Hearing Loss with Lidia Best, European Federation of Hard of Hearing

Speaker Key:

VO     Voiceover

CB     Chantal Boyle

LB      Lidia Best

00:00:00

VO     

Welcome to The Sunflower Conversations, where we explore the Hidden Disabilities Sunflower and its role in supporting people with hidden disabilities.

CB     

Welcome to The Sunflower Conversations. I am your host, and my name is Chantal. Joining me is Lidia Best, who is the president of the European Federation of Hard of Hearing People. Welcome, Lidia.

LB       

Thank you very much for allowing me to join you today and to have a nice conversation. I'm looking forward to it. And I hope as well that everybody listening and watching will actually benefit and enjoy the conversation we have.

CB      

Perfect. So, hearing loss, being hard of hearing, and being deaf can occur for many different reasons. So, in our chat we’ll explore the barriers that can arise, and ways to make sure that communication is effective and, importantly, inclusive. So I'm going to give a visual description of myself first, and then Lidia will do the same. So I'm a woman, I have brown skin, I have got brown, curly hair, I've got bright red lipstick on, I’m wearing glasses, and I have a black top with white stripes on.

00:01:41

I'm wearing a white Proud to Support Sunflower Lanyard to demonstrate that I am an ally, and I am sitting in front of white shutters, and there’s a green plant hanging over my shoulder. So, Lidia, if you could do the same.

LB       

Yes, absolutely. I am a blond woman, white. I believe I am middle aged. I think that's the appropriate way to call myself. My hair is short. I'm wearing a green shirt and also a lanyard from Sunflower that users use, the green one with lovely sunflowers all around. And then behind me is a background which reads EFHOH, which is short for European Federation of Hard of Hearing people, in the blue colour. Thank you.

CB      

Thank you. So, let's begin. Can you tell me, is there a difference between hearing loss, hard of hearing, and deafness? And if there is, what is it?

LB       

On one hand, you could say there isn't, because the communication is true for everybody, it doesn't matter if you're having hearing loss or if you are hard of hearing or being deaf. Everybody’s different. Usually, it's depending on how you function.

00:03:10

So, someone who has hearing loss, when they say, I have a hearing loss, I do personally have a hearing loss because I've lost something, unlike for someone who is in the deaf community, for example, and they will say, I haven't lost anything, I was born that way and I am perfectly happy. And that is also a valid opinion. Both opinions are valid. 

And I always come from the belief and also the stance that no one should be denying somebody’s experience. So we cannot deny that somebody can be happy and is happy, and we know they are happy being a person who is deaf and using sign language. They are perfectly capable. And in the same way, a person who experienced hearing loss, they’re also capable of lots of things, but they do experience barriers because they've lost something. 

And sometimes I think it's actually even harder, because you really are coming from a place where you have been hearing very well, you've been doing very well, and suddenly, due to illness, accident, disaster, it could be anything, suddenly you lost your hearing. Maybe partially, maybe fully. And that is a really scary place to be when it happens, when it occurs, because you really don't know where to go, where to ask for support, what to do. It is scary.

CB      

And that's what happened to you, Lidia, you’ve said. You describe yourself as a person with hearing loss. What was your experience?

00:04:47

LB       

Well, my experience was, as a child, as a teenager, I had a viral infection which nobody realised at the time, that actually affected my ear. So, by the time I actually came back to school from summer break, my teachers realised that I'm not really reacting in the way I should be reacting in the classroom. And for my parents, it was more difficult to notice it because I was masking it. I was lipreading. I was an excellent lipreader, so I was masking it a lot. And when children are mucking about, running around, parents don’t have….

CB

I'm sorry to interrupt. So, did it go gradually, or it was a complete…?

LB       

It was gradual, but it wasn't total hearing loss at the time. So, with my wonderful skill of masking everything with lipreading, I still do that, so really it’s quite challenging for some people to realise, and then suddenly quite rapidly losing a bit of hearing. So, it was the teacher who noticed that. She was getting annoyed. She was seeing that I'm not really reacting. 

