“It was like being drunk”: KT Tunstall on hearing loss and vertigo

EMMA TRACEY: Hello I'm Emma Tracy, this is Access All and later in the programme we've got Katie Tunstall.

CLIP [KT TUNSTALL]: In 2018 in the middle of a tour that I woke up on the bus and I'd completely lost my hearing and it was a shocker you know you just you wonder whether you're gonna be able to keep doing what you love doing.

EMMA: Love that chat with Katie all about being deaf and music it's so so interesting Beth is with me Beth you found that really interesting Katie as well didn't you because you're in an orchestra. I am in an orchestra, I play the violin. And do you ever see, what are we saying now, visibly disabled people in your orchestra or other orchestras that you might play with or whatever?

BETH ROSE: In short, in the amateur circles I am in, I can't really think of any.

EMMA: But, very excitingly, there are some disabled musicians in the Proms this year, the BBC Proms.

BETH: There are the National Open Youth Orchestra who are top-level young people that play instruments. So we're talking 11 to 25 year olds, who are disabled, neurodivergent, love their music, are excellent at it, but they don't necessarily play like your average orchestral instrument. What do they play? So some of them play the clarion. Can you remember exactly what it is and how it works?

EMMA: Is it like looking at …

BETH: Yeah, so it's like an electronic instrument that uses eye gaze, but you can change notes and things, but you can also change its intensity. It's very intuitive. And what is really amazing, so this orchestral group, they are performing a world première of a Clarion concerto. So a concerto is basically like the big soloist in the moment. And they're performing as part of the Proms Festival, which is, of course, the biggest music festival in the world.

EMMA: That is something that's not happened before, I think.

BETH: Exactly. I feel like this is a new frontier. When you think about orchestras and instruments like violins, flutes, they've all been around for hundreds and hundreds of years. The clarion is kind of the future of music, I think.

EMMA: Can I tell you what my ideal future of music would be?

BETH: Please, yeah.

EMMA: A fully accessible karaoke experience. I mean, I don't mean to bring the tone down, but I have to say, I know about three or four songs off by heart, but I just need I need every karaoke machine to have a braille display.

BETH: When they show karaoke places in, say, Japan or Korea, there are always these kind of small booths. So maybe there should be a wall of braille. Maybe it could be perspex, so you can feel the braille, but we can see you.

THEME TUNE

EMMA: Yes, I am Emma Tracy and this is Access All and it was Disability Pride Month in July but every month is Disability Pride Month here on Access All, the BBC's disability and mental health podcast. We like to shout about, celebrate, debate and concentrate on all the biggest, most important chats and stories around disability and mental I mean we will be talking about Jimothy the raccoon this week obviously pavement parking is on our minds and I am so excited you heard her at the start of the show but I have Katie Tunstall Scottish superstar on later.

Please stay tuned for that you can subscribe to us wherever you get your podcasts if you're outside the UK and if you're inside the UK it is BBC sounds and please do contact us I love to hear from you you can email accessall@bbc.co.uk.

Now to kick us off, if you are a parent or a carer of primary school aged children, you will know the struggle it is to keep them entertained over the summer holidays, to get them out having fun, touching grass as my boys would say. But the BBC Access All podcast has been hearing that loads of disabled kids are being locked out of the clubs and the camps that so many of us parents rely on to get through the summer holidays. Over the last few weeks there have been three reports released on this subject. One from Corum Family Childcare saying that 91% of councils in England do not have enough holiday childcare for three-quarters of their children with special educational needs and disabilities. So what is going on and what is the impact on children and families? Well, I've got three guests who know all about this situation. We've got Stephanie Darragh, who is struggling to find clubs for her son, Glenn. We have Shumi Saeed, who got so frustrated that she took matters into her own hands. And Harriet Edwards from disability charity SENSE, which has done its own research on the subject. You're all very welcome to access all. Good morning. Thank you for having us. Now, can I start with you, Stephanie? You have two children. One of them is your son, Glenn. Tell me a little bit about your family and and your kids.

STEPHANIE: So I live with my husband. We have two boys. My youngest is called Heath, who's seven, and my eldest, Glen, is eight. He has a few diagnoses, so autism spectrum, condition, hypermobility, delayed motor skills. And he has recently started at a SENS school as of September and currently wants to be a marine biologist.

EMMA: Oh, I love I love that. Tell me about how your two sons' summer holidays differ.

STEPHANIE: So we plan our holidays entirely around Glenn's provision. So Glenn will go to a provision for two weeks over the summer.

EMMA: What kind of support does Glenn need at a holiday club? You know, why not send him to a mainstream club? He doesn't actually require one-to-one provision.

