Samantha Baines

In this episode of The Undressing Disability podcast, hosts Jennie and  Zoe chat to actress and author Samantha Baines.

She chats about her hearing loss diagnosis, her career, dating, and her book Living with Hearing Loss and Deafness.

Transcript

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JENNIE: Oh, hello, Sam. Thank you so much for joining us. I know you're not feeling 100%, so it's even more appreciated than usual. 

SAM: Thank you for having me. I knew I couldn't miss it, so I was like, even though I feel sick, I'm going to get some decaf Coke and it'll spark me up with excitement. No caffeine.. 

JENNIE: I've never heard anyone say decaf Coke is their medicine. But you know what? I'm going to take your word for it that it's just decaf Coke and there's nothing else in there, but it is just decaf. 

SAM: I can't have too much caffeine because, I don't know, I think I'm such a, like, woooo person anyway, if I have a lot of caffeine, like coffee, I go wild.

ZOE: Oh, my God, I feel your pain. I'm like, it's adrenaline. I'm, like, have a heart attack if I drink coffee. Yeah, take away the Coke, whatever kind.

JENNIE: This is a whole podcast in itself about caffeine and the effects of, like, I feel like old people drinking coffee. But let's kind of get into the nitty gritty because, Sam, I don't know, you're quite a hard person to introduce, really, because you've done everything. You've done comedy and presenting and an exceptionally popular podcast and smashing it on all those fronts.

And now you've written a book. Can you just tell us about the book? We'll start there and go backwards I reckon.

SAM: You missed actor and dog mum and lactose intolerant. From my list of things

JENNIE: I did say, there was a really big list. I'll go back and rerecord that bit.

SAM: Yeah, so I wrote a book. So I've written two children's books before that both have deaf protagonists. Harriet Versus the Galaxy and the Night the Moon went out. But this is my first nonfiction offering to the world and is meant to be read by adults rather than children, Living with Hearing Loss and Deafness. And the sort of tagline of the book that's on the cover is a guide to owning it and loving it.

Because for me, that was the really important part of my journey. And I keep saying journey in interviews and it feels very like Davina McCall Big Brother, but it actually has been a journey of going to an audiologist thinking... 

I mean, I went to my GP because I had well, I had two types of tinnitus, but I went because I got the second type, which was brought on by loud noises.

And she sent me for a hearing test. And at the time, looking back, obviously there were lots of signs, but at the time, I did not think I had any sort of hearing loss or deafness. So when she sent me for this hearing test, I genuinely just thought, they must get some sort of bonus for sending you. And obviously I wanted my GP to get her bonus. She's lovely. 

So I went for hearing test and I always say to people in a hearing test, you can't hear what you can't hear, which sounds straightforward, but in an eye test, you can see that you can't read the bottom line. So I genuinely thought, I'm very competitive as well.

I thought I'd aced this hearing test. Like, I was going to walk out, they were going to etch my name on some sort of board for getting the top score. So when they said they showed me my graphs of hearing loss and said, we think you'd benefit from using a hearing aid, it was a proper jaw on the floor moment.

ZOE: I've never thought of it like that. That you don't know what you can't see or hear in your case? Yes, that's really interesting. So I guess that's more of a shock, really, of recognising that you've suddenly become disabled, potentially, if it's that bad when you weren't aware of that.

SAM: Yeah, because I've been for eye tests before and you might be looking at something in a distance and see that it's a bit blurry and that that's your kind of signal to go and get an eye test. But with a hearing test, a lot of the time it's kind of based on comparing yourself to what other people are hearing.

So I do remember the first time I didn't hear something. I noticed that I didn't hear something and this was before my hearing test, but I sort of ignored it and was like, oh, that's just a fluke. But I was backstage at a comedy gig and all the audience were kind of filing in and they were only separated from us by a velvet curtain, so it wasn't a wall or anything.

So all the sound was still coming through and we were in the green room and all the comedians were talking and there was background music on, and the person running the gig came over to speak to me so I could see her and lip read. But I thought she was just speaking incredibly quietly because I didn't pick up. I couldn't hear any single word that she said in this whole, like, two sentences. And I just thought, well, she's not talking loud enough, but the comedian standing next to me heard exactly what she said and replied.

And I remember looking at him, like, astonished, like, how is he? What? And I was shocked, but at the time I just thought, oh, maybe it's because I was standing slightly closer to the speaker, or there's so many excuses for things. You can't hear the TV. Is it because the actors are mumbling?

