Hello and welcome back to Sounding It Out, a podcast dedicated to audiology and hearing health, brought to you by Signia UK and Ireland. I'm Julia van Huyssteen your host, and I'm delighted to be back with two new episodes. And believe me, it was worth the wait. I am the Head of Audiology at Signia UK and Ireland, and hearing health is a super passion of mine. If you know me, you'll definitely know these podcasts are Signia (inaudible) so that everybody with an interest in hearing health or audiology can benefit and enjoy them. So please do. For this next series, we are going through some thought- provoking explorations around individual experiences of hearing. My guest speaker for this series is Professor Andrew Hugill, who is the Deputy Director at the Institute for Digital Culture at the University of Leicester, where he has also founded the Creative Computing Program. His background is in music in which he's a professor and he's an active composer and musicologist. Throughout his career, he has worked across artistic and scientific disciplines. He believes in the importance of transdisciplinarity. Professor Hugill hopefully won't mind me saying that he has three invisible disabilities. He's autistic, which in his case includes social and sensory issues, but absolutely no learning difficulties. He has severe hearing loss including tinnitus and diplacusis, and we will delve into those topics a little bit more in Episode Two. And he has Ménière's Disease, a balance disorder, which also caused the hearing loss. Professor Hugill works actively in all of these areas to improve lives of others with similar conditions. He also founded the Aural Diversity Network, more on that shortly. Professor Hugill, welcome and thank you for joining me for this podcast series and I just want to touch on those invisible difficulties a little bit later on because they fit in very well with the theme for this series. So welcome.

Hello and welcome back to Sounding It Out, a podcast dedicated to audiology and hearing health, brought to you by Signia UK and Ireland. I'm Julia van Huyssteen your host, and I'm delighted to be back with two new episodes. And believe me, it was worth the wait. I am the Head of Audiology at Signia UK and Ireland, and hearing health is a super passion of mine. If you know me, you'll definitely know these podcasts are Signia (inaudible) so that everybody with an interest in hearing health or audiology can benefit and enjoy them. So please do. For this next series, we are going through some thought- provoking explorations around individual experiences of hearing. My guest speaker for this series is Professor Andrew Hugill, who is the Deputy Director at the Institute for Digital Culture at the University of Leicester, where he has also founded the Creative Computing Program. His background is in music in which he's a professor and he's an active composer and musicologist. Throughout his career, he has worked across artistic and scientific disciplines. He believes in the importance of transdisciplinarity. Professor Hugill hopefully won't mind me saying that he has three invisible disabilities. He's autistic, which in his case includes social and sensory issues, but absolutely no learning difficulties. He has severe hearing loss including tinnitus and diplacusis, and we will delve into those topics a little bit more in Episode Two. And he has Ménière's Disease, a balance disorder, which also caused the hearing loss. Professor Hugill works actively in all of these areas to improve lives of others with similar conditions. He also founded the Aural Diversity Network, more on that shortly. Professor Hugill, welcome and thank you for joining me for this podcast series and I just want to touch on those invisible difficulties a little bit later on because they fit in very well with the theme for this series. So welcome.

Thank you very much for that introduction.

Thank you very much for that introduction.

My first question is related to a little bit of that introduction that I gave earlier. Would you care to explain to our listeners what aural diversity is about and what your role is within that aural diversity piece?

My first question is related to a little bit of that introduction that I gave earlier. Would you care to explain to our listeners what aural diversity is about and what your role is within that aural diversity piece?

Well, it's fundamentally a very simple thing, which is an observation that everybody hears differently. And I think this is just factually true. If you think about the way that the human ear is shaped, everybody's ear is unique to themselves, bit like a fingerprint. The outer flaps certainly, and even some aspects of the inner ear. And then of course we're all at different stages in life and we all have hearing that is in a state of transition to some extent. Even things like blockages, if you have wax in your ear or if you have a cold that day, that changes the way you hear. Aural diversity is really just a recognition of this diversity of hearing. Where this becomes perhaps worth more scientific study is when you start to realize how pervasive this is in relation to so- called normal hearing. Normal hearing as everybody listening to this will probably know, is defined by the set of experiments performed on students in the 1950s, '60s, and they were in the age range of 18 to 25. And these were all people who had no disease, no impairment. They were healthy people both ears working in a so- called normal way. And there were experiments done to test their response, producing a set of curves indicating that their response to sounds. And of course what you realize quite quickly when you think about this is that actually this is a very small group of people. The healthy 18 to 25 year olds are about 17% of the population. Everybody else doesn't hear like that. Even within 18 to 25 year olds there's actually quite a lot of variation, temporary variations of the kind I've mentioned, but also in terms of hearing development. And so you start to wonder why we are accepting otological normalcy based on such a small sample group. And this is really what aural diversity concerns itself with. What it's saying is the vast majority of people have a different hearing to so- called normal hearing. And we think that, or we argue that this is not sufficiently acknowledged in the way that the world is constructed, in the way that we think about sound and hearing and listening. And almost any hearing and listening situation is underpinned by a tacit assumption of normal hearing. Audiology as the discipline has this as its primary assumption. The audiogram has its level and there's normal and if you are below that, you've got hearing loss or hearing impairment. And I start to question this. There's all sorts of ways of hearing, and they're not all measurable by these methods. Once we've realized this simple observation, we then start to look at the differences in hearing and how they affect life, how they affect people. Really try to get a sense of the scope of hearing difference and what we can do about it in terms of acoustics, in terms of design, in terms of creativity, art, in terms of audiology and medicine. In fact, a whole range of disciplines that this affects.