And she sent me basically to our duty nurse, because in Poland, where I am originally from, we always had the nurse in the school, and she did the simplest possible test. Anybody can do it, any parents can do it if they have some concerns and worries. She just covered my ear with one hand, standing behind me and saying something to see what the reaction will be. And when she's done it with the second one. 

And I still remember, I will never forget, she was shocked. And she said to the teacher, she's actually quite deaf. First, I was sent to a hospital to stop an infection, to stop the progress of hearing loss, and when I was fitted with hearing aids. 

00:06:46

And you know what? As children do, they manage. We are much harder, tougher than our parents sometimes think. But then, when I was quite happily going on for more than 30 years, with no change to my hearing, just kind of stable, just changing hearing aids and things like that, and then, unfortunately, part of what was part of my hearing loss as well, Ménière's disease has kind of flared up. 

I am very, very lucky to have so-called episodic Ménière's, which means it happens once in some time. But there are some people who have it constantly. So, for now, it's quite well managed, but very [overtalking] time. 

CB      

Ménière's comes with terrible vertigo, doesn't it? Really [overtalking]. 

LB       

Yes, it comes with a spin. 

CB      

Spinning. 

LB       

Yes. And what it does, the fluid from the ear organ which is responsible for balance, can spill into the ear where the cochlea is, and that's where the damage can occur.

So, it was during my time in Poland. Previously, I had that as well, but it was managed very quickly, treated as an emergency, and the fluid was quickly drained. However, unfortunately, about 15 years ago it came back with a vengeance and took away all of my hearing over a three-month period of time. 

00:08:19

And it was actually much harder than the first time around when I was a teenager, because this time I was really hoping to hold on to it. And it was just going, and we couldn't stop it. 

And at the same time, being someone who is hard of hearing, who spent many years as a happy young person, being with other hard of hearing people in the hard of hearing community of young people, going on summer camps, being prepared, you would think, for such a thing, I wasn't. I really, really wasn’t. Still in my prime, still working age, and suddenly I cannot hear. I cannot really participate in the parents’ conferences and things like that, because I suddenly cannot hear. 

And that impacted my children. It wasn't just an impact on me. It was the impact on my children as well.

CB

Having something and then it not being there for you anymore.

LB

In one of the conversations I had, because I went through some kind of semi-counselling with a programme coordinator at the Cochlear Implant Clinic in London, who has been wonderful in the discussions we had, she was actually very helpful to help me to understand the feelings and what was going on around me. And she was just saying, well, for your children, somehow you have died.

CB      

Oh, wow.

LB       

Yes, because that communication was severed. Suddenly, they had to write notes to me. They had to try harder so I could lipread them. So, it was a change for everyone. 

00:09:58

But you can imagine, when I had my cochlear implant finally fitted and I came back from the clinic, the first thing my younger son did, he went behind me, just sitting on the sofa or standing on the sofa and calling me. And when I turned around, because I was not really fully understanding, he was just jumping for joy. She's back.

CB      

She's back, Mummy's back. And we’re going to come on to the technology, but just for anybody who doesn't know what a cochlear implant is, could you just describe it?

LB       

With hearing aids, you can have them every five years replaced, changed, depending on your programmes and technology and colours you want, or the make. With cochlear implants, you cannot do that. When you choose your cochlear implant, it is a surgical operation. It's a surgical procedure where just one manufacturer, one you are staying with for life now, is supplying the device, which is going under the skin, electrodes inside the ear, to replace what is lost, the electrical currents which are ongoing inside the ear.

If we hear well, and the sound is going through the cochlea, and then sending electrical currents to the brain to process the sounds, what it hears from us, from the world. Inside the ear there are hairs. Those hairs are damaged when you lose completely your hearing. So, because those hairs don't exist, they cannot carry that current to the brain. 

00:11:44

The cochlear electrode itself, which is being wound inside the ear, is doing that job. Not in the same way it was possible and designed by nature, but it's pretty close to it for many, many people.

CB      

That is a mind-blowing piece of technology. Did it take you a long time to get used to the sound that you were hearing, because obviously, when you were younger, you have memories of sound. So, I've spoken to another gentleman on the podcast who was born with a hearing loss. I don't think he was completely deaf, but he had hearing aids from a small child, and then as an adult he got a cochlear implant. 

