Speech difficulties

Hello. Benjamin Zephaniah was a poet, broadcaster, actor, playwright, novelist and performer. I liked him very, very much indeed. A very big part of what I liked about him was the way he talked, and I mean that in several ways. I liked what he said, I liked the way he phrased things, simply and profoundly. full of analogies and comparisons, often illuminated by stories and anecdotes. I also liked the sound of the way he spoke. To my ear, his daily speaking voice was clearly Birmingham.

but then threaded through it was the sound of Jamaican speech, which, when he wanted to, he could bring out in his performances. Then Benjamin got ill. I didn't see or hear Benjamin in those weeks, but just recently I saw a film of him talking just before he died. It was heartbreaking. His speech was slurred, his face looked swollen and immobile.

his eyes downcast with none of the teasing, larking about look I knew him for. He was finding it hard to speak. Benjamin, finding it hard to speak? Surely not. I won't go into what his condition was, and I'm no doctor, so I don't know what was caused by his condition and what by the medication. The point is that I found myself saying to myself, this isn't the Benjamin I know.

It's a silly thing to say because we are what we are, no matter what physical or mental state we're in. But then, even though I can say that now in a cool kind of way, my first reaction was to turn away and want the Benjamin I knew. I might guess that Benjamin was thinking something similar himself, probably more anguished and more painful than anything I'm expressing here. This is all in the territory of what we're talking about today. I've been reading the book Hard Talk.

when speech is difficult by Jonathan Cole. Jonathan is a consultant in clinical neurophysiology at University Hospitals Dorset and professor at Bournemouth University. Welcome to the programme, Jonathan. Thank you for the opportunity to chat. Well, can I say straight away, Jonathan, I thought your book is one of the few books...

that I read these days that really moved me very profoundly. And I think I know why. You show us in the book one person after another struggling with how they think and speak. Some from birth, some following illness. And in a very calm way that you've got, you show these as people in a battle.

I think that's the word I would use, in a battle with who they are. And I felt it's as epic as anything that a novelist or playwright might have written. That's what I thought. So do you think that this is what this book is about? The big who am I question. Yes, but I'm always reminded of a friend who's an ex-astronaut. And she's always asked, what's it like in space? And she says, this is how I sleep.

This is how I clean my teeth. This is how I eat. Because the big question, what it's like in space, is impossible to answer easily. You need the particular experiences from which you build up the whole picture. Now, my book is exploring the importance of speech in our identity, our social being. So I look at that by looking at what happens when speech goes wrong, when it becomes difficult. And it's by looking at...

losses of ease in speech that you build up a picture about what speech is really about. But then at that moment, we'll come to this, people are confronting a different me because if I can't speak... then people don't know me, and then they don't know me, and then I don't know them, and in that little circularity, I lose my identity. They can lose their identity.

When they have a problem with speech, yes. Particularly amongst those who don't know them, of course. Let's do a bit of what you do in the book and look at some individuals and what their life has been like. And just for our listeners, could you first explain how you came to meet these people? Tell their stories. In some of the clinical work I do, I was working with an ENT surgeon in two conditions. ENT, remind me.

Ear, nose and throat surgeon. Yes. And she was looking at helping those with vocal cord paralysis and a condition called spasmodic dysphonia, where the cords clamp together during speech. And we were trying to determine the best way to treat them. And I would look at them and see the problems they were having, which were way beyond what you might have expected, given the comparatively small problem that they appeared to have medically, comparatively small.

And I thought, well, what is it like to live with this as a condition? And I went up to them and said, would it be possible for me to write an account of what it's like to be living in the position they are? And they said yes, they were very pleased that I should. And then I thought, well, there are lots of other conditions in which speech is a central problem, whether it's Parkinson's, whether it's cleft lip and palate, whether it's cerebral palsy.

stroke aphasia, and they all have different problems in speech. So I thought I might be able to build up a picture by going to lots of different people about what speech does and is and how it defines ourself. Excellent. Now let's begin with the apparatus itself. So in layman's terms, the voice box, the vocal chords, what happens when these don't work as they should?