Is it because it's not turned up loud enough? You can't hear that person on the phone, or maybe it's because you don't really I always thought I didn't like speaking to people on the phone. That was just like one of my quirks. But now I'm like, oh, it's because I really struggle to understand what they're saying and I'm like straining to hear the whole time and especially if I haven't spoken to that person before.

I don't know what their voice is like or what their accent is like, so looking back, there were so many signs, but it's very hard.

You can't see that you're deaf before someone shows you a graph of your hearing loss, as they call it in the audiologist. 

JENNIE: I don't know. I mean, I've got a real love hate relationship with hearing tests because I've had enough hearing tests over my life now that I could see almost when I wasn't hearing, because I could see the lady behind or the man behind with the buttons and pressing things and kind of sitting behind.

And I remember as a child thinking, I haven't heard that, because you learn how to kind of you learn the way it goes after a while, thinking, I haven't heard that. I haven't heard that.

I always say that hearing tests aren't almost worth that much, really, because it's a completely false environment. You're in a soundproof booth, you've got these headphones, you're only concentrating on one thing, nothing else to distract you. You're not even having to listen to full on conversation. You're just listening to sounds. And if that comes out that you've got a hearing loss, just kind of triple it almost when you go into real life and all those things that you just said about somebody speaking and the different tone and all the rest of it.

But I think it's really interesting the words that people use. My daughter had a hearing test last week and the audiologist said that she had a moderate to severe hearing loss. So we've just learned this last week, and it's probably my hearing loss that she's got. But my five year old came out saying, mummy, did I not do good hearing?

Because she said to Aila, who's her younger sister, good hearing, good hearing. But she didn't say that to me. And it infuriates me, this kind of normal and good hearing and getting a sticker for good hearing and good seeing, but we're not doing that. We're kind of reinforcing that. 

How did you feel like, once you were told you've got some kind of hearing loss in the initial shock? Was it quite a kind of medical model thing on you? Like, right, okay, we need to give you hearing AIDS to kind of try and make you come hearing, or was it you trying to trying to do that?

SAM: It's interesting you talk about hearing tests because there are also lots of different ways and, like, setups. So I was put in a booth when I had my hearing test, which I think was great because I couldn't see the audiologist typing and starting all of those sounds, so there's no way that you can tell when they've played a sound.

But then, yeah, I'm very competitive, and it's almost like I try to beat the hearing test sometimes now, even though I'm, like, happy to be deaf. And anytime I go back, if I see them, because they type away and they trigger the noises that you're meant to click the button to. Just in case anyone hasn't had a hearing test. You can see out of the corner of your eye if they're typing and you're like, One's coming up, maybe I'll just click it. So I get it's. Almost like I want to get the points, even though it's too much like a game.

But, yeah, it's a very different environment to real life. Also, it's so tiring having a hearing test, and I don't think anyone tells you that because you're literally, it's like taking the thing that you can't do and being like, just do this now for this intense period of time and I'll test you on it.

And afterwards I'm always like, oh, my God, I need a decaf Coke and a chocolate bar.

But, yeah, so it started off as a very medical model of you go in, had my hearing test, they show me my hearing graphs. They said I had mild to moderate hearing loss in both ears, but it was more on the moderate on one side. So they'd recommend I use at least one hearing aid and that I could book in to come back and have a hearing aid fitting.

And then they gave me some leaflets with pictures of people with grey hair on the front getting hearing AIDS fitted. And obviously that's fine, but that didn't represent me at all. So I had all those feelings of, I'm getting old before my time. No one else is 29 getting a hearing aid.

I'd never really spoken about it. My mum has two hearing AIDS and we know that deafness can be hereditary, but it was not even something we'd spoken about in our family. It was just like, she got the hearing AIDS and then carried on and we never talked about it again unless we were taking the mic out of her for not hearing something and then becoming a deaf person and realising what that's like.

I was like, My God, I can't believe I did that to my own mum. And she just put up with it. We didn't even talk about it as a family, let alone as a society. So, yeah, it was very much the hearing loss terminology. And there's a whole chapter in my book around terminology, because obviously different deaf people have different deaf experiences and like to use different terminology, and I'm bisexual, and in the queer community there's different terminology and we kind of use whatever we relate to. I could call myself Pansexual, for example, or whatever, but I like bisexual, it feels right for me, and deaf with a lowercase D feels right for me, terminology wise. 