And I don't know whether it took him longer to adjust to the sound. I know that he talks about he really likes Star Wars movies, loves them. And his wife, as a gift, bought him the box set with the cinematic sound. And he said he just sat there and was totally immersed in this sound that for a hearing person would be like, oh, this is pretty cool. But for him, it was ten thousandfold. What was your experience like?

LB       

Well, my experience is twofold. One is the music. Another one is the language. As I mentioned earlier, I’m Polish born, so I learned English using hearing aids. The hearing aids do not go as high with the high frequencies as, for example, cochlear implants do. Cochlear implants are much more on the high frequency. When people are sometimes saying they are missing the bass, the lower frequencies, which is correct, it’s true. 

00:13:46

So I actually was pretty fast. I know I was pretty fast with learning, because I think it was a week after I had the switch-on when I actually had a conversation with my mum on the phone, pretty okay. It was an effort, but it wasn't too bad. And on the first day I was switched on, I actually rang my mum and, well, I only understood hello, how are you, the rest was just a blur.

The fact that I was able to hold the phone in my hand and actually hear the phone ringing on the other side was that kind of experience this gentleman explained to you. For me, that was already, wow, I can finally hear the phone ringing. So, that was one. 

And then in the Polish language, I have to say it kicked in very quickly to be able to understand, because that's my native language. So it's part of my DNA. But when it came to the English language, ah, there was a lot of difficulty, and it took a lot of rehabilitation, listening to sometimes podcasts, sometimes using the books, which are reading books, with recordings to make sure that I can listen to the recording and read the book, and then finally take away the book and just listen to the recording. 

It is a huge, huge, massive change for a person. You don't really know. You think you are prepared, but you are never prepared for a cochlear implant. That's what it is.

CB     

Even just the operation itself, you're going into your skull and to your brain, presumably, approaching your brain. It's mind blowing.

00:15:41

LB       

Because they’re going through a small hole in the skull, but in general, the implant itself is just attached to the skull rather than inside or whatever. But, yes, it is scary. I wanted to run away, basically. But the desire to hear again, to try. If it doesn't work, it doesn't work, I will have to think of something else. But the desire to hear and to just have that connection with the children was still higher, much bigger, much stronger.

CB     

Do you have to be completely deaf in one ear, or it has to be in both ears in order to have it?

LB       

It's now changed. But still, a majority of cases, the requirement, the qualification is both ears, and 90 decibels, 80 decibels of hearing loss. Well, in my case, there was nothing left, basically. But for my husband, there was something. He had about 80 decibels, so he needed to go through a more stringent qualification. There is single-sided deafness, and there is becoming more awareness now among the medical community as well, as well as the politicians, to understand that single-sided deafness can be debilitating as well. 

And it's important that people are supported, because I, as a young child, well, 12 years old, had adopted and then stopped wearing two hearing aids because of the way the ears were so wildly different. One was going really quite deaf, another one was still functioning well.

00:17:25

But I actually relied on only one, which was giving me more crisp sound and better understanding of what was happening to me. So, in a way, I can still imagine, even I'm not so sure how I would adapt myself to have suddenly two ears after so many years of only relying on one.

CB     

You are listening to the Sunflower Conversations with Chantal. To learn more about the Sunflower, visit our website. Details are in the show notes. If we can just talk a little bit the emotion. I feel that this has been a really emotional journey for you. What was that like as a mum? How did you feel when your kids were…? Did they stop talking to you, in a sense, because it was so much effort?

LB       

They did. They tried. There were too many arguments, because sometimes I would misunderstand something. And it is a lot of effort, and I get it. I fully understand it. And at the same time, I felt like I was inadequate because in our family, in our marriage, I was the one hearing, in a way, because I was hearing better than my husband. 

I was making 100% use of the hearing aids I had. And even my husband's family for many years were unsure what I am really a deaf person because for them, looking at my husband, comparing, there was a big difference. That’s why I am always saying it's a huge spectrum, and it depends on the person as well. Everybody is different.