And I think this happened to the woman called Tess, didn't it? Let's talk about Tess. The vocal cords go, they clamp together and they move apart during speech, and that lets the air through. Sometimes they make a sound themselves, so there's a Z. Sound is vibration of the vocal cords. If they don't work, they can be immobile relatively close together or further apart. If they're...

clamped together, they're short of breath. But it also means they can't regulate air through the vocal cords. So someone with a vocal cord pause, he has to think, how much breath have I got that I can let go? so that I may have a sentence which is only four words say rather than a whole.

paragraph or whatever. They have to ration what they can say and the words they can say according to how much breath they've got. And they're thinking that the whole time. They have to think, is it worth doing this? They may lose volume. So they may not be able to make themselves heard in a busy place. They can't order their food in a busy restaurant. Yes. And this alters their life completely, really, doesn't it?

Yeah, just these two bits of skin that don't come together properly alters their life. Absolutely. One woman said, how does this become my identity so quickly? but an identity which other people see change, but they don't necessarily see change themselves. And our voice is a bit, in a way, you can think of it as a bit like a shop window. It's how we're seen and known in public. If you can't display yourself in the way you want to, we feel...

limited, constrained. I mean, is a voice in a way, it's like a fingerprint, isn't it? Because it is unique. The voice is unique. Amazingly, all our voices are different. With voice, we're actually performing. We're doing something. We're drawing attention to ourselves. The way in which we speak defines us. So voice is performance.

Let's talk about Meg's experience. That was paralysis of the vocal cords as well. And she talked of not being able to say what she thought. Is that right? Yes, she did. That's because... Her breath runs out so quickly. Complicated thoughts she can think, but she can't say them. So she has to always be thinking, what's the important bit of what I say? And can I get it out in four, five, six words?

And I would be Zooming these people as well as emailing them. And the emails would be long, elaborate sentences and paragraphs telling me exactly what they thought and felt. Sometimes I quote them in the book directly. But what they said was so abrupt and short. Because that's all they could say before the breath ran out. Now, it was different for me because I was listening.

And I was so interested in what they had to say. But when you're in a conversation with the to and fro of conversation, there's a flow, there's a rhythm to that. And you can't necessarily interrupt that rhythm by saying something. three or four sentences of four words because that slows the conversation down for others.

Yes, I think you mentioned about Meg and others that people just lose patience and just leave people stranded in a pub, social circumstances, or even in a family because they are well. You know, you won't get much out of her because she's just talking. Exactly. I mean, it changes their ability to converse in a social situation. Sometimes they may...

put their hand up and say, I've got something I want to say. But that of itself interrupts the flow of a conversation, so they might get their timing wrong. We just don't realise how implicitly difficult conversational speech can be. with the timing as well as what you need to say and the way you need to say it. And you're reacting to someone in real time. And if you're 10 seconds later, it's too late. It's gone. It's gone, yeah. And one of your respondents, I think, says how they can't do...

Witchy repartee. They can't come back at people, can't drop in the gag in the way they used to. One-liners have gone. Yeah. And one of them said, well, I can't laugh anymore because I've lost the ability to laugh properly. And quite often in the book, across a wide range of conditions, you also show people describing the way they...

monitor how they speak or indeed what they speak. And we all do that. I mean, I'm doing this now, aren't I? I'm monitoring what I'm saying. So that's a conscious aspect of speech, I guess. But for some people, I think you show it's agonising because what comes out...

isn't what they want to come out. So they're monitoring it, but when something comes out, it isn't right. I mean, I get that sometimes. Yeah, I think we all do to an extent. It is to me a miracle that we can begin a sentence normally when we speak. and not quite know where it's going to end. And the thought and the...

The elaboration of that thought into language and the way in which language and words wraps around that thought as we're doing it in real time to produce something which hopefully is intelligent is extraordinary. But they can't necessarily rely on that.

because they may lose breath or they may not have enough ability to... create the words so they have to plan beforehand what they're going to say and just imagine if we were sitting here and every sentence we said we'd have to think about the whole sentence before we said it But what happens if I say I'm sitting at the, I want to say I'm sitting at the microphone, but I say instead I'm sitting at the, anything could come out, the bicycle.