Well, it's fundamentally a very simple thing, which is an observation that everybody hears differently. And I think this is just factually true. If you think about the way that the human ear is shaped, everybody's ear is unique to themselves, bit like a fingerprint. The outer flaps certainly, and even some aspects of the inner ear. And then of course we're all at different stages in life and we all have hearing that is in a state of transition to some extent. Even things like blockages, if you have wax in your ear or if you have a cold that day, that changes the way you hear. Aural diversity is really just a recognition of this diversity of hearing. Where this becomes perhaps worth more scientific study is when you start to realize how pervasive this is in relation to so- called normal hearing. Normal hearing as everybody listening to this will probably know, is defined by the set of experiments performed on students in the 1950s, '60s, and they were in the age range of 18 to 25. And these were all people who had no disease, no impairment. They were healthy people both ears working in a so- called normal way. And there were experiments done to test their response, producing a set of curves indicating that their response to sounds. And of course what you realize quite quickly when you think about this is that actually this is a very small group of people. The healthy 18 to 25 year olds are about 17% of the population. Everybody else doesn't hear like that. Even within 18 to 25 year olds there's actually quite a lot of variation, temporary variations of the kind I've mentioned, but also in terms of hearing development. And so you start to wonder why we are accepting otological normalcy based on such a small sample group. And this is really what aural diversity concerns itself with. What it's saying is the vast majority of people have a different hearing to so- called normal hearing. And we think that, or we argue that this is not sufficiently acknowledged in the way that the world is constructed, in the way that we think about sound and hearing and listening. And almost any hearing and listening situation is underpinned by a tacit assumption of normal hearing. Audiology as the discipline has this as its primary assumption. The audiogram has its level and there's normal and if you are below that, you've got hearing loss or hearing impairment. And I start to question this. There's all sorts of ways of hearing, and they're not all measurable by these methods. Once we've realized this simple observation, we then start to look at the differences in hearing and how they affect life, how they affect people. Really try to get a sense of the scope of hearing difference and what we can do about it in terms of acoustics, in terms of design, in terms of creativity, art, in terms of audiology and medicine. In fact, a whole range of disciplines that this affects.

And I've got to hold my hand up, and I'm physically holding my hand up for those that can't visualize me, as an audiologist, guilty as charged. Until I've joined the Aural Diversity group, I was very much one of those audiologists that would simply define the level of the hearing loss in terms of a category and not necessarily think about all of these other influences that can change your hearing experience. And I think your passions shines through through what you've just discussed with us about aural diversity. And in fact, it inspired you to start the Aural Diversity Project in 2018, and that's because of also your own experience of hearing loss and how that project has actually been doing fantastic and growing really quickly because of sponsorships from the likes of Arts Council England, the Arts Humanities Research Council, Leverhulme Trust, et cetera. I would like to explore with you what that project really stands for and what it explores a little bit more.

And I've got to hold my hand up, and I'm physically holding my hand up for those that can't visualize me, as an audiologist, guilty as charged. Until I've joined the Aural Diversity group, I was very much one of those audiologists that would simply define the level of the hearing loss in terms of a category and not necessarily think about all of these other influences that can change your hearing experience. And I think your passions shines through through what you've just discussed with us about aural diversity. And in fact, it inspired you to start the Aural Diversity Project in 2018, and that's because of also your own experience of hearing loss and how that project has actually been doing fantastic and growing really quickly because of sponsorships from the likes of Arts Council England, the Arts Humanities Research Council, Leverhulme Trust, et cetera. I would like to explore with you what that project really stands for and what it explores a little bit more.

Sure. So as you commented earlier, my background's in music. For most of my career in music, I really didn't take any notice of hearing at all, and I think this is true of a lot of musicians. And then in 2009 I was diagnosed with Ménière's Disease, which is, it's a balance disorder, but obviously because it affects the inner ear it also affects your hearing. And I started to realize that my work as a musician was going to be fundamentally changed by this. Of course, there are various ways of reacting to adversity. Mine has traditionally has always been creative. I've tried to make something positive from challenges. So I started to think how can I continue in music? The other thing was I was, at the time, in charge of a large research institute and I became quite concerned that if I went public with my hearing changes and my balance disorder, that this would affect my career in a negative way. I think this is true for a lot of musicians as well. If they have a hearing problem, they tend to keep it quiet. It took me probably about a decade to really open up about this. I remember going to a conference at University of Leeds organized by Professor Alinka Greasley, and there were people who were deaf or who had various hearing differences, talking openly in an academic setting, about their hearing. It just suddenly struck me, why am I being so secretive about this? I then started to talk about it and really that was how the Aural Diversity Network began. John Drever, he'd come up with this word " auraldiversity," all one word, a bit like neurodiversity, and he joined me and we created this network, which initially was we just had a conference and a couple of concerts where we tried to perform music by aurally divergent composers and musicians for aurally divergent audience. The challenge was, okay, how can we create music that could be heard by people like me basically? So it was very embedded in my lived experience, but it was also something that I thought had a wider interest, a wider application. And although I'm not a hearing scientist, I should make that clear, I'm not an audiologist, I've ended up getting involved in these areas and I've addressed quite a few audiology conferences and hearing science conferences and acoustics conferences and you name it. I find myself talking to very different groups of people from the ones I'm used to and they all seem very engaged with this idea. It is gaining tremendous traction. We've just been awarded a very large, millions of pounds to set up a PhD research center for aural diversity. It's really like a snowball going down a hill, this thing.