CB     

What do you in your personal experience and through the work that you do at EFHOH and your other organisations, what are the common misconceptions about people who cannot hear?

LB       

Most of the time, misconception is, number one, that if we are speaking very well, that one must be hearing. And that comes from the misconception, when people majorly people who are deaf, who are born deaf, whose speech is not clear and who use sign language, then that is the misconception. That is a preconception in everyone's mind that this is what deafness is, or hearing loss is. 

So, if I present myself and I don't wear my cochlear implant and I say, I am completely deaf and I need you to help me, or to just give me a nudge because somebody is calling me or anything like that, please be aware of it. And yet, I will not get the correct reaction. The person will be thinking I am just winding them up or whatever, because I speak too well. Or, by some pure coincidence, I have reacted to something, what looks like they were calling me, and I reacted to them, when it could be something else getting my eye gaze on them. 

I did experience abuse regarding that myself. And it was actually that situation which spurred me, in a way, when I said to myself, if that cochlear implant will work for me, then that confidence I needed, because my confidence was right down to the bottom, I hope I can regain my confidence, and then I will come back fighting. And that’s what I am doing now for many years, to come back fighting and saying, come on.

00:23:16

CB      

So you were being verbally abused because somebody perceived that you were lying that you weren't able to hear?

LB      

Yes. 

CB     

Oh, dear. And what are the other misconceptions? We spoke before, and I think you mentioned about that people can sometimes think that you're not intelligent if your hearing is…

LB

Yes, that's one of the most common ones. It's not even that. I actually was just recently visiting Poland, and a colleague of mine, who I met only online before, was giving me an experience of working at the Association for Deaf People, where there were two colleagues working with him.

This person was hearing, and he was just minding his own business, getting on with his work in the office. And when he observed listening in to a discussion between two hard of hearing colleagues, one was hard of hearing, another one was deaf-blind [?] on top of that. And one was asking about what time the customer is supposed to come to have a meeting so we can support them. And the other one thought the question was about the family arriving

So, basically, they continued to talk to each other, misunderstanding the responses and questions, until my colleague said, you know what, guys, you are both talking about completely two different things, and you still don't know why. 

00:24:50

I even now, with my cochlear implant, I still find myself sometimes responding wrongly to some kind of callout or something my colleague at work is saying. And we just have a laugh together when we realise it. But that is a great, accommodating environment. 

But unfortunately, when I was in school, it did happen to me as well, when a teacher was just basically saying that he's not going to be repeating himself all the time, because I cannot be that stupid, for example, or whatever. I was old enough, and my colleagues were old enough to stand behind me and to stand up for me. Excuse me, you forgot that she's got hearing loss, so you’d better accommodate her.

CB      

But not everybody has that, do they?

LB       

No, no. And I know that. And my heart always goes out to people who tell me. And I do understand how that feels when you just sometimes are not sure even to say something to intervene because of how you will be misjudged, how you will be seen. And, yes, you will be seen as you might be stupid, because you are answering completely out of the blue, a completely different way.

CB      

As somebody who's been on the journey that you've been, and obviously all the work that you do, how important do you rate communication?

00:26:13

LB       

Oh, number one. And also, I came across many people in my community who, for example, I remember my colleague who was on the board from the Netherlands, he was saying, because he was born with hearing loss, like my husband, he had the same experience as my husband, where in his own country he would be asked, where are you from, because the pronunciation is different since they were children. 

So the way they pronounce in language, native language, is different. The way I pronounce in my language is of a perfectly hearing person because I spent 12 years without hearing loss, my first formative years, and that made a huge difference. So I don't get anybody asking me, where are you from? No Polish person will ask me that. But they would ask someone who was born with hearing loss, and then they would get that question.

CB      

Yes. And the impact. I guess it's about your identity, isn't it? And if you're being misidentified, that must have an effect on your 

confidence.

LB       It does. It's huge. And that's why I rate communication number one, because communication is everything, from communication with teachers when you are a parent, to have the confidence also to support your children. But also, I do remember in school the teachers were, for example, asking that myself and my husband should be working more with our children on pronunciation, when you get those lessons, phonics and things like that. 