But some people use hard of hearing, some people use hearing loss like you hear in a medical environment. Some people use deaf with a capital D. Generally, if they're born into a deaf family, and a deaf history and culture and there was so much to learn, but I didn't get any of that. I was just told, you have hearing loss, you need a hearing aid, someone will call you, obviously on the phone to book you a hearing aid fitting, and then we'll see you then. 

So it was a real kind of thrown into the swimming pool of what's going on?

And part of the reason I wrote this book is because I then went to the library to look for a book, because that's the sort of geeky gal I am. I was like, I need to do some research to find out more. And I could only find educational textbooks or like, science books about how the ear works.

And I just sort of wanted someone to be like, here's the low down, babe. This is what the reality, what it looks like in real life. But, yeah, I had no idea and after I got my hearing aid fitted and that's why I actually reached out to RNID, the Royal National Institute of Deaf People. And I'm now their ambassador, because I was like, I just want to meet some other people and talk to them about their experiences, know, find out what's going on.

ZOE: Yeah. So when you said about the Davina McCall journey, so you said your first diagnosis, that was like jaw to the floor moment, so shock, and now that was when you were 29. So however many years on, are you feeling now proud of your deafness? 

SAM: Yeah, so I'm only six years on, but I now love being deaf and I love the deaf community and, yeah, I wouldn't change it for the world.

I'd maybe change the way the experience happened. I mean, I left my audiologist and then I cried in a bike storage shed in Westfield Shopping Centre. And I should say my audiologist is near Westfield Shopping Centre. I didn't go there purely to have a breakdown, although the sizes in H&M are terrible.

But the only quiet place I could find was this place where everyone locks up their bikes. So I just had a big old cry because I was so shocked and I rang my Mum and cry, mumbled to her and at the time I was doing a lot of radio and broadcasting.

I'd just done two period dramas. I'd done Call The Midwife and The Crown. I was like, I can't do those and wear a hearing aid from the 2020's. And who's ever heard of a deaf person on the radio in podcasts? I'm not going to be able to do that anymore. And it was like, this is the end of my world as I know it. Luckily, it hasn't been that. I still do all of those things and I actually do more because I'm deaf.

Like, being deaf made me write books and I'm so glad, because now it's one of my favourite things. 

JENNIE: I think it's really hard, though, because and I found it really difficult, really difficult from going from being in the hearing world, learning BSL and surrounding myself with profoundly deaf people, deaf with a capital D, but not really fully belonging in that world either.

And kind of going up to people in a pub trying to sign, saying, hello, I have a cat trying to sign and them going, go away. I'm just trying to have a pint ,signing back to me. 

And I set up my entire charity, everything that I've done 15/16 years ago on the basis of my hearing loss and not wanting bit similar to you, not wanting to be like my Dad who is profoundly deaf and getting very lost in his world.

And what I find I do a lot because this is my living, this is what I do, is I kind of go with a script of people and I go, this is my hearing loss. I'm really proud of it. I wouldn't change it for the world.
Really making a point of feeling proud of it, which I am most of the time. But there are times when I would change it for the world, when I'm with my mates on holiday and they're all having bants and they're all chatting and it's dark and I can't lip read anyone and it's all funny and I'm like, I feel really isolated.

And I found that a few weeks ago and I really kind of found myself being quite introverted and going in a little bit, or over talking and overcompensating, which is normally what I end up doing. And I'm sure everyone's going, just shut up.

I think it's quite difficult when you put yourself in a position like you and I have of talking so openly and being proud of it, but also allowing ourselves to feel a bit crappy about it at times as well, and go, actually, no, sometimes I would just like to snap the finger and hear what everyone's saying and not have tinnitus because my tinnitus drives me mad.

Do you feel like you have to do that a little bit sometimes because you are the ambassador and because of your book?

SAM: I don't, because I think I'm still proud to be deaf. There are times when being deaf is really annoying, but I always think it's not the fact that I'm deaf that's annoying me, it's the fact that society is set up so you have to hear stuff.

If we had lights on in cabs in the back, and that was just standard and it didn't create a glare on the windscreen, like cars had just been made and the people sitting in the back could see each other even at night. And it didn't create a glare for the driver. Then there wouldn't be a problem about lip reading in the back of cars. 