Sure. So as you commented earlier, my background's in music. For most of my career in music, I really didn't take any notice of hearing at all, and I think this is true of a lot of musicians. And then in 2009 I was diagnosed with Ménière's Disease, which is, it's a balance disorder, but obviously because it affects the inner ear it also affects your hearing. And I started to realize that my work as a musician was going to be fundamentally changed by this. Of course, there are various ways of reacting to adversity. Mine has traditionally has always been creative. I've tried to make something positive from challenges. So I started to think how can I continue in music? The other thing was I was, at the time, in charge of a large research institute and I became quite concerned that if I went public with my hearing changes and my balance disorder, that this would affect my career in a negative way. I think this is true for a lot of musicians as well. If they have a hearing problem, they tend to keep it quiet. It took me probably about a decade to really open up about this. I remember going to a conference at University of Leeds organized by Professor Alinka Greasley, and there were people who were deaf or who had various hearing differences, talking openly in an academic setting, about their hearing. It just suddenly struck me, why am I being so secretive about this? I then started to talk about it and really that was how the Aural Diversity Network began. John Drever, he'd come up with this word " auraldiversity," all one word, a bit like neurodiversity, and he joined me and we created this network, which initially was we just had a conference and a couple of concerts where we tried to perform music by aurally divergent composers and musicians for aurally divergent audience. The challenge was, okay, how can we create music that could be heard by people like me basically? So it was very embedded in my lived experience, but it was also something that I thought had a wider interest, a wider application. And although I'm not a hearing scientist, I should make that clear, I'm not an audiologist, I've ended up getting involved in these areas and I've addressed quite a few audiology conferences and hearing science conferences and acoustics conferences and you name it. I find myself talking to very different groups of people from the ones I'm used to and they all seem very engaged with this idea. It is gaining tremendous traction. We've just been awarded a very large, millions of pounds to set up a PhD research center for aural diversity. It's really like a snowball going down a hill, this thing.

Thank you as well again for sharing your personal experiences. And I think earlier you mentioned that the age range of 18 to 25, which is a very small proportion of the people that we measure hearing to, and you also talked about how atypical the representation is. And I think scarily, if we look at the stats for the future, the most recent report by the World Health Organization predicts that by 2015, 1 in four people will actually have a hearing loss. But that definition of hearing loss should, as you've just discussed, go a lot further than just the audiogram. And I think that is what's reflected in that definition. So actually that one in four becomes a much bigger proportion than just the one in four that we talk about. Now, if we look at aural divergences that you've already mentioned or talked about a little bit or alluded to, that can be the result of lots of different type of hearing differences or difficulties or impairments. But actually it's really scary that when I did a bit of research, it affects roughly 1. 1 billion people. And this is not talking about the audiogram, this is talking about aural divergences. That's a really large proportion of people, and that's why I think we see this snowball effect that you describe, is because suddenly people are starting to realize but you can't just define somebody by a few crosses and circles on a piece of paper. I found on the Aural Diversity website, which by the way is fantastic, anybody that is interested in getting more information, please go and have a look at auraldiversity. org and I'll mention it again at the end, it's brilliant, and I found this wonderful infographic on the website that talks about hearing differences in a very visual way. And I found it really just made sense to me because there's some categories and there's different groups of different categories and different colors that just makes it all just connect together in a way that if you are not following this conversation, will really help you out. But it really gave me food for thought, especially as an audiologist, and you've already mentioned our occupation and ENTs and GPs and everybody that's got a medical background that looks at hearing, it gave me food for thought in terms of how complex our hearing really is and how we traditionally want to simplify it. And even explaining an audiogram to a patient, in my view, is complex in itself. It doesn't make sense. If you've got no experience of hearing and how to measure a hearing loss, it's really difficult to take it in. And I think we have to start to look at people's hearing experiences and trying to translate it into what they tell us during their case history. So we've got to try and make it match up almost. Not to simplify it too much, but also not to make it something that a person can actually take away. And I think, let's talk a little bit about disabilities and disorders and impairments and how we can move away from just that or how that fits into the conversation that we're having now.

Thank you as well again for sharing your personal experiences. And I think earlier you mentioned that the age range of 18 to 25, which is a very small proportion of the people that we measure hearing to, and you also talked about how atypical the representation is. And I think scarily, if we look at the stats for the future, the most recent report by the World Health Organization predicts that by 2015, 1 in four people will actually have a hearing loss. But that definition of hearing loss should, as you've just discussed, go a lot further than just the audiogram. And I think that is what's reflected in that definition. So actually that one in four becomes a much bigger proportion than just the one in four that we talk about. Now, if we look at aural divergences that you've already mentioned or talked about a little bit or alluded to, that can be the result of lots of different type of hearing differences or difficulties or impairments. But actually it's really scary that when I did a bit of research, it affects roughly 1. 1 billion people. And this is not talking about the audiogram, this is talking about aural divergences. That's a really large proportion of people, and that's why I think we see this snowball effect that you describe, is because suddenly people are starting to realize but you can't just define somebody by a few crosses and circles on a piece of paper. I found on the Aural Diversity website, which by the way is fantastic, anybody that is interested in getting more information, please go and have a look at auraldiversity. org and I'll mention it again at the end, it's brilliant, and I found this wonderful infographic on the website that talks about hearing differences in a very visual way. And I found it really just made sense to me because there's some categories and there's different groups of different categories and different colors that just makes it all just connect together in a way that if you are not following this conversation, will really help you out. But it really gave me food for thought, especially as an audiologist, and you've already mentioned our occupation and ENTs and GPs and everybody that's got a medical background that looks at hearing, it gave me food for thought in terms of how complex our hearing really is and how we traditionally want to simplify it. And even explaining an audiogram to a patient, in my view, is complex in itself. It doesn't make sense. If you've got no experience of hearing and how to measure a hearing loss, it's really difficult to take it in. And I think we have to start to look at people's hearing experiences and trying to translate it into what they tell us during their case history. So we've got to try and make it match up almost. Not to simplify it too much, but also not to make it something that a person can actually take away. And I think, let's talk a little bit about disabilities and disorders and impairments and how we can move away from just that or how that fits into the conversation that we're having now.

