age – have to address, it’s also the sadness of having lost it. Sight gives you the world, but hearing gives you other people. It gives you your capacity to interact, to use the gift of language and contact, to be heard and understood in the world. Take it away and you don’t just remove the simple pleasure of sound, you remove your route through to humanity. It changes the way you work and the way your employer thinks of you. It changes your social life and your cultural interests. Above all, it threatens to change your relationships.
Which is probably why there are so many mental health issues associated with deafness. The incidence of depression is four times higher among those with hearing loss than within the population as a whole, and among the deafened (those with acquired profound hearing loss later in life) it’s five times higher. There’s also a much higher incidence of drug and alcohol abuse among the Deaf, of personality and behavioural disorders, and in some cases of something akin to post-traumatic stress disorder. And, as I discovered later once I started talking to those in the music and military worlds, it isn’t just the victims themselves who are affected. The incidence of depression among the hearing partners of deafened individuals is four times higher than normal, all of which is exacerbated by that ten-year delay in seeking help.
AS STEVE THE AUDIOLOGIST had noted, part of the problem with losing my hearing was that I knew nothing about hearing, so therefore I knew nothing about deafness either. What was I? Was I me, normal, except with hearing aids? Was I someone who was going deaf, or was I deafened, or was I just hard of hearing? Was I looking at a totally silent future, or did I just have this thing called hearing loss, a condition apparently defined entirely by absence?
The only thing I thought I knew about deafness was that there was a distinction between those who had been born deaf and those who had lost their hearing. Those who had been born deaf were, I understood, a proud and distinct community with their own history and politics. Once in a while I’d come across two or three people signing in the street and marvel at the ballet their hands were making. I knew that there were different types of sign language – British, American, French – and that deaf people had a whole network of clubs and working lives completely distinct from the hearing world. I’d always been intrigued by pubs where all conversations were conducted completely in sign.
But the proper deaf-since-birth world seemed a distant elite with no more relevance to me now than the blind-since-birth. I’d had my hearing and I’d mislaid it somewhere, so neither sympathy nor support was due. All those people who, like me, had possessed full hearing and were now losing it – they weren’t proud or distinct. They didn’t have their own culture or community, they were just a lump of people walking around with their hands cupping their ears. So it genuinely never occurred to me to look for help or advice on how to be deaf from the very people who knew most about it.
The majority of deaf children are born to hearing parents, but their outlook in life is strongly affected by all sorts of factors – where they live, whether there’s any Deaf community around them, how their deafness is accepted by others. Within the Deaf community, the merits and disadvantages of cochlea implants have been keenly debated for the past couple of decades. Some see the implants as a ‘cure’ for deafness and a pass into a speech-based world, while others mourn the erosion of Deaf culture and the labelling of deafness as an ‘undesirable’ trait. Having won a long-fought battle for acceptance of a Deaf identity, some see the implants as defeat via the back door. Either way there’s no question that at present there’s a strong and healthy Deaf community in many parts of the country and that the internet has helped to connect many of those who would formerly have been isolated in more remote areas. It’s also true that the NHS treats them as a distinct group with particular needs requiring specialist services.
But those who were born hearing and who consider speech to be their main form of communication are not part of any community. There are no pubs, no clubs and no separate services for them, and since the NHS deems the deafened capable of accessing mainstream healthcare, they’re stuck down in the system along with everyone else. The deafened don’t form strong bonds based on similar experiences and wander along the road for a pint together after work. Pubs hurt their ears, so instead they go home and see no one until Monday. Besides – as I pointed out to myself – what on earth would be the point of a deafened get-together? Most of those who lose their hearing don’t know how to sign, so they have to talk, but the more people talk, the less they can hear. So what then? Does everyone just sit around in padded rooms twiddling their hearing aids and taking twenty minutes to figure a simple one-liner?
In practice, very few of the deafened ever learn either British Sign Language (BSL) or any of its international variants. Like every other language in the world, BSL only works when there’s someone there to speak it back to you. So even if someone who had been hearing and was now deafened was to go to the trouble of learning BSL, the chances are that it would leave them no better off because they’d most probably still be living and working entirely within a hearing world, and unless that person’s family, colleagues and wider social network all learned to sign as well, that person would still be in much the same situation as someone speaking Ligurian in Texas. Thus in effect the deafened become stateless; they’re no longer full participants in the hearing world, but they’re never likely to be part of the Deaf community either.