Well, so Faye, who has a stroke, an extraordinary woman who had a stroke 20 years ago, a severe one, couldn't speak for a couple of months, but then she did. And now she works in speech therapy herself. But she says sometimes she has to brace herself.

because she's not entirely sure what the words are going to be. She might be thinking one thing, but occasionally other words come out. And she described that as being like an uncontrollable dog. Her language just runs off with her. Speech runs off with her sometimes.

So she can monitor it, but she can't control it. Yeah, she knows she's done that wrong, but she obviously can't control it at the time. And she tries to row back and sort of rein in what she said. But sometimes it's really difficult to do for her.

Now, your correspondent Claire, she lost her voice completely and she talks movingly about what it was like not to be able to talk to her children. That was so painful. Claire is a teacher of philosophy in a school and found she couldn't work. because of her condition, which was actually spasmodic dysphonia, where it's a bit like a golf player's yips or a dart player's yips or writer's cramp, where the ability to control movement of the vocal cords goes during speech only.

So her vocal cords would jam together and she'd talk in a very straight way, which is like Robert Kennedy Jr. does. Oh, yes. The Secretary of State for Health under Trump. And she spoke movingly about the difference between what she can think and what she can say. So she says, my thoughts are sometimes deafening, a consequence of being unable to express them.

The extraordinary aspect was the relationships between my thoughts and their expression. One is eloquent and fluid, the thoughts, and the other laboured and slow. She can only really communicate authentically with herself because of that. And she talks about how this is claustrophobic because she's trapped inside her thoughts. But that's the sort of intellectual aspect of it. But the worst thing for her...

was the relationships with her children because she couldn't talk to them properly. And she talked about they need a mother to speak with, to consult, to help and to laugh with. And with her husband, she wonders if she's the same person that he married because of this. Yeah, it almost feels like solitary confinement. It isn't, because obviously there are other forms of social interaction.

It's this terrible feeling that you're blocked as if there's a wall between you and the other person that you've created. And when we talk about walls between people because people don't want to talk to you, that's a different thing. But when you've got a wall that you've created...

created and suddenly you can't we say spit it out don't we we use that expression you've got a person who has problems with speech and strangled speech but you have to ask her what's it like to live with that in order to understand what she told me because otherwise no one would have known that she wouldn't have said it so you know that's why i think it's important just to try and understand what it's like to be the other person

Now, of course, laced through nearly all the book are people's encounters with medics, therapists. In the end, I came to feel that really these encounters are part and parcel of the conditions themselves. So to start off with. There's all the naming. I mean, you've done a bit already. I mean, I love them. Spasmodic dysphonia, non-fluent aphasia. But then there's this tortuous kind of spiral of whether the patient can describe their condition.

whether the medic or therapist can describe it back, sometimes better. I can well imagine you might do it sometimes better. And what language do you use when it comes to remedial therapy? So how do you see this? Am I describing it right? A kind of spiral between... I think you are. The conditions that I've talked about, most of them are very rare and many doctors won't have seen them.

let alone know what they're called, so they don't recognise them. You mentioned spasmodic dysphonia. Jude took two years going backwards and forwards to ear, nose and throat doctors, and they couldn't find anything wrong. And at that point, she had this severe problem with speech, so medicine had completely failed her. So in a way, because it doesn't exist in language, it's almost as if it didn't exist.

She'd been told it wasn't anything, but it was interfering with her life hugely. And it was a couple of years after that that her 16-year-old nephew saw someone on television with the same condition. And he rang his aunt and said, I think you've got what he... got so she turned up to a surgeon who knew a bit about it said oh yeah you've got spasmodic dysphonia and that was the first time she understood what the problem was because he explained it to her yeah and offered some treatment

But it had a name. It had a name. Which in a way, sometimes a breakthrough. Yeah. I mean, this happened to me with something completely different when a whole set of conditions and suddenly I had a name for it. Oh, that's what it was. Yeah. 12 years went past my eyes. The time it takes for some people to get a diagnosis is years. Yes. I'm sort of thinking it's almost the name is more important than the diagnosis. It isn't, but it kind of feels like it. I think they go together, hopefully. Yeah.