And if your partner just leaves the bedside light on when they talk to you before you go to sleep, before turning it off, then it's not a problem. And it's just like there's so many things that we've become used to as a hearing world in adverted commas that make life so much harder.

And so, if anything, I still feel proud to be deaf and but I also feel like angry and motivated to be like, Oi, everyone, and when my friends are all talking to each other and I feel like drawing back a little bit, it is annoying but I'm not annoyed because I'm deaf. I'm annoyed because we've all been brought up to not be inclusive. Like, we've not been taught those skills. 

Because if you were at school and you were at school with other deaf people who lip read and that just became like you just learned that the way to talk was to face the person you're talking to.

Just really little things. But it's how we grow up and we just get used to ways of doing things. So I get annoyed with stuff, but underlyingly, I'm still always proud to be deaf because I think the deaf community.... because it's interesting you said that about the not fitting in. And I agree. If I go to an environment which is all BSL communicators and BSL is their first language, I don't fit in. Because BSL is not my first language. I'm still learning it, I love it and I try my best. But yeah, I can't have a fluent, quick, one handed BSL conversation because I've learned with two hands, like, you do your exams and in a fully hearing world, I don't fit in.

But once I found my lowercase D deaf community of people who use BSL but also lip read and also have hearing AIDS and also have cochlear implants and they just get my experience. And I get their experiences, I felt more welcomed than any other community, including the bisexual and queer community.

Because as a bisexual person, I do feel like I don't get in, don't fit in, especially as a bisexual person who is currently in a relationship with a man and I'm a woman. I feel like people are like, are you though?

JENNIE: I think it's really important to say that it's not about for me anyway, it's not about not being proud of. I don't think this just goes for deafness. I think this goes for all disability. Sometimes you're just tired and you don't always want to be an advocate for the deaf community or the disabled community or whatever.

You just want to get on with what you're doing and not go, guys, can you just look at me and turn the lights on? Blah, blah, blah, blah, blah, blah.

SAM: I think the self advocacy is really annoying because I almost feel like I more so want to stand up for other people sometimes than myself because I want to help.

Whereas when it's me, I'm like, oh, I can't be bothered to tell this new person that I lip read. So I was on the radio twice this week, and both times I had to explain that I lip read. And so could we have, like, a zoom conversation while I was on the radio so I could see the presenter's mouth?

And then we go through the because I might have been on that show before, over the phone, and they'll be like, I think we had you on over the phone before. I'm like, yeah, I can cope over the phone, but it would really make my life a lot easier if I could just see the presenters and then the presenter's lips, and then oftentimes they don't know how the producer won't have done that before, so they don't have to do it.

So I literally have to take them through, like, a step by step guide of how to set up a zoom meeting and that even if they don't have that equipment in the studio, the presenter can just open it on their phone and then mute it, and then I can still speak to them the way that they would normally do it.

And yeah, this week especially, because I've been doing loads of book promos, I've been doing a lot of it. I was like, oh, my God, can someone just write a blog with all the instructions? And I can just send them the link to a blog. But also, half of that is why I wrote the book as well.

There's a chapter in the book, which is what not to say to deaf people, like, you don't look deaf, you don't sound deaf, like, all of that. And I just sometimes want to give people my own book and just be like, read chapter ten. 

JENNIE: You know what? And Zoe knows that I do this, I did it yesterday as a prime example. I went up, I said to the lady behind a booth, because I was going into a castle, it was very exciting. I said, does your loop system work? And she said, oh, I can hear you and I said, I know that you can hear me. That's not what it was. So what, I just turned my voice off and started signing because I find it so much easier if I just turn my voice off and sign. People understand my deafness. If I don't, and I speak in my hearing voice, people don't understand my deafness.

So I'm always having to go to that one extreme and I feel like then I'm faking it. I'm not faking it. It's the access that I actually need. It's just you're having to go to that one extreme so people understand it. I mean, that's why I've got pink hearing AIDS and I wear my hair up, because I want people to see I'm proud of it.

Can we talk about some juicy stuff. What about dating?

How did you find it when you were dating and getting back out there, did you go online dating? Were you disclosing your hearing loss? How did you find that? 