00:28:04

And I was kind of puzzled, because I said to the teacher, how can I test my child or check up my child when I'm Polish? English is my second language. It's more difficult for me to do that. And then for my husband even more, because he was born with hearing loss. So he doesn't always hear it. And that was one thing. 

But also doctor's appointments. It’s so important that the communication is very clear so we understand each other and the diagnosis is made correctly. The misdiagnosis can happen if we misunderstand the questions, if they're not clearly spoken to us or presented. 

But then to understand what is happening to us and what the instructions are, everything has to be in writing, everything, because otherwise situations can happen, as happened to my husband, when he misunderstood how long he should be taking his tablets for. That was a blood clot. Well, that was the price to pay after travelling to Japan, and he developed a blood clot and he didn't realise he actually stopped his tablets too early, and he collapsed. 

We managed to sort it out. But the problem was, the communication was lost when he was at his appointment.

CB      

That can have devastating consequences, can’t it?

LB       

We were lucky.

CB      

Yes. And then there are other instances you think about, like in emergencies.

00:29:40

LB       

If I suddenly don't have my cochlear implant processor because it flew off in an accident, nobody will know that I actually have it there. So I do know that I should be wearing maybe a bracelet or something to indicate that I wear a cochlear implant, because if I am unconscious and the emergency services, for example, the doctors want me in A&E to go into an MRI scan, then it's not something I should be having.

CB     

Yes, of course, because that that would be really, really dangerous. And I'm thinking in terms of general things. If there's a fire, if there is any other kind of emergency where people are asked to evacuate, if it's coming over a Tannoy and you can't hear that or you're not interpreting the communication in the correct way. 

LB

Yes. And at home, we can be responsible for that and we can make sure that our home is safe for us because, thanks to the sensory services in the UK, we receive all the support from the social services to ensure that our homes can be secured, and the fire service as well is coming to our homes to make sure that we can have the alarms which are connected to our visual alerts, so that way we can be woken up when the danger is happening. 

But that is not something that is happening when we're travelling. And I did have a situation last year in Brussels, actually, in the hotel, which was a five-star hotel, which housed on that day at least, by my count, five cochlear implant users. No, maybe more, because of that was including me and my husband. 

00:31:25

So I think six or seven cochlear implant users were staying in the hotel for a conference, and a fire broke out there, and there was no alarm that anybody could follow because they were all taking off their devices just to relax, going to sleep. And an alarm broke out very close to the hotel, which meant evacuation for the hotel was ordered as well. And when we arrived from a very late-night meal, as we always do, we realised what had happened there. 

The hotel had absolutely no means and no systems in place to actually allow even anybody to provide the information. Look, I cannot hear anything at night, so you need to have a procedure for a person like me in case of emergency.

CB      

Yes, it's absolutely crucial. Do you find that the community, the hard of hearing community and the Deaf community, in social situations, social events, is there an impact that you have been aware of that it makes it harder to attend events like that? If everybody there is hearing, is there a divide?

LB       

Oh, the divide is huge, because despite the fact that nearly everyone benefits from live captioning in conferences, because you miss out, somebody says something to you or whatever, and sometimes it's too much listening effort in general. Even for hearing people, sometimes they just go to sleep nearly, right? 

So, having that additional information, sensory input, which is the captioning, the visual one, or for deaf people, sign language as well, it does help a lot to make sure that we are in the know.

00:33:20

Especially in very important meetings, which I usually attend at the United Nations level, I would not have the confidence to interject if it's needed, or even to make a contribution or comment to some important discussions we are having, unless I have full confidence that I understood that question well. And that means, for me, captioning. 

I also use hearing loops or whatever is available in the room, if it is. Usually it is hearing loops. Now are Overcast coming in, which is also providing broadcasts, like streaming Bluetooth broadcasts directly to our devices, which helps. It's like somebody holding a microphone and just speaking and I'm getting the direct speech. 