So the infographic that you've mentioned, it is an attempt to map the scope of aural diversity and as you say, it's done in a visual way that is hopefully quite ... It conveys the complexity I think, but it also is quite easy to follow. Probably we could use that as a sort of template to help us talk through the issues you are raising. On the infographic we have in the top right- hand corner a set of what I've called universal variations. And these are things that affect everybody. For example, ethnic differences, socioeconomic differences, geographical differences. There's been large amounts of studies done on this kind of thing showing that where you live, your socioeconomic background, your ethnicity, affects your hearing. There are variations between groups of people. So I think everything we're going to say has to be seen within the context of these universal variations. We can talk about the numbers, but I've suggested roughly 5/ 6th of the world's population following a typical path through life with regard to hearing, and then about 1/ 6th of the population having the kinds of differences that you've identified that are medically named and could be medically identified. But clearly there's quite a bit of overlap between these two groups. So the numbers are not fixed. But if we consider a typical person who goes through a so- called normal life, and think about their hearing and the way it changes, first of all in the fetus, hearing in the womb is different to infant hearing. And in fact, there's quite a lot of work being done on this at the moment about the extent of difference in fetal listening. And then when you are born, it takes about six months for the hearing system to develop to the point at which you can fully hear things in the way that we would recognize as normal. So there's quite a considerable difference there. And then we get to the teens and young adults group that I've already talked about, and then after that we come onto the group that you mentioned, which is the vast majority of people who are not teens or children, who are going through some kind of age- related hearing change. We can call it presbycusis, we can call it hearing loss. Essentially, it's your hearing changing over time. And gradually, as we all know, you'd start to lose the upper frequencies. Your ability to separate speech in a crowded situation becomes constrained, and eventually probably you'll end up wanting hearing aids to amplify sound and help you with sound. And I've got a lot to say about technology. We'll come onto that. But that is a traditional path. But of course this doesn't happen in a fixed and rigid way and everybody's at some point on that pathway and there's a lot of variation as you go. So even that has a great amount of diversity within it. Then we come onto the other area of the infographic that you've highlighted, which is the medically identifiable differences. And I mean here we've got ones that I think most audiologists would instantly know about and will be part of their training. So sensory neural differences and conductive differences and mixed conductive in sensory neural. So sensory neural being inner ear, and as you said, this could be affected by anything from genetics to drugs to trauma to disease, infection. And then conductive issues, which can range from wax in the ear to growths and some kind of compression of the ear and inner ear physical compression, which changes the way that you hear. That's much less common. That's about 10% of hearing difference. Now, you'll notice that I've used the phrase difference or the word difference throughout this. I haven't referred to loss, I haven't referred to impairment, and generally in the Aural Diversity Network, we try to avoid those words. Why would we try to avoid them? You do lose hearing, there's no doubt about it. There is loss of hearing. So why would we want to avoid that word? I think it's because of our understanding of aural diversity. Because another really important part of this is to say that not all forms of hearing difference involve loss of hearing. In fact, a great number of them are the opposite of that. They're actually an increase in hearing acuity. So if you take a condition like hyperacusis for example, which is an increased sensitivity to sound, this is heightened hearing. It's not hearing loss. But in its way, it is just as medically identifiable and as challenging for the individual as hearing loss can be. I think this is pretty crucial area of aural diversity really is this whole neurological and auditory processing aspect. So how the brain interprets the incoming signal and differences in that. And then of course, uniting all of these, we have tinnitus, which remains a great challenge for research, and I don't think we are there by a long way, in terms of finding a cure for tinnitus, and a lot of people would hope that we would be. But tinnitus is the hearing of unwanted sound. And I know when I go to have my hearing test, I have great difficulty hearing the very quiet signals that you are supposed to acknowledge, because of the tinnitus. I can't sort out what is tinnitus and what is not tinnitus. But of course the audiologist is not measuring tinnitus at all. They're not actually interested in that. So I have to try and somehow ignore the tinnitus and respond to sounds that sound like tinnitus to me, but apparently aren't. So that's quite challenging. I think tinnitus has a big effect on everybody.