SAM: Yeah. So I've weirdly just written an article for Metro about one thing that happened in my dating and don't read the comments, but basically, it wasn't a one night stand. They were very keen to label it as a one night stand because I'd been on a date with it was a guy, the guy before. And I'd met him before, so I knew him. But we got together in a bar and I went back to his house and we had sex and we were a few espresso martinis down, let's just say. 

And so when I got into bed to go to sleep, I took off all of my jewellery and my hearing aid, and obviously didn't have a hearing aid charger with me because mine, I don't use batteries like mine charges in a little charging unit, so I didn't have that with me.

So I turned it off and put it all on his bedside table with all my jewellery. And then I woke up in the morning, felt so ill, like I was going to throw up and also like, oh, my God, what did I say last night? You know, all these fears come running back and I just needed fresh air, so I was like, oh, my God, I'm going to do this thing that I've never, ever done before and I'm going to sneak out of this guy's house.

But I did know him and he knew me, so it wasn't like I was going to sneak out and never see him again, but it was still a bit of a bad thing to do. Anyway, I snuck out of his house, ordered my cab, got in the cab, you know, what's going to happen?

Halfway home, I remembered that I'd left all my jewellery and my hearing aid on his bedside table, and the jewellery...I was like, well, I'll just leave that. Like, it wasn't expensive, but hearing aid, as you know, can be, like, up to three grand for one. I was like, I need it.

So I had to message him. I didn't have his number, so I had to message him through Facebook. So luckily we did know each other because we were friends on Facebook. And to message him through Facebook and be like, please, can you bring my hearing AIDS into town and leave it at this members club that we're both members of at the reception?

So, bless him, he bought it to town in, like, a little brown paper envelope with my name on, and then he just left it there and then I came and picked it up later. 

But that was a kind of funny reminder of, like, oh, yeah, there are some things to consider when you're dating and when you're deaf. It's very difficult to have a one night stand if you don't have a hearing aid charger, because you're not going to be able to hear what they say the next day, unless your hearing aid has batteries. If it's an over the ear hearing aid like mine, there's also the whole dark bars and everyone wants to take you to a date and pick the venue. And I used to sound really, I think, controlling because I'd be like, no, I want to pick the venue because this guy once took me to a....I started having coffee dates after this, by the way, in the day, because also I was like, then we're not drunk. And then I don't get swayed by feeling a bit drunk and horny. I'm like, no, do I actually fancy you? And also in the daytime, you're more likely to be able to lip read.

But this guy took me to a cocktail bar and we sat at the bar, right? So that was hard for lip reading anyway, because we were both facing the same way, which wasn't at each other. And then also it was really dark and moody and it was like just candles on the table.

So it was like I got every other word when the candle flame flicked in his direction. So all of that's really difficult. And then also it's like if you want to go somewhere on a date with like a bit of atmosphere, normally that means it's somewhere with a lot of other people, which means the background noise is ridiculous.

So I started off not telling people and then I didn't put it on my profile or anything. And for my book, I actually asked lots of people about this, which you need like a book or a podcast to be able to interrogate people because in real life that people don't seem okay with it. But when you're like, I've got a book, so I need to ask you about your dating life and what you do.

It's really useful. 

So actually, some people do put it in that I spoke to do, put it on their online bio, which I think could be quite useful, but I didn't used to do that. But then I started telling people, like, early on in the first date and I found that was useful because if you tell them before then sometimes they have a little freak out and assume that they're not going to be able to communicate with you in any way or like, how is this going to work?

Do I need to learn sign language before I come? Like they have a proper moment, whereas if they've met me and I've said hello and normally they're like, oh, okay, feel a bit calmer. 

And then I'll say, I do lip read. Just to be aware, I do have a hearing aid, so if you could face me while you're talking and don't take me into a dark corner unless we're not going to be doing any talking, then that seemed to work quite well.

But my partner at the moment and we're all in love and stuff, so it's nice. He just sort of like, took it in his stride. He was like, okay, then, well, just let me know if there's anything. And he's never asked any strange questions. And actually, when I was writing the book, I realised I'd never really shown him or let him have a good look at my hearing aid, because obviously I was always taking off and charging it and stuff, and I was like, do you want to have a look at it?

And he was like, well, don't know if you want. So I sort of let him have a good look at it just in case there was any curiosity there. And he was like, okay, asked a couple of questions, but I think for some people seem to have a real moment about it and it throws them.

And probably those are people who've never or don't realise they've ever spoken to a deaf person before and sort of don't know how to act as if we're like aliens.