So, those help to do it. But with deaf people, if they don't have a device or the devices are not as useful to them as, for example, for me in this case, then, yes, it’s even much harder without having sign language interpreters there. There is this barrier. You kind of don't feel you are invited.

CB       And I've seen lots of music concerts with sign language interpreters. And I actually went to an event myself. It was a Pride event. And they had various talks and panel shows, talks, what have you, and they had an interpreter there, which was fabulous. I don't know if that's going to be… Have you seen that that is happening more? Some of the ones I've seen from the music concerts, the interpreters are fantastic. They're so entertaining. They're really into the show, and they're not just interpreting it from a static position. They're performing at the same time.

00:35:30

LB

Yes, I have, and it's great and it's wonderful. But it's not useful for the majority of people who don't know sign language. And recently, I have seen on LinkedIn some few advocates are talking more and more about missing out on what is going on in the concerts, because many times the stars are communicating with us. I was recently rewatching [unclear] with, what's his name, Robbie Williams. 

And I have seen from that recording how much interaction, not just singing, was between Robbie and the audience. I would have missed that out unless there was captioning there. And that was something I definitely missed out. Or a hearing loop, or the direct sound coming to my ear, making sure that I can actually hear directly into my ear, because the distance between the sound and speakers, it's creating a huge barrier for me. 

So, that was quite a few people. One person was talking about the singer actually talking about her health issues, and she missed out the jokes. She missed out because there was no captioning there. But I do think artists do realise that, and that's why we are making those efforts. And I'm very pleased to see on YouTube, for example, more and more videos from the artists already open subtitling, because they are making sure the lyrics are there so we can follow. 

For me, it's actually very hard to try to follow the lyrics. If I miss the beat with something, and them I’m, where is he or she with the lyrics? It's very difficult. So, even having lyrics behind, not captioning, just having lyrics behind in those wonderful video effects they are creating. Just put somewhere nice, great videos with lyrics, and I am following you up, and I can sing with you.

00:37:38

CB     

Yes, it's so simple, isn't it? That's not a difficult adjustment to make. 

Thank you for joining the Sunflower Conversations podcast. Remember to hit subscribe. 

We had a couple of questions come in from a webinar that you were very kind to join and to present at, and some of the questions we didn't get a chance to get to. So I thought it would be quite good to just maybe quickly run through them now. I'm just going to read it, from one of the participants who said that they have hearing loss and that most people think that she hears silence or that she's turned down the volume. But she has actually lost all high-pitched sound, so she only hears some things, and some things I like mumbled sounds. 

And she talks about an ITV drama in the UK called Code of Silence, which is fairly new, which tries to show what the character played by Rose Ayling-Ellis actually hears. So, if anybody's listening and hasn't had an opportunity to watch that, check that out. 

Somebody was asking, how long does the cochlear implant last? Does it have a lifespan, or does it need to be replaced after a certain time? So, if you could just give an answer to that.

LB       

That's the one operation, and I don't need any more. But if someone is a child receiving a cochlear implant, a young child, then for sure they most likely will have another operation throughout their lifetime. 

00:39:18

But I have met people who received implants when they first came out, one of the first, so 40 years, going strong, just changing their processors, the devices which look like hearing aids, except a little bit different. 

And they are working with our implants and, yes, they keep going. So, normally, I think, depending on the manufacturer's warranty, but I think it's around 15 years, which I'm still under warranty. But there are also sometimes situations, after all, it is electronic, that they break down much earlier even. So, it can happen as well.

CB      

Okay. And then just a couple more questions, because we are coming to the end.

LB       

Should I mention that Code of Silence situation?

CB      

Yes, please.

LB       

Oh, yes, I've watched it. I actually enjoyed it very much. And actually, I have been doing a bit of forensic lipreading, but for the Polish language, in the UK. When people have hearing aids, in the majority experiencing hearing loss, most of the time, including in induced hearing loss such as losing some hearing because I've been listening to very loud, wonderful concerts and blasting out the music into my ears when I am going on the underground in London, just to hear only music and not be noise. Well, I actually am enjoying myself. 