So the infographic that you've mentioned, it is an attempt to map the scope of aural diversity and as you say, it's done in a visual way that is hopefully quite ... It conveys the complexity I think, but it also is quite easy to follow. Probably we could use that as a sort of template to help us talk through the issues you are raising. On the infographic we have in the top right- hand corner a set of what I've called universal variations. And these are things that affect everybody. For example, ethnic differences, socioeconomic differences, geographical differences. There's been large amounts of studies done on this kind of thing showing that where you live, your socioeconomic background, your ethnicity, affects your hearing. There are variations between groups of people. So I think everything we're going to say has to be seen within the context of these universal variations. We can talk about the numbers, but I've suggested roughly 5/ 6th of the world's population following a typical path through life with regard to hearing, and then about 1/ 6th of the population having the kinds of differences that you've identified that are medically named and could be medically identified. But clearly there's quite a bit of overlap between these two groups. So the numbers are not fixed. But if we consider a typical person who goes through a so- called normal life, and think about their hearing and the way it changes, first of all in the fetus, hearing in the womb is different to infant hearing. And in fact, there's quite a lot of work being done on this at the moment about the extent of difference in fetal listening. And then when you are born, it takes about six months for the hearing system to develop to the point at which you can fully hear things in the way that we would recognize as normal. So there's quite a considerable difference there. And then we get to the teens and young adults group that I've already talked about, and then after that we come onto the group that you mentioned, which is the vast majority of people who are not teens or children, who are going through some kind of age- related hearing change. We can call it presbycusis, we can call it hearing loss. Essentially, it's your hearing changing over time. And gradually, as we all know, you'd start to lose the upper frequencies. Your ability to separate speech in a crowded situation becomes constrained, and eventually probably you'll end up wanting hearing aids to amplify sound and help you with sound. And I've got a lot to say about technology. We'll come onto that. But that is a traditional path. But of course this doesn't happen in a fixed and rigid way and everybody's at some point on that pathway and there's a lot of variation as you go. So even that has a great amount of diversity within it. Then we come onto the other area of the infographic that you've highlighted, which is the medically identifiable differences. And I mean here we've got ones that I think most audiologists would instantly know about and will be part of their training. So sensory neural differences and conductive differences and mixed conductive in sensory neural. So sensory neural being inner ear, and as you said, this could be affected by anything from genetics to drugs to trauma to disease, infection. And then conductive issues, which can range from wax in the ear to growths and some kind of compression of the ear and inner ear physical compression, which changes the way that you hear. That's much less common. That's about 10% of hearing difference. Now, you'll notice that I've used the phrase difference or the word difference throughout this. I haven't referred to loss, I haven't referred to impairment, and generally in the Aural Diversity Network, we try to avoid those words. Why would we try to avoid them? You do lose hearing, there's no doubt about it. There is loss of hearing. So why would we want to avoid that word? I think it's because of our understanding of aural diversity. Because another really important part of this is to say that not all forms of hearing difference involve loss of hearing. In fact, a great number of them are the opposite of that. They're actually an increase in hearing acuity. So if you take a condition like hyperacusis for example, which is an increased sensitivity to sound, this is heightened hearing. It's not hearing loss. But in its way, it is just as medically identifiable and as challenging for the individual as hearing loss can be. I think this is pretty crucial area of aural diversity really is this whole neurological and auditory processing aspect. So how the brain interprets the incoming signal and differences in that. And then of course, uniting all of these, we have tinnitus, which remains a great challenge for research, and I don't think we are there by a long way, in terms of finding a cure for tinnitus, and a lot of people would hope that we would be. But tinnitus is the hearing of unwanted sound. And I know when I go to have my hearing test, I have great difficulty hearing the very quiet signals that you are supposed to acknowledge, because of the tinnitus. I can't sort out what is tinnitus and what is not tinnitus. But of course the audiologist is not measuring tinnitus at all. They're not actually interested in that. So I have to try and somehow ignore the tinnitus and respond to sounds that sound like tinnitus to me, but apparently aren't. So that's quite challenging. I think tinnitus has a big effect on everybody.

I really appreciate the fact that you try to avoid medicalized words like impairment or deficit and defect. And I think you've already touched on it, but let's talk a little bit about why that is please.

I really appreciate the fact that you try to avoid medicalized words like impairment or deficit and defect. And I think you've already touched on it, but let's talk a little bit about why that is please.

You'll recall that I mentioned John Drever and he invented the word "auraldiversity" all one word, as a kind of parallel to neurodiversity. And neurodiversity, I think, is quite a well- known idea these days.

You'll recall that I mentioned John Drever and he invented the word "auraldiversity" all one word, as a kind of parallel to neurodiversity. And neurodiversity, I think, is quite a well- known idea these days.

Yes.

Yes.

Neurodiversity emerged from the autistic community who were trying to argue against a sort of pathologized view of autism. That far from being a medical disability, it is in fact just a state of being. It's the way you are. The argument is that your brain is wired differently, if you can put it like that, to a neurotypical brain. This idea has really taken hold, I think. Autism, there is quite a profound difference, I think, in the way the brain functions. We still don't really fully understand this, but we can observe some of the consequences of this difference. But the idea of neurodiversity then becomes this way of describing humans in general. Something people often forget, I find, is that neurodiversity applies to everybody. Everybody is neurodiverse. If we didn't have different brains from one another, we would all be robots and we'd all think the same way. So people say, " Oh, somebody is neurodiverse," but actually that's wrong. They are neurodivergent meaning that they diverge from the predominant neurotype. So autism would be a neurodivergence from the majority who are not autistic. So it's an important semantic difference. So when we come to aural diversity, what we have here is that reverse in a way, what we're trying to say is everybody hears differently, whereas all our audiology and medicine tells us that there are specific people who have hearing loss and who have hearing deficits, and they're the focus of attention. And so we're trying to sort of come at it the opposite way, but to the same ends, really, which is to say, well, yes, sometimes this involves hearing loss and I wouldn't want to do anything to diminish the impact of that. You mentioned tinnitus. I personally know a number of people who've taken their own lives because of tinnitus. By using phrases like difference, I'm not seeking to diminish the real consequences of these conditions. But I also think we have to bear in mind the social model of disability, which is that it's not me who's disabled, it's the environment that I'm in that is disabling to me. So speaking as an autistic person, I can say that I heard the world in the way that I heard it, and I became a composer and then a professor of music very successfully using my hearing. And all that time, I had no idea that I was hearing the world differently from other people. And it's only really in the last 10 years or so that it's dawned on me that actually my hearing has always been very unusual. So to give you some examples, I hear things that other people tend not to notice. So I would hear electricity, for example, in the walls. So I would hear the sound of electricity in wires. I'd hear lighting. I'd hear colors, and so I'm quite synesthetic, in other words, certain sounds I hear as colors and certain colors I can taste and so on. So the senses get muddled up. I would listen to fridges and motorways and I would actually notate them. I'd write them down as musical scores because I felt that I could hear detail in them. There's this tendency of autistic people to focus in intensely on certain details, and this meant that when it came to conducting an orchestra, I was very good at picking out details. So if someone played out of tune at the back of the second violins, I would hear them and I would pick them out individually because I could hear that level of detail. So you could say, well, I've got fantastic hearing. This is much more acute hearing than other people. Probably that's true, but then it becomes a form of hyperacusis in the sense that there are other sounds that I find very disturbing and that would be a problem for me, and that has definitely increased as I've got older. We're talking about a medically diagnosed condition that it is reckoned to be a problem. I'm not so sure that it is a problem. It is the way I am. It's only a problem where my environment inflicts itself on me in such a way that I can't function.