And when the inevitable happens and the deafened do end up struggling, mainstream mental health services are now so overstretched that those individuals would have to be either psychotic or suicidal before they were referred for treatment. Which means that in the vast majority of cases something which may have started out as a relatively minor issue – mild depression caused by hearing loss – often remains unacknowledged and untreated. So the person’s confidence gets knocked and they find it harder to get on at work, they lose their job or get shuffled down the organisational pack. They push aside their social life or forget about having fun, and one day when there’s no one left except the dog and a great big unlifting lump of sadness, then at the eleventh hour they finally come to the attention of mental health services because they’re standing in the middle of Tesco’s produce aisle yelling about elves.
AFTER A COUPLE OF YEARS of making do with the NHS’s analogue hearing aids it became clear that if I was to have the best chance of hearing well, I was going to have to go digital. As Steve had pointed out, digital aids weren’t then available on the NHS, so if I wanted them, I would need to go private. Then and now, good privately fitted hearing aids are expensive – somewhere around £2,700 just for one, more like £6,000 for two plus the cost of the appointments and ongoing maintenance.
But in 2001 I plundered my savings and – after a further examination – was referred to an audiologist called Jacqui Sheldrake who has been working with the Deaf for so long that she now naturally enunciates with precision, giving each word its proper space. Once every few months I’d make the trip over to her and sit in the waiting room while the lines of sunlight crept across the carpet. Every year or so she would rerun the pure-tone tests and adjust the frequencies on the aids according to the degree of loss. Every year, I would watch the line on the audiograph move a little farther downwards, and every year I would watch the level of amplification keep pace in the opposite direction.
The aids Jacqui fitted me with were relatively discreet. If I was standing face-on to someone they probably couldn’t see I was wearing them, especially if I had my hair down. And because this time around I was wearing them all day every day, I adjusted to them quickly. Having performed its clever neuroplastic magic trick, within three months my brain was already comprehending the filtered digital sound I was receiving as almost-true sound. Once in a while, something would remind me that what I actually had was something akin to an old cassette tape with the volume jolted up, but most of the time the aids just felt normal – so normal I rarely thought about them.
DR SALLY AUSTEN is the Consultant Clinical Psychologist at the National Deaf Mental Health Service Unit at Birmingham and worked at the Royal Throat, Nose and Ear Hospital in London’s King’s Cross for four years before moving north. At King’s Cross, she was working as a clinical psychologist within an audiological unit treating both the deaf and the deafened, but in Birmingham she’s working in a psychiatric unit in which the majority of patients have been deaf since birth. The distinction is critical. Whereas in London she was dealing with both groups, Birmingham is for the 60,000, not the 11 million.
The first time I meet Dr Austen is at her home near Bromsgrove. She is blonde, recently turned 50, and doesn’t correspond in any way to whatever vague prejudices I’ve got about psychologists (dark, elderly, Hampstead). Instead, she lives in a space overpouring with children’s drawings, boots, dog clobber, photographs, food and family life. It’s a warm spring day and when we sit in the conservatory to talk, there’s something obviously characteristic in the fact that she makes coffee for me but in an ice bucket by the windows there’s a whole stack of other drinks – orange juice, Coke, cold water, milk – in case I should want those instead. She folds her legs up on the sofa and talks animatedly for an hour and a half without slipping into medical obfuscation. After a short while it becomes clear that she is both very good at her job and very humane in the performance of it.
It’s taken me a very long time to get to this place. It’s almost two decades since I started to go deaf, and now – long after the event, and long after my hearing has returned – I have come looking for answers. Now, I want to know what happens to the people who, like me, find that deafness has crept in and overturned their life. I want to understand.
When Austen was working at King’s Cross, many of her patients were beginning to lose their hearing and were dealing – or not dealing – with the psychological consequences of that. As I discovered, there really aren’t many people out there who have reacted to a diagnosis of serious hearing loss in a balanced and socially approved manner. Was there a common reaction amongst the people she saw? ‘Yes. Depression. And social anxiety.’ Both of which were exacerbated by isolation. ‘If you’ve got a spinal injury – and I did work briefly in Stoke Mandeville – you have a very powerful experience with a group of people who are all in the same hospital for a long time. So by the time you come out of there, you know what others are experiencing, you’ve got an identity, you’ve got a shared community. But with people losing their hearing, they go to the hospital, then they go away and attempt to hide. And the deafer they get, the more they’ll hide.’
Austen has got used to watching for the ways in which their lives change. ‘I can predict, for instance, what a deafened person will order in a restaurant.’ Like what? ‘It would probably be pizza. Things that they can be absolutely sure they know, they’re not going to go for the complex thing. People losing their hearing lose the variety in their life. They’ll go for the safe option – everything’s safe, because otherwise it’s a hassle. So say if they ordered steak, they know the waiter’s then going to ask them how they like it done. It’s got to be whatever is on the menu that’s completely non-negotiable, non-discursive, because they just don’t want to get into a conversation about it.’