00:40:50

And the first thing that happens when somebody is losing their hearing due to unsafe listening is to lose the high frequencies. That's the first that goes normally. So, that's why you get later the mumbling only voices. And hearing aids can help with that, but sometimes people still find that the high-pitched voice still is lost for them. 

On top of that, we have tinnitus, and tinnitus is just a noise all the time going on in our ears or brain, in fact. And it's non-stop, and depending on the intensity of it, it can be really debilitating. Oh, I can’t say it. 

CB      

Debilitating. 

LB       

Yes. Thank you. Well, English is my second language.

CB      

Oh, I think you're phenomenal. This might seem like a silly question, but when you're asleep and you're dreaming, is the tinnitus in your dream?

LB       

No. Lucky.

CB      

No. You get that reprieve. 

LB       

Somehow I manage to get tired, because we get all tired, listening fatigue and concentration fatigue. But usually, when I hit the pillow, I go pretty quick to sleep. And no, I have no dream of tinnitus at all. It doesn't exist there.

00:42:12

CB      

Good. So, what are your thoughts? Because we've spoken a lot about basically the perception of you and others is that it's an invisible disability, isn't it, basically. And so, people are not aware of what your hearing levels are like, whether you can hear anything at all or if you’ve started to decline. So, thinking about tools for that, what do you think about the Sunflower?

LB       

Well, the Sunflower is actually a great tool, and the people I have introduced it to in European countries have also been finding it useful. And I know it started from the United Kingdom. I have many times mentioned in different conferences I participated in that we are using the Sunflower and how it can be useful. 

One of the biggest things it can help with, obviously, people, especially people with hearing loss do experience, I highlighted stigma. We don't want sometimes to even kind of come out and say I do have a hearing loss. We just prefer sometimes to pretend and just fly by the seat of the pants, and maybe everything will be fine. 

But when we get caught, that's where the embarrassment happens. So it takes the confidence and learning, but it's better to be open and to say, look, I have a hearing loss. And when we know what is happening, we understand why my reaction is this way and not the other way, because there is clearly a background to it. 

00:43:58

And in this case, a lot of people have heightened anxiety, misunderstanding, mishearing, and sometimes thinking somebody is really attacking them verbally when they're not. And having that kind of signal helps for the staff to understand, this person has a hidden disability. 

And many times, our issues are kind of similar to neurodivergent groups as well, so with some kind of overlap in our reactions and things like that. Not hearing the phone, not listening to the phone. If somebody is offering me the phone, oh, speak on that, I will just say, no, you speak for me. Why? I have a hearing loss. I prefer if you make that call for emergency, for example, in the airport, for me. 

So, all those different things, it definitely helps. And it helps because, as a frequent traveller across the world, for many years now, since I have a Sunflower, I feel more confident. I feel more easy to approach the staff and say, I need some support, or I need something, or I need to ask a question. They are just much more aware, especially in the places where the Sunflower is active, if I can say it that way. 

And this year in Vienna, my friend actually discovered why she should be wearing her Sunflower too, both of us with hearing loss. We were flying, I can't remember where we were flying together, and since I was the one wearing it, she got invited to the VIP screening instead of the normal, long queue of people going through the screening at the airport.

And she said, right, now I need to start wearing it. So it is, in a way, psychologically an interesting way of helping people to be confident themselves, to actually say, yes, I have a hearing loss. And so what? It's just a condition I'm dealing with. But we become more comfortable to say it openly.

00:46:09

CB      

Yes. So, you use it for when you're flying, do you?

LB       

Mostly for flights, and just going through the very busy hubs. So the biggest help for me normally is actually outside of the UK, because that's where I find it really useful, surprisingly enough. But also, it's just airports are such chaotic places and pretty inaccessible. People are announcing things, changing planes and things like that. So that helps a lot. That helps a lot. 

But I do know some of my colleagues in the United Kingdom as well, in the association I am connected with, which is the National Association of Deafened People, are also using it in different social situations here.

CB      

So, because it's giving that indicator to people, like before you get frustrated, there’s something that you can't see, so take your time with me and judge.

LB       

Yes, yes, exactly.

CB      

So, finally, do you have any tips for communicating with individuals who are hard of hearing?