Neurodiversity emerged from the autistic community who were trying to argue against a sort of pathologized view of autism. That far from being a medical disability, it is in fact just a state of being. It's the way you are. The argument is that your brain is wired differently, if you can put it like that, to a neurotypical brain. This idea has really taken hold, I think. Autism, there is quite a profound difference, I think, in the way the brain functions. We still don't really fully understand this, but we can observe some of the consequences of this difference. But the idea of neurodiversity then becomes this way of describing humans in general. Something people often forget, I find, is that neurodiversity applies to everybody. Everybody is neurodiverse. If we didn't have different brains from one another, we would all be robots and we'd all think the same way. So people say, " Oh, somebody is neurodiverse," but actually that's wrong. They are neurodivergent meaning that they diverge from the predominant neurotype. So autism would be a neurodivergence from the majority who are not autistic. So it's an important semantic difference. So when we come to aural diversity, what we have here is that reverse in a way, what we're trying to say is everybody hears differently, whereas all our audiology and medicine tells us that there are specific people who have hearing loss and who have hearing deficits, and they're the focus of attention. And so we're trying to sort of come at it the opposite way, but to the same ends, really, which is to say, well, yes, sometimes this involves hearing loss and I wouldn't want to do anything to diminish the impact of that. You mentioned tinnitus. I personally know a number of people who've taken their own lives because of tinnitus. By using phrases like difference, I'm not seeking to diminish the real consequences of these conditions. But I also think we have to bear in mind the social model of disability, which is that it's not me who's disabled, it's the environment that I'm in that is disabling to me. So speaking as an autistic person, I can say that I heard the world in the way that I heard it, and I became a composer and then a professor of music very successfully using my hearing. And all that time, I had no idea that I was hearing the world differently from other people. And it's only really in the last 10 years or so that it's dawned on me that actually my hearing has always been very unusual. So to give you some examples, I hear things that other people tend not to notice. So I would hear electricity, for example, in the walls. So I would hear the sound of electricity in wires. I'd hear lighting. I'd hear colors, and so I'm quite synesthetic, in other words, certain sounds I hear as colors and certain colors I can taste and so on. So the senses get muddled up. I would listen to fridges and motorways and I would actually notate them. I'd write them down as musical scores because I felt that I could hear detail in them. There's this tendency of autistic people to focus in intensely on certain details, and this meant that when it came to conducting an orchestra, I was very good at picking out details. So if someone played out of tune at the back of the second violins, I would hear them and I would pick them out individually because I could hear that level of detail. So you could say, well, I've got fantastic hearing. This is much more acute hearing than other people. Probably that's true, but then it becomes a form of hyperacusis in the sense that there are other sounds that I find very disturbing and that would be a problem for me, and that has definitely increased as I've got older. We're talking about a medically diagnosed condition that it is reckoned to be a problem. I'm not so sure that it is a problem. It is the way I am. It's only a problem where my environment inflicts itself on me in such a way that I can't function.

And again, as an audiologist, for me, it's really good for me to absorb that that is something that autistic people potentially could be exposed to. We are not saying everybody's the same, of course that's not the point, but it's something that we don't think about as audiologists. You simply do your hearing test and you program the hearing aid and you don't think about how you experience potentially the world around you in a different way.

And again, as an audiologist, for me, it's really good for me to absorb that that is something that autistic people potentially could be exposed to. We are not saying everybody's the same, of course that's not the point, but it's something that we don't think about as audiologists. You simply do your hearing test and you program the hearing aid and you don't think about how you experience potentially the world around you in a different way.

I think that's right. An audiology test often will not detect any hearing impairment or difference or loss or whatever. The hearing will be completely normal, and yet the person they're talking to is radically affected by the way they hear, in a way that can be quite debilitating. Hand dryers in toilets, we've all seen children putting their hands over their ears in toilets because of the hand dryer sound, right? That's because infant hearing hasn't developed to the robust state that you get if you are a young adult. But for autistic people, that's a permanent state and the sound of hand dryers in toilets, I mean, I still run away if I see hand dryers in toilets. And they are there in most toilets these days, so it's hard to avoid them. But they are painful to listen to in a way that I think most people would just find them maybe a bit annoying, but they just accept them. But for a lot of autistic people, not all, but a lot of autistic people, they are intolerable and it makes public toilets inaccessible to us.