When Austen was able to work with both deaf and deafened, there were things she could do to acknowledge that both groups had very particular issues and to work with them. For those who were losing their hearing, the most effective of all – and the cheapest – was just to listen. ‘Us humans rely on communication, and communication is almost always verbal and audiological. If I could cure the world of loneliness, I would see ninety per cent fewer people.’
At King’s Cross, Austen got used to being able to effect real change – not healing people exactly, but definitely allowing them to feel better about their situation. Now, because of pressure on resources and that distinction between the deaf and deafened, most of her patients have fallen out of the system, so what remains is only the most intractable issues. Faced with so many more urgent demands on its attention, the healthcare system regards this particular branch of their services as a backwater – it’s the common cold of clinical psychology. Everyone wants to work with children or criminals, and nobody wants to spend their daily lives repeating ‘How are you today?’ at ten times normal volume.
I first came across Dr Austen not through the Birmingham unit, but because her name was on a list of contributors in a book on pseudohypacusis, or non-organic hearing loss (NOHL). In unclinical terms, pseudohypacusis is deafness with no apparent biological cause and ranges through a spectrum of issues from acutely traumatised individuals whose capacity to hear has temporarily shut down to those with ‘conversion disorders’ (those who have converted a psychological issue such as depression or stress into a physical symptom) to fakers on the hunt for compensation.
Probably the best known form of pseudohypacusis is amongst those who have heard something they find so horrifying that their brain has temporarily suspended its capacity to hear. During World War I large numbers of soldiers started coming forward claiming that they had been deafened. When tested, there appeared to be nothing wrong with their ears, and yet there was no question that they were unable to process or respond to acoustic stimuli. Many had also become mute. They weren’t malingering, they were just so traumatised that their minds had slammed the gates shut and now refused all sound.
At the time the attitude amongst psychiatrists and army doctors in both Britain and Germany was that anyone who couldn’t prove an injury or illness clearly didn’t have one and must therefore be making it up. The issue, the doctors believed, was not the horror of war, it was a lack of moral fibre in those particular individuals. Besides, so many aspects of ‘hysterical deafness’ seemed counter-intuitive. A significant proportion of those coming forward were not the individuals who had been exposed to the worst aspects of battle. During World War II, many of those assessed by the US army as having psychogenic deafness had no combat service at all and were simply soldiers who had found the whole experience of war (the separation from their family, the army discipline) so difficult that they had lost the capacity both to receive and to transmit. Not that they received a particularly sympathetic hearing – at one stage, the US army’s standard treatment for sufferers of psychogenic deafness was sodium pentothal, a chemical truth serum designed not to address the cause of the trauma but to force the sufferer into confessing that they had made a falsified claim.
I hadn’t realised that there could be situations in which the human brain could just down tools and walk out on strike. I didn’t know that, in extremis, all of us have the capacity to withdraw from one of our own senses. I thought that hearing was involuntary, like sneezing – if a sound was audible, then you had no choice about whether it entered you or not. But behind all those wartime accounts of ‘hysterical deafness’ there seemed something very truthful in the body’s acknowledgement that sound – even sometimes just the sound of another human voice – can occasionally be terrifyingly powerful.
NOHL is not restricted to soldiers and can still be a risk for any victim of trauma. Modern psychiatric approaches would probably involve addressing that trauma and then establishing whether the deafness had improved as a result, or in examining the situation which caused the trauma in the first place. If it was connected to one single, shocking event, then temporary deafness may also have been a clever piece of biological prioritisation. If, for instance, you’re involved in a car crash, then you may well remember the few seconds around the impact with extraordinary visual clarity, but also as an experience completely without sound. At that instant of greatest emergency, the brain has focused in on the senses it most needs, channelling everything away from hearing and into different parts of the body.
But pseudohypacusis is not only caused by trauma. The really surprising thing is just how much time it takes up – Dr Austen calculates that, at any moment, between one and three spaces in her Birmingham ward are occupied by patients who may not be as deaf as they say they are. Of course, someone who can hear fine when they’re out on the street but seems suddenly to have developed a hearing issue when they get to the audiology reception desk is easy to spot. But other forms are not quite so easy, and however much audiologists are on the lookout for pseudohypacusis some do inevitably slip through the net. Because so much of hearing takes place in the brain and because there are many conditions like tinnitus which are totally real and often very traumatising but for which there is as yet no physical test, how exactly are you supposed to pick out one (genuine) person who doesn’t respond to pure-tone tests or to normal auditory stimuli from another (malingering) person whose hearing tests come up just the same?
So is this pseudohypacusis thing really that common?