But, yeah, I found that on the whole, most people were kind of cool with it and just were like, okay, well, let me know if there's anything I can do.

JENNIE: Well, that's the thing, isn't it? I don't put it on my dating profile and I like just to drop it in. But there's two first of all, I thought, right, you know what? I'll just go on a walk. I'll just go on a nice dog, walk it's in the day. Didn't think that through because you're just walking next to that person and then you're having to turn your head all the time. I'm going to break my leg here, I'm going to break my neck, tripping over because I can't...

 And then I went out on a date, exactly, that the dark corner. And I didn't say anything. And I ended up getting the candle and just putting it under his chin. And he went, what are you doing? And I just really casually went, Well, I'm sorry, I can't hear you.

I could see him trying to process it and I was like, oh, God, I haven't told you I'm actually hearing AIDS. And I lip read, but I try and make it really casual, just kind of well, I wouldn't really feel the need to tell you that I wore contact lenses or glasses, but I just try and make it a really casual because I think it's almost like the bigger deal you make, the more it can freak people out as know.

And it's about again, it comes back to the pride and being confident and all of those things and being able to have a laugh about it. I mean, when I first got my dog, I took my hearing AIDS out to have sex because I don't ike having my hearing AIDS in, and my dog came along and ate both my hearing AIDS.

I had to go to the NHS and say, you know those thousands of pounds of hearing AIDS that you've given me. My dog ate them when I was having sex. 

SAM: It's a very common thing. My dog also tried to eat my hearing AIDS, and one of my hearing AIDS, that it's like my backup hearing aid now, because it's an older model, it still has, like, a tooth indent from the dog. But my Mum's dog ate her hearing AIDS and fully destroyed them. They were just tiny bits of electronics left. But the company, you can send them off, even if they're in a terrible state, to the manufacturers and they'll try and fix it and it doesn't cost the whole price of a new hearing aid again, top tip. 

JENNIE: Well, that's good to know, actually, that's good to know. Mine was completely and utterly destroyed, so there was no saving them whatsoever. I think it's great we're normalising it as much as much as we possibly can. And I know I think that I'm a younger person, but to younger people, I'm a really old person.

And I think that to my daughter, I think that books, the books that you're writing, the children's books that you've written and having deaf characters as the main characters, I think I'm being this great advocate to her and all the rest of it, but she's just going to see me like I used to see my Dad. Like, you're old. How is this relatable? I think it's so important. It's that we make hearing and not a hidden thing and we were able to talk about it. 

And if you don't want to go so far as feeling proud, because we accept that not everyone's going to feel that way. And it's a journey, as you said, because it is a journey that seeing representation and feeling acceptance has got to be part of that journey. And you're only going to do that if you see other people like yourself talking about it. And it not being a massive thing, it just being every day.

SAM: Yeah. I think, though, what you said about with dating, like, you tell people you access needs quite casually, is a really good way of us, kind of... and I found that too. I started doing that, but then the other part of me is, like, we shouldn't have to do that because accessibility can be quite a big deal. And I think sometimes when I was on the dating scene, I wanted to make it as easy as possible for my date. And I guess now I'm off the dating scene, I'm like, no, they shouldn't freak out, and if they freak out, they're the wrong person for you. But I think sometimes, as well, I found that I wanted to kind of make myself seem less disabled to nondisabled people, so that I was more palatable for them and they wouldn't think it was like a big deal dating me.

And actually, sometimes I feel like it made them forget the things that I'd said and not take it seriously. So there's this really difficult place, and also we have a hidden disability. But even with deafness, like if BSL is your first language, you can't meet someone and not well, you can meet them and not tell them. But they probably are going to freak out if they meet you and you start signing and then they weren't aware of that.

Actually. I think it's a wider thing, isn't it, of like loads of charities have done studies recently of the fact that people feel uncomfortable communicating with a disabled person or with a deaf person. And I just think it's because the knowledge and the awareness isn't there. I remember when I went for my hearing, my first hearing test, and I'd never had one my whole life because I do think I was deaf at a younger age, but I only found out at 29.

I remember when I went to the audiologist and I suddenly walked through the doors and thought, oh my God, are they going to use sign language on the front desk? Because I don't know any and what's going to happen? And I just had this freak out and I walked up to the reception and I just didn't say anything and smiled to see what would happen.

And of course, only hearing people work audiologists usually.