LB       

Well, I have tips for both. For the people with hearing loss, just open up and say it? Yes, I have been through all of those phases, including pretending that everything is fine and I am hearing, when I am not. Of course I did. I'm not a saint here. And for many years, I even didn't see myself as a person with disability, because I saw mobility issues as the disability, rather than myself.

00:47:54

And I realised that, actually, we all have different barriers, just different things. So, that's number one. Be open, and tell people what works for you. What works for me may not work for another person. So, always, there is a general, usually, tip. But in general, it's for me to tell someone else what works for me, what I need.

And for the people who are interacting with people like me, one of the main things is, find a quiet place to talk. That's number one. And, of course, well lit, because when it is dark, forget it, I cannot lipread you anymore. So, obviously, that I cannot do. 

And captioning and hearing loops. Usually I talk, but to be as fully accessible as possible in social events, conferences, etc, if you make sure that there is captioning, there is sign language, and even better, if you choose a place, the conference place, which has hearing loops already installed or any other assistive listening system is in place, then you are pretty good.

CB     

My Mum, for example, her hearing is really bad. She really can't hear very well at all. She's got hearing aids. She doesn't very often put them in. And sometimes I start shouting, not shouting at her, but I'll say something, she hasn't heard it, so I'll repeat it back, but loud. And she says to me, I don't need you to shout at me. I just need you to enunciate much more clearly when you're talking to me.

00:49:44

LB       

Yes, and that is basically the three R's. Repeat, repeat, rephrase.

CB      

Okay. Repeat, repeat, rephrase. 

LB       

Sometimes when you say the same thing, but in a different way, my brain might actually pick it up easier. And sometimes just write quickly a note. Just write a note and say this, or point at something, so we know when you're pointing at this, like the counter, I just want that popcorn. Oh, yes. Okay, that's fine. So, it's all about visual kinds of support for ourselves, to make sure that we actually just try to help each other in this communication conundrum.

But the biggest one is where, I’ve sometimes seen it a few times in very uncomfortable situations, where somebody is repeating and repeating and repeating and repeating, in the same tone, in the same way. Don't shout, please, because shouting distorts your lips, so we cannot lipread it any more that well. 

But it's just this continued repeat and repeat, and it's becoming hostile almost for the person receiving this constant repeat, repeat, and still not getting what you're saying. So, rephrasing when repeating helps, maximum after two repeats, is something that helps to resolve a situation, because otherwise, it's like microaggression, almost.

CB     

That's really helpful advice. Really helpful advice, because what can then lead on from that is that that individual withdraws. And then, therefore, they are excluded and they're not included. And that's the opposite of what we're trying to achieve here. So, I love that advice. Thank you. And thank you so much for your time, Lidia.

00:51:42

LB       

Thank you so much. And it's been a pleasure to have a discussion. I absolutely enjoyed it. It brought me back to some places or things, times which I definitely want to forget. But I also realise that unless we talk about it, and unless we speak about it openly, we are not going to change the world. So we need to be sharing our experiences to make sure that we leave a better place for everyone.

CB     

Thank you, and thank you for going with me and getting into it and sharing your personal experiences, because I'm sure it's very, very difficult. So I'm incredibly grateful.

LB       

Thank you. It's a pleasure for me as well. And if anything that we have discussed today is of any help to anyone, then we have achieved our goal, making the world a little bit more friendly and inclusive for people with hearing loss.

CB

If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your health care practitioner. If you enjoyed this podcast, please share it. Leave a rating and review to help raise awareness of non-visible disabilities and the Hidden Disability Sunflower. You can also follow and subscribe to the Sunflower Conversations podcast.

VO      

If you'd like to share your Sunflower story or conversation, please email conversations@hiddendisabilitiesstore.com. Find out more about us or listen to this recording again by checking out our Insights page at hiddendisabilitiesstore. com. You can also find us on Facebook, Instagram, Twitter, YouTube and LinkedIn. Please help, have patience, and show kindness to others. And join us again soon. Making the invisible visible with the Hidden Disabilities Sunflower.

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