Now, let's talk about cerebral palsy. Your respondent, Minet, she talks about people assume she has no thoughts. They think she's thoughtless. And she's got more thoughts than most people put together. But she has to constrain sometimes her thoughts by the ability to speak them because she finds speech so difficult. Yeah.

So she's sometimes constraining her thoughts because she can't say them. How do you do that? How do you do that indeed? Because normally our thoughts are not limited by language at all. And also they run away, don't they? They do run away, yeah. And they create and they're wrapped around by language and they come out of speech. The timing, she's much slower in speech than she's in thought.

I mean, the prejudice is if you haven't got language performance, you don't have intelligence. That's the prejudice, isn't it? In a busy world in which time is of the essence and we don't give people time to express themselves, that can be the case. Yeah. I think Martin, he talks about this in terms of loneliness. Earlier I was talking about solitary confinement. He's got a strong sense of his loneliness if he can't say what he thinks.

He's cut off from the rest of the world and the rest of the world is cut off from him. I mean, Martin, again, with cerebral palsy, you have to be in the moment in a conversation. That's what conversation is, to and fro. And he says he's always at one remove.

because he's having to think about what he might say, as well as listening to someone else. And then the time has gone, the timing's gone. One guy who has really bad problems with communication, his family are very good, but it may take him 10 minutes to say a joke. So they listen for 10 minutes and then they laugh. Life is slower then, isn't it? Life is slower. You've got to live with people who are prepared to accept that's the way it is with...

Jim, Jackal. Yeah, exactly. We have to say, well, okay, it's slow. So it's slow. We'll listen better. We'll listen slower. One bit of social behaviour that keeps cropping up in the book, many of the people talk about this, is that when they're trying to say something, other people who don't have that condition jump in.

They quite often use that phrase, and you've used it. And I get the impression it really irritates these people. Now, what's going through somebody like me, or perhaps you even, why do we jump in? Why do we do that? And how do we stop doing it? Yeah, people don't like it on the whole. There's a flow, there's a velocity, there's a speed, there's a... that speech proceeds at. And when we see that it's stopped because people find it difficult...

That's disrupting it. That's one thing. But they also find someone who they think is in distress because they can't say what they want to say. And they think they know what they want to say. So maybe they think they may be helping, but really they're not. Usually they're not. And people, just like someone with a stammer, would really like you to just listen to them rather than butt in or jump in. So people with cerebral palsy are the same.

So we just need to slow down and respect people a bit more and listen to them, I think. Yes, really, it is respecting who they are. I mean, right at the very beginning when I was talking about Benjamin and I said, well, that's not Benjamin. It was a really silly thing to say. And in a way, it's the same thing with this jumping in, isn't it? If you jump in, you're saying, you're implying, I don't like the way you are, so I'm going to fill in for you. The way you are, yeah, isn't right.

Yes. I don't discuss stammering in the book because there's a great book about it, but stammering is who they are. And they make the point they prefer to stammer and have expression in stammer than have someone butt in or try and stop the stammer. Right. Now, as you may know, I've talked to the listeners now, we're working in partnership with the Open University on word of mouth, and they produced a quiz for you exploring why languages have peculiar clusters of words, such as...

Word of mouth, yes, and why they're essential to how we communicate. So to find out more, visit the Word of Mouth webpage and follow the links to The Open University.

So back with you, Jonathan, sir. Let's talk for a moment about technology. The utopian instinct in me, I want to think that technology can unlock. a lot of people. I want to be optimistic. I want to think that it can do that. There's a woman in my area and I see her come past and she's got a mobility vehicle and she presses buttons. on a kind of tray in front of her and then it says how are you

It says to me, and then it says, will you come round to my house? I mean, she presses, but I don't know how it works. I've no idea. But I feel as if it's unlocked this woman who otherwise would have no means of communicating with me. Yeah, well, it sounds like it has. What else is available? Well, you remember Stephen Hawking, and he had the ability by moving his eyes to create words which could then be spoken in that American voice.

And anything where you can use a bit of the body to create a movement that can then be translated into speech is relatively easy. If you like, the Holy Grail is to try and pick up brainwaves. But you can then translate into speech. And this is beginning to be done. Wow. But at the moment, just for technical reasons, I think you probably need to put electrodes on the surface of the brain so you have to have an operation.