STEPHANIE: He requires more smaller environments where they're less loud and less busy to cater for his sensory needs. He needs structure and communication ahead of time on where he will be and what he'll be doing. Whereas Heath will turn up to anything and everything, make friends, and is just happy to get stuck in.

EMMA: So two very different boys. Corum Family and Childcare found that councils themselves don't really know a lot of the time what's out there because they don't keep records and there's so many different providers. Did you start looking for clubs quite early?

STEPHANIE: I do everything very ahead of schedule. And that's one of the reasons we've secured holiday places for him, because most of them book out and there aren't enough places to send children. So we're lucky that because I book on the day things open, we tend to get some provision. I found there's a lot of barriers to even booking in the system. So there's a lot of very outdated calendars. There's a lot of things in there that you have to attend with your child. So for us, we found one thing that he could attend kind of over the last two years. It was a complex needs special school, and it didn't suit him at all. Most of the children were non-verbal. They weren't cognitively able or any kind of relation to Glen in terms of peers. Fortunately, his new school now has a holiday club, which he does attend. So it's a little bit more suitable for him. It's with people he goes to school with. It's in his school. So there's that familiar kind of environment. But apart from those two offerings, we didn't find anything that suited his kind of interests or needs, definitely not local either.

EMMA: Even the one in his school, does he like that one?

STEPHANIE: No, he does not like that one. It's out of routine. They do a lot of activities and kind of slightly different stimulating things that are very well-meant and they're very, you know, they cater a lot to the sensory things, but they're not his routine. They're not what he wants to be doing. He's maybe dealing with children from other classes that maybe he doesn't get along with so well, or they have audible stims that impact him from a sensory perspective.

EMMA: Yes, something that's accessible for one isn't necessarily accessible for the other. And it's not it's it's not a break from his school building either. You know, I mean, what is the knock on effect on Glenn of not having that stimulation during the summer and not having somewhere to go to?

STEPHANIE: So for us, it starts mid-june. It starts about a month before the summer holidays. There's definitely a raise in anxiety, a lack of sleep, and regulation at home and outside of school. For him he'll then attend camp and come home and that's mostly the limit of what he's able to do because once he is home that's his time to regulate from being forced to go to a camp he doesn't want to be in.

EMMA: And what about all that time when there isn't camp outside those two weeks? There's four more weeks there?

STEPHANIE: There are. So I started my own business two and a half years ago and I work remotely for the majority of what I do over the school holidays. I can't work during summer because they have nowhere, well Glenn in particular has nowhere to be, but also he needs to be at home to have some rest and this is our kind of compromise. He'll go to camp for some of it and he'll stay home for some of it.

EMMA: What does Glenn's club cost compared to Heath's?

STEPHANIE: So Glenn's costs about £25 this year. Heath's provision for very similar hours is £12 for the day. We've had Glenn's provision in the past be five times the cost of Heath's.

EMMA: Gosh yeah there's a lot to think about there Stephanie, thank you so much. Harriet Edwards is with me from SENSE Disability Charity and SENSE has taken on to do some research around this holiday club's issue. They're a charity that supports children, young people and adults with complex needs. Harriet, the anecdotal evidence from Stephanie but also from lots of other parents that I've been speaking to is strong that there isn't enough provision out there.

HARRIET: Every school holiday we hear the same thing that Stephanie has said, the stress and anxiety months before, trying to find a provision. Essentially, there's a lot of people in this country that will have nowhere for their child to go this summer. So the research we did, we contacted councils across the country to find out if they were commissioning any spaces in holiday clubs for disabled children. And we found out that there were 11 areas that didn't have any holiday clubs commissioned at all. And actually, where there was provision, it was really minuscule, similar to the and report. So we estimated about 6% of disabled children nationally can attend a commissioned holiday club and this is just one of the types of support councils can provide. There are a raft of things that a local area will put on but what we're talking about here is really that child care offer which enables families to carry on working, enables disabled children to make new friends, gain new skills, go out and do something they want to do.

EMMA: You have a personal take on this as well.

HARRIET: I do indeed. So I have a six-year-old called Reggie. He has cerebral palsy, and at school he gets one-to-one support, and that's through his education healthcare plan. But in the summer holidays, if he needs to go to a holiday club, they can't support him at that level of support. So the options we have is we either are told to pay for a support worker to go with him, which is about £150 a day, or we are lucky enough be able to go to a commissioned holiday club in our area. So we get 10 days, we really love it, but actually this year what happened is our annual review wasn't carried out quick enough, which means that my son can't go. So we're left balancing our jobs, both in full-time work, our daughter's needs.