JENNIE: I was going to say...it wasn't the opposite worry there, Sam. They don't know a bit of sign language. 

SAM: There are some actually amazing deaf audiologists that I follow on Instagram, but, yeah, so everyone was hearing, but I remember having that freak out and I just found out I needed a hearing aid. So it comes from that or what do you do?

And obviously you can just learn a bit of sign language or you can write stuff down or a lot of deaf people lip read, but I think, yeah, there isn't maybe like Tinder and Bumble and everything need to get together and do some sort of disability awareness kind of in dating campaign, because I think we're just trying to find love, right. And you might find love with someone who has BSL as their first language.

So don't miss out on the love. Find out and get comfortable with accessibility and how to communicate.

ZOE: I think that's all part of the journey, isn't it? And that is why it is important that when you are a confident person, that you can then represent people on TikTok or social media so that those people that are at the beginning of their journey and it is a shock, or they're not feeling pride and they're not confident to ask for their access requirements to be met, they can go, oh, look, okay, right. Sam's doing this. Potentially, if they've got a partner or dating, like, oh, yeah, look, like this is it because a lot of people don't have the voice. And I sort of always say this because I had a really quite a long journey in my acceptance of my disability, and mine's physical disability, I'd say mine took ten years, right, and a lot of therapy of going, oh, I am okay.

And I definitely did the whole thing like you did of the self deprecation, trying to disarm it to make it more comfortable for everybody else. I'll talk about myself with negative terminology, just to show you that I haven't got like a chip on my shoulder and let's make it comfortable for you.

And then you realise as you get more confident, actually, I'm really doing myself and others a disservice. Like, as much as I'm going, Haha, nothing really matters and it's all fine. Actually, as you said, people then do lose the seriousness of a message. Like, you might have told them at one point, right, that I really need this, but then, because you're taking the mickey out of themselves, suddenly you lose that importance.

And I think I really struggled with that because I didn't want to be like a campaigner or the disabled person with a chip on their shoulder. I didn't want to be different to all my friends I had been. So I definitely put myself in a negative position, I think, through that kind of dialogue.

And it is only with confidence and maturity and acceptance, I think, that I then felt, no, I don't have to talk about myself like this. And particularly with all the work that Enhance does and all the people that I've met, it's a completely different mindset. And that is why I think that then, once people are confident and they are representing on Instagram, it's vitally important, isn't it?

Because then you are going to be offering all the tips that people can make or do to break down those barriers that we're all facing. 

SAM: Yeah. And obviously we were talking earlier about when you're an advocate, as people call you, or an activist, and I do kind of preach deaf pride and deaf awareness and people sort of think I'm at the end of my journey, like, oh, and I'm at the end of the rainbow, the deaf pride rainbow, and that's it.

And no, I'm definitely learning all the time and I'm finding out new things and I'm experiencing new things. And even though I think it's so important to be proud and it's important for me to be proud to be deaf and to talk about my experience, there are loads of other experiences that I haven't been through and I can't represent, so I need to listen to those people.

And I have days where I'm tired and I don't want to talk about being deaf today, and I just want to eat Monster Munch, which I did earlier.

So I think there's also that it's like we're all human, we all can't be kind of the ideal activist every minute of every day.

And I wish my journey could have been 20 years down the line before I wrote this book because I'd have even more experience and I've met more people and I'd have more to tell. But I also felt like it was really important to get something out of that out there. Because for people like me, I couldn't find anything of just a deaf person in a book talking about their experience with also some facts, with also some practical stuff that you could also give to your boss if you're deaf and be like, read this and you'll understand a little bit more about my experience.

And I'm not saying it's the book or it's got everything in it, but I did want the representation to be there. And it's the same with my children's books. I have one behind the ear hearing aid and I lip read. And so the protagonists in my children's book have hearing AIDS and normally lip read, and they haven't learnt British sign language, for example.

And that's not to say that I love and support and welcome other children's books with deaf protagonists who use BSL or have cochlear implants or are deaf and decide not to use hearing AIDS and are born into a deaf family. I think we need to welcome all of this, like, wealth of deaf and disabled experience.

And I think a lot of the time I feel like it's a bit of a problem in the media because we've had these incredible films with deaf protagonists recently, one of them won an Oscar. But then everyone judges the deaf experience purely on these two films. And it's not the fault of the filmmakers, it's because they're the only mainstream films that people see.