‘It is fascinating, isn’t it? I’ve had quite a few clients who have deafened themselves. Or have feigned their deafness, but I certainly have a couple who have literally deafened themselves.’
She was prompted to look into the issue in 2003 when she was approached by a worried colleague. ‘An audiological scientist came up to me and said, “There’s something I’m really worried about – I think we’ve just [cochlea-] implanted somebody who wasn’t deaf. And I don’t think they’re the only person coming into our department who isn’t deaf. Or not as deaf as they appear.”’ Over her next study leave, Austen read everything she could get her hands on about the subject – which wasn’t that much, both because the issue was considered so niche, and because no one could ever agree on a definition of terms.
Working with another colleague, she came up with a diagnostic model, and then tried broadcasting that model to her peers. It proved a harder sell than she imagined. ‘At the time that we wrote this, people were saying, “Yes, really interesting, but we haven’t got any of those patients, thanks.” But as people began to understand the concept and what to look out for, they were finding them all over the place, and it’s now getting alarmingly big.’ But why? Why would someone do that? After all, you’ve got millions of people who really overwhelmingly don’t want to be deaf, and then you’ve got a few who just can’t wait?
Austen responds by pulling out an A4 notebook and drawing a big square with two circles on the base line. The one in the left corner represents intent, and the other on the right represents lack of intent. On the vertical axis, she draws a line with one end representing two different types of gain – practical or psychological – and at the other end of the line, no gain. She points to the circle representing intent/practical gain. Those are the malingerers who would probably be after financial compensation and thus would only be deaf for the duration of their audiology appointment. Then she points to the other corner, the one representing lack of intent/gain. ‘The other extreme are conditions like PTSD, conversion disorder where because someone can’t deal with what’s happening to them psychologically, their mind translates the trauma into a physical ailment because physical ailments are somehow easier to deal with. And then in the middle is this whopping great group which is factitious – that’s where it is intentional but it’s almost become habit. Like, “My life is rubbish if I don’t do this, but my life is better if I do do this.” And that might be attention-seeking – people like the attention, they like the company of the doctors, they’re pathetically, horribly lonely so they keep going to doctors’ appointments. And they like the process, the company, the attention. At the extreme would be Munchausen’s Syndrome. So somebody who turns up for a cochlea implant – that’s really quite Munchausen’s.’
But what about the deaf wannabes? Out there, should you be interested, is a whole world of people whose major life goal is either to pass as deaf or to deafen themselves. Look online and there are plenty of sites in which people discuss passing as members of the Deaf community by learning sign or lurking around Deaf clubs and groups. There are others on which the best ways to induce hearing loss are discussed – perforating eardrums, using extreme noise to damage hearing. On both, the tone is either practical (‘this is how you puncture an eardrum’), or lascivious (‘turned on by the feel and sight of myself in hearing aids’). And even within the wannabes, Austen sees a lot of division.
‘Once they became more visible on the internet it became clear that it wasn’t just people who wanted attention within this group, there were all sorts of people. What’s interesting about them is that they’re a relatively small group, and because they’re small they have to put up with each other despite very different motivations. So you’ve got people with a fetish thing going on who either find deaf people sexy or hearing aids sexy, you’ve got people who are quite autistic or on the autistic spectrum for whom noise and communication and sociability are just so miserable that they’d actually just rather be deaf or deafened or partially deaf because it gives them control over the communication space. You’ve got people who are psychopathic who somehow enjoy beating the system. They’re the ones you can see on deaf forums going, “Ha! Did you know that if you do four hours of noise-induced hearing loss at 85dBs, then you get it past the audiologist!” Then you’ve also got people with a body dysmorphia, so in the same way as those who are transgender and who feel that they’re born male in a female body, you can also get people who are born hearing but they feel they’re a deaf person in a hearing body. So people’s motivation is very different.’
How easy is it to spot pseudohypacusis?
‘In terms of me personally identifying them it’s really quite easy because the behaviours associated with deafness – the way someone holds their head, or the way someone answers and communicates, the tone of their voice – are predictable. Based on the tone of someone’s voice, I’d be able broadly to say how long they’d been deaf, or at what age they were deafened. But my job is not to confront or humiliate. My job is just to think, “Well, something has made this person want to arrive here to tell me that, what is it that they actually need help with?”
‘In the early days I used to try and cure people of their non-organic hearing loss, and I’d try and find all sorts of complicated graceful recoveries, and no one ever took me up on it. Whereas because the person might have multiple non-organic things as well – so a not-quite-real backache or a not-quite-real epilepsy or a not-quite-real something else – what I find is that if I work with the person towards accepting who they are, then all those other problems tend to drop off.’