I think that's right. An audiology test often will not detect any hearing impairment or difference or loss or whatever. The hearing will be completely normal, and yet the person they're talking to is radically affected by the way they hear, in a way that can be quite debilitating. Hand dryers in toilets, we've all seen children putting their hands over their ears in toilets because of the hand dryer sound, right? That's because infant hearing hasn't developed to the robust state that you get if you are a young adult. But for autistic people, that's a permanent state and the sound of hand dryers in toilets, I mean, I still run away if I see hand dryers in toilets. And they are there in most toilets these days, so it's hard to avoid them. But they are painful to listen to in a way that I think most people would just find them maybe a bit annoying, but they just accept them. But for a lot of autistic people, not all, but a lot of autistic people, they are intolerable and it makes public toilets inaccessible to us.

Yes, I agree with you, absolutely. I mean, they are incredibly loud. They are, they really are. So it's uncomfortable for most people, but of course intolerable for people that have got hyperacusis or different experiences in loud sounds. I think let's talk about technology to round it up a little bit because that's also an important part of hearing differences and what we've got available to assist us. And I think there's lots of technologies now that involves different types of listening or the way that you mentioned earlier, using captions as well to help you assist with your hearing when you were listening to somebody on screen or whether it's a phone or whatever. So we've got things like that. We've got apps that people can use. We've got assistive listening devices. We've even now got big brands, mobile phone brands like Samsung or Apple that embedded hearing assessments within it, and that will give you some noise reduction. Technology has absolutely boomed within the industry to do with hearing. There's even some devices, and you might be able to comment from personal experience here, that also helps to give tinnitus advice and tinnitus therapy and tinnitus relief. I wonder what your thoughts are on this and how it links into all of this aural diversity that we've been talking about.

Yes, I agree with you, absolutely. I mean, they are incredibly loud. They are, they really are. So it's uncomfortable for most people, but of course intolerable for people that have got hyperacusis or different experiences in loud sounds. I think let's talk about technology to round it up a little bit because that's also an important part of hearing differences and what we've got available to assist us. And I think there's lots of technologies now that involves different types of listening or the way that you mentioned earlier, using captions as well to help you assist with your hearing when you were listening to somebody on screen or whether it's a phone or whatever. So we've got things like that. We've got apps that people can use. We've got assistive listening devices. We've even now got big brands, mobile phone brands like Samsung or Apple that embedded hearing assessments within it, and that will give you some noise reduction. Technology has absolutely boomed within the industry to do with hearing. There's even some devices, and you might be able to comment from personal experience here, that also helps to give tinnitus advice and tinnitus therapy and tinnitus relief. I wonder what your thoughts are on this and how it links into all of this aural diversity that we've been talking about.

As you say, there's been an explosion of technology, particularly digital technologies. I think perhaps my way of seeing this, the Aural Diversity way of seeing this, is slightly different to the way an audiologist might think about these technologies. So the traditional idea would be, well, someone's got hearing loss, let's help them to have better hearing by giving them some kind of device that will amplify the sound or in some way enhance the sound to make it easier for them to hear. And the focus, particularly with hearing aids, has been very much on speech, making speech intelligible and communication, and obviously that's a very valuable thing. But I see these technologies rather differently. To me, they are all examples of aural diversity. Because what you have in a hearing aid or a cochlear implant or a hearable device of some kind, is an arranger of the soundscape. This is something, a phrase that Mary (inaudible) who's one of our researchers in the Aural Diversity Network that she uses, " Soundscape arranger." What the device is doing is not ... If you wear spectacles, it can correct your vision, but if you wear hearing aids, it doesn't correct your hearing. What it does is to give you a different way of hearing the world. So it's working with what your hearing mechanism can do, but it is translating that into a different soundscape. So you have a completely engineered digital soundscape that you are now hearing, that interposes itself between you and the natural world, and this is true for cochlear implants, it's true for anything. So now we have an aural diversity. It is just a different way of hearing. Sometimes it might be in some ways better than if you didn't have the device, in other ways it might be worse than if you didn't have the device. Cochlear implants is a famous example of this, where for every video of people weeping with joy when they could suddenly hear for the first time, there are about 10 other people where they switch on the cochlear implant and it's just horrible gobbledygook noise, which their brain can't unscramble, and eventually they end up switching it off and never using it again. And then there's a whole question of deaf identity. If you have a cochlear implant, are you still deaf? And so this becomes a cultural issue as well as a hearing issue, a technological issue. By the way, I'm not at all against cochlear implants. I'm just pointing out the range of diversity here. So all of these things, to me, are part of aural diversity. They're all differences in the way that you hear, and every person who wears a hearing aid is now hearing in a different way by definition. We can look at how that works, but one thing that strikes me is that all of these technologies pretty well without exception, are built on this notion of normal hearing. At the root of it is some kind of ideal hearing, which is this normal line that is represented in the audiogram that is, we understand as being the hearing of a healthy person aged 18 to 25. What's interesting me about technology and the way I think Aural Diversity as a project is influencing this now, is that there people are starting to accept that is not the ideal. That actually what you have to do is to work to the hearing of the person, and that is going to have a lot of variation and be different. You have to work with that, and the idea isn't just simply to correct it in some way and to make it as near normal as you can get, and then job done. It's actually to work with what you have and find ways of listening and ways of hearing that the person finds rewarding and pleasurable or all the good things, enhances their quality of life and wellbeing.