And it's the same with books and representation on the TV. So that's why it's so important that we have so, like, a breadth of disability and deaf representation in the media. So I'm always, like, buy my books, but also buy lots of other books and read other things and watch other things.

And I've spoken to other deaf friends who are in the media and on telly, and we've spoken about the fact that there's only ever one of us on a programme, right? So it feels a little bit like female comedians. When I was doing live stand up comedy, it's got better. Well, it's still not great, but it's got a lot better now. But for a long time, I was only ever the only woman on a lineup, and everyone else was men, and they were like, oh, we've got a woman, though, even though there's six people on the lineup, we've got one woman, so it's fine. 

And I feel like disability feels a bit like that as well. They're like, oh, we've already got a disabled person on this series. Cool. But there's more than one of us and there's a lot of experience within that.

And also deafness, I've been told that I'm not deaf enough to represent the deaf experience, in so many words by TV producers. And I've been asked if I were to go on a programme, can I use sign language as well as speaking? And I'm like, well, no, because I'm learning sign language and I love it, but I communicate mostly orally and lip read, so I don't want to falsely represent my experience, but also a lot of other deaf people's experience. Right. Because there's 12 million of us in the UK, one in five. 

There's so many different kind of journeys we've all had within that and different ways we present our deafness, but also experience it.

And I think we especially in the media, there's a real kind of this love of one visual example of what disability is or deafness. And it's like the whole there's a big wave at the moment with disabled activists on social media talking about when they're in a wheelchair, but then they could also not be in a wheelchair and use a mobility, like a stick or an aid or also in a bookshop, being in their wheelchair and then standing up to get a book off the shelf and then being judged for the fact that they're using a wheelchair but they can also stand.

It's like, people, we just need to talk about this and we need more awareness and we need more representation.

And this term of, like, wheelchair bound, which I know a lot of the community don't identify with, but for a nondisabled community, a lot of people might assume, because of what they've seen represented in the media before, that if you're in a wheelchair, then you can't walk or stand.

I think it's not just deafness, it's like the disabled community as a whole. We need a representation of all these experiences because it isn't one size fits all, one hearing aid fits all, one wheelchair fits all. 

JENNIE: Actually. You really touched upon something, Sam, that really resonated with me. I think we kind of have this sense of internalised kind of ableism because when I was kind of in a relationship, I was, like, advocating about being deaf and being proud and yeah. And now I'm single again, I'm like, oh, my goodness, this feels very exposed and very different and very different conversation to how I've been for the last ten years in essentially a marriage.

So they're two really different things. But I think, like you say, everybody's journey, my journey is very different to yours and there's going to be lots of people's but there are so many similarities as well. And it's about that platform and educating and also just knowing that wherever you are in your journey, particularly around deafness, okay, not to be okay.

It's okay to want to ask for help and be a bit scared and maybe look at Sam and I and go, but you're really proud. We're in slightly different places and there have been times that we've spoken about where we haven't felt like this.

It's about never comparing yourself to other people. It's about where you are in your journey and knowing that there's help out there and certainly buying your book, Sam. We did a giveaway and they got snapped up instantly.

And I'd recommend anyone to read Sam's book that is even the beginning of the journey. And actually, just as importantly, if you are with someone, your partner or someone in your life, just as important to read this book so you have that understanding of what they're going through. 

SAM: And even, like the cliche I always say of, because we always see, don't we? Like, Grandad hasn't turned his hearing aid up at the Christmas dinner table, but maybe if you read this book, you find out more about what Grandad's going through, actually, and can have a nice conversation with Grandad. So I think, yeah, hopefully it is a book for me when I was there and I wanted to find out more, but I hope that it can really inform people with full hearing as to how they can be deaf allies and just make we all want to have a nice life, right?

So if you can make anyone else's life a little bit nicer by just having a little bit of knowledge in your back pocket, then that's a good thing.

JENNIE: Absolutely. That's a great way to end it. Well, thank you so much, Sam. And like I said, I know that you're not, hopefully those Monster Munch and that coke and our chat...

SAM: Our chats made me better. 

JENNIE: Yeah. Basically, we're like doctors and counsellors all in one. So there we go. But I just want to say thank you very much and we're looking forward to the next book.

SAM: What's it going to be about?

JENNIE: All right. Thank you, Sam. Bye. 

ZOE: Take care. Bye.