But then you can train the machine and you can train the person so that they can somehow produce things that are called speech.

Now, you give some time in the book to Sir John Hale, whose condition was written about by his wife, the biographer, Sheila Hale. And in short, what happened here, I hope I get this right, was that a stroke left him with two or three... nonsense sounds, in one or two words, while he preserved the intonation and music of his speech as if he was speaking phrases, sentences, whole speeches.

I think he thought that he was as well, wasn't he? Yeah, I wish I'd met him. He died before I met Sheila. He had an extraordinary condition after a stroke, an aphasia, a lack of language after it. Usually there... They're fluent when they may speak in a word salad, but they're not aware that what they're saying doesn't make any sense.

Or they're non-fluent, where you've got very few words and they stutter and they have a lot of effort to produce speech, which is enormously frustrating. Some people can understand others and some can't. And John, he had... Perfect understanding of others, as far as Sheila could show. And he went to all these labs to test his intelligence, and he was all there. He was an academic.

And he could control a room. He spent his whole life controlling a room and lecturing and smooching because he was a trustee of the British this, that and the other. And then after the stroke, he had a fluent aphasia. As you say, he could speak long periods of spoken text, but he always had de wua. That's all he said.

Nonsense. But he had all the intonation, all the prosody, all the different sounds, all the different volumes of language and he did gesture and everyone was absolutely intrigued by him. So he would say what sounded like a sentence. And he thought he was saying something. Yeah, they're thought to lack self-monitoring, so they don't know that what they're saying is nonsense, but they know that other people are talking sensibly. So the only people they don't understand are themselves.

And the tragedy, he, talking about social self, his identity, his social self, was entirely wrapped up in the way in which he expressed himself in language and speech, even though there was no meaning in those words. And Sheila took him off to a speech and language therapist who taught him one or two words that had meaning. But then he became non-fluent, stuttering, awkward.

And he hated it. So he said, no more, basically. And he was much better in the fluent rhythms of nothingness, as she says, as Shuler says, eloquent rhythms of nothingness. The tragedy was she preferred it like that. She couldn't make him... She couldn't bring herself to try and make him understand he was doing meaningless words because the way in which he used that meaningless words...

allowed his identity to be present. It's very difficult to think this through, isn't it? Well, in a way, you have everything wrapped round words. Yeah. The prosody, the way you say them, the pitch, the volume, the gesture and the interest you have in others and the facial expression. And he was intact in that moment. Yeah.

And she just couldn't bring herself to try and make him produce meaningful words. And then parallel to this was James. James had a stroke. But he lost the ability to imagine and feel. So he could speak. I mean, the sentences he's talking in, in your book, they all make perfect sense. But the big chunk that's missing is that he had no feeling. James has the most extraordinary condition called ebulia, which is following a very selective stroke, he's lost emotional experience and feeling.

But language is entirely correct and speech is entirely correct. And he holds down a job. He can talk to the plumber about the drains and put in a computer program and he can talk. to people on the phone about job type things. I said, what's the real problem? And he looked at me and said, chat, I have no small talk. And without that small talk, his relationships are...

really difficult. I mean, his relationship with his wife, she says, is really difficult and he accepts that because he has nothing to say to her. I said, well, just talk about anything. He said, I've got nothing in mind. And that just shows, you know, we talk about conversation, we talk about speech, but social aspects of speech, you know, chatting, are so important. And he couldn't empathise with others, could he? He's beginning to a little, but not really.

I mean, you have Sir John Hale, who everything, emotional empathy, is there in his nonsense speech. And James, who has meaningful speech, but he's not present in it. His social self isn't in the speech any more or less. And you also said that he doesn't have a feeling about the fact that he hasn't got feeling. He probably has diminished. Yeah, he's less concerned about the problem than you might expect. But he is saddened by it. but also can't do anything about it.

Well, Jonathan, Jonathan Cole, I can say thanks to your book. I realise perhaps more than ever how lucky I am to be able to say to you, because I've got speech, I'm going to say thank you. Thank you very much indeed. Thank you, my pleasure. Thank you.