As you say, there's been an explosion of technology, particularly digital technologies. I think perhaps my way of seeing this, the Aural Diversity way of seeing this, is slightly different to the way an audiologist might think about these technologies. So the traditional idea would be, well, someone's got hearing loss, let's help them to have better hearing by giving them some kind of device that will amplify the sound or in some way enhance the sound to make it easier for them to hear. And the focus, particularly with hearing aids, has been very much on speech, making speech intelligible and communication, and obviously that's a very valuable thing. But I see these technologies rather differently. To me, they are all examples of aural diversity. Because what you have in a hearing aid or a cochlear implant or a hearable device of some kind, is an arranger of the soundscape. This is something, a phrase that Mary (inaudible) who's one of our researchers in the Aural Diversity Network that she uses, " Soundscape arranger." What the device is doing is not ... If you wear spectacles, it can correct your vision, but if you wear hearing aids, it doesn't correct your hearing. What it does is to give you a different way of hearing the world. So it's working with what your hearing mechanism can do, but it is translating that into a different soundscape. So you have a completely engineered digital soundscape that you are now hearing, that interposes itself between you and the natural world, and this is true for cochlear implants, it's true for anything. So now we have an aural diversity. It is just a different way of hearing. Sometimes it might be in some ways better than if you didn't have the device, in other ways it might be worse than if you didn't have the device. Cochlear implants is a famous example of this, where for every video of people weeping with joy when they could suddenly hear for the first time, there are about 10 other people where they switch on the cochlear implant and it's just horrible gobbledygook noise, which their brain can't unscramble, and eventually they end up switching it off and never using it again. And then there's a whole question of deaf identity. If you have a cochlear implant, are you still deaf? And so this becomes a cultural issue as well as a hearing issue, a technological issue. By the way, I'm not at all against cochlear implants. I'm just pointing out the range of diversity here. So all of these things, to me, are part of aural diversity. They're all differences in the way that you hear, and every person who wears a hearing aid is now hearing in a different way by definition. We can look at how that works, but one thing that strikes me is that all of these technologies pretty well without exception, are built on this notion of normal hearing. At the root of it is some kind of ideal hearing, which is this normal line that is represented in the audiogram that is, we understand as being the hearing of a healthy person aged 18 to 25. What's interesting me about technology and the way I think Aural Diversity as a project is influencing this now, is that there people are starting to accept that is not the ideal. That actually what you have to do is to work to the hearing of the person, and that is going to have a lot of variation and be different. You have to work with that, and the idea isn't just simply to correct it in some way and to make it as near normal as you can get, and then job done. It's actually to work with what you have and find ways of listening and ways of hearing that the person finds rewarding and pleasurable or all the good things, enhances their quality of life and wellbeing.

I think you actually, you've brought it to a summary, into a close, beautifully by just pulling it all together in that last bit that you talked about. So I think it's time to say super, super, duper thank you to you, Professor Hugill. I've loved our conversations today. We've heard today that individual hearing experiences are complex and can be influenced by so many factors. This topic will be interesting for anybody with an interest in hearing and for those that have or had unique hearing differences. Any industry associated with hearing in any way should really do some introspection on how they can individualize communication, music, and environmental sound experiences. In our next episode, Professor Hugill and I will explore some more specific topics that causes hearing differences. And believe me, there are some very interesting revelations. We talk tinnitus, diplacusis, auditory processing disorder, and more. If you are interested in any further information on Aural Diversity, you can connect with the Aural Diversity Family on the website, auraldiversity. org. If you found any of what you've heard today helpful, please tell your friends, family, and colleagues, so as many people as possible can share the knowledge. And if there is a topic you think we should be covering, drop us an email to the address on the show page. If you are just discovering this series, we've already talked to legendary audiologist, Dr. Gus Mueller about hearing aid fitting standards. And for series two, we had four UK industry experts that talked about audiology led wax removal here in the UK. We also had Dr. Barbara Weinstein talking about the audiologist's role in dementia. You can go back and download those previous episodes for free wherever you get your podcast from. And remember to follow so you don't miss any future episodes. This is a Fresh Air production by Ollie Seymour for Signia UK and Ireland. Until next time, goodbye and thank you.

I think you actually, you've brought it to a summary, into a close, beautifully by just pulling it all together in that last bit that you talked about. So I think it's time to say super, super, duper thank you to you, Professor Hugill. I've loved our conversations today. We've heard today that individual hearing experiences are complex and can be influenced by so many factors. This topic will be interesting for anybody with an interest in hearing and for those that have or had unique hearing differences. Any industry associated with hearing in any way should really do some introspection on how they can individualize communication, music, and environmental sound experiences. In our next episode, Professor Hugill and I will explore some more specific topics that causes hearing differences. And believe me, there are some very interesting revelations. We talk tinnitus, diplacusis, auditory processing disorder, and more. If you are interested in any further information on Aural Diversity, you can connect with the Aural Diversity Family on the website, auraldiversity. org. If you found any of what you've heard today helpful, please tell your friends, family, and colleagues, so as many people as possible can share the knowledge. And if there is a topic you think we should be covering, drop us an email to the address on the show page. If you are just discovering this series, we've already talked to legendary audiologist, Dr. Gus Mueller about hearing aid fitting standards. And for series two, we had four UK industry experts that talked about audiology led wax removal here in the UK. We also had Dr. Barbara Weinstein talking about the audiologist's role in dementia. You can go back and download those previous episodes for free wherever you get your podcast from. And remember to follow so you don't miss any future episodes. This is a Fresh Air production by Ollie Seymour for Signia UK and Ireland. Until next time, goodbye and thank you.