EMMA: Okay, an annual review, that's a social care review, right? Where does social care come into this?

HARRIET: So children's social care is key here. It's the support they get outside school. But what we know, there's been a big review last year from the Law Commission, and what we know is that that system is failing disabled children, is just not good enough. There is no national framework in place for disabled children, no national eligibility, and no clear standards for what disabled children should be receiving. So that's why we're seeing this postcode lottery and provision, because local authorities are essentially not having to put that standard of support in place.

EMMA: Yes, there's no framework, but what should parents be expecting councils to do?

HARRIET: Well, legally, every disabled child is entitled to an assessment from Children's Social Care in their local area. And that social care team, if they see that there's a need there to access activity, to access leisure, to have some support to do that, there is funding they can give that child to help do those things. So for example, my son gets support to go to swimming lessons because he needs one-to-one support and they're £50 for each session for 30 minutes, but it can be really different for each child. That's the beauty of social care. It can be really tailored, but ultimately what we know is a lot of different barriers are being put up in different local areas. One child might be receiving swimming lessons support in one area, in another area, they're told they're just not eligible. So what exactly is SENT calling for? Well, we want to see a much clearer plan for a national plan for children's social care. This must look at the law, it must look at putting a national eligibility criteria in place, and really tailored assessment routes for disabled children, so that every family, if they need that support, can reach out, ask their local team and they will be provided what they need.

EMMA: But we keep hearing that councils are strapped for cash. What if there's nothing there once you've had that assessment?

HARRIET: Yeah, exactly. So it has to be matched with national funding as well.

EMMA: Shumi Saeed is with me and Shumi got so frustrated with the situation that she took matters into her own hands. Hi Shumi, how are you doing? Yeah, I'm alright, thank you. You have two disabled children. Tell me a little bit about Oscar and Lucy.

SHUMI: I have three children. They're all autistic with a complex need. So Oscar and Lucy have also a severe learning disability, but their needs are quite so complex because of that. So Oscar's non-speaking. Lucy can say some words. They have a cognitive age of between 18 and 24 months. So if you think about it, they're aged eight and 10. So, you know, they have very little understanding of a lot of the things that go on around the world. And what do they love? Again, they're very like chalk and cheese. So Lucy loves water, water play. Oscar is more wary of new things, of transition and change. So he does need a lot more coaxing, but he does love running around in the great outdoors.

EMMA: So tell me about what their days look like in the school year and then how that changes in the summer holidays.

SHUMI: I think with the school year, there's more of a structure, a routine. So, you know, they know when they get up, they get dressed. they have their breakfast, um, and they know that transport will come to pick them up. They're always very happy to go, but when you come to the holidays, it is like someone snatches all that away from them. We have a lot more upsets, a lot more, we've had quite a lot of meltdowns, um, from Lucy. Oscar will become quite even more reluctant to leave the house or do anything. It's not safe to take them out on my own. I had to stop, um, a few years ago because they got too big for a buggy and because they were running into the road and not understanding danger. So what about holiday child care or clubs? I knew for them it would have to be more specialised. I have looked at the local offer. I mean there's there's two main ones that I've come across but like one of them they actually provide Oscar's respite which I'm very happy with but I believe they've got quite a long waiting list. So you know, that's why I kind of decided to kind of take things into my own hands. So what did you do? I've hired a local church hall. It's got like parking on site, it's got disabled toilets, and I've just gone to the toy library. I've borrowed a load of toys, free play, free and easy. And parents can come, they can sit, they can chat. I get them a cup of tea, a bit of cake. So it is just very low demand for everybody. And the way I've paid for it is I just did like a crowdfunder. So I basically put it out there and said, look, this is what I wanna do in the summer holidays. So I raised about a thousand pounds. So that is paying for the whole hire. That is paying for the food and the drinks and there'll be other treats and things that are coming up. So I'm not the most organised person, but I think if I'm determined to do something, that hyper-focus comes into play. So yeah, it's all set up now.

EMMA: Wow, and you've had a session already. What do parents say to you at the end?

SHUMI: That they really enjoyed it and, you know, they felt very welcome and the kids had a really good time.

EMMA: Thank you so much. Shumi is under West Northamptonshire Council, who told us.

In West Northamptonshire, families can access a range of free and subsidised support. This summer's holiday activities and food programme includes 7 SEND specific camps providing more than 650 places alongside 29 inclusive mainstream camps. Families who are struggling to find a suitable provision are encouraged to contact our SEND service for advice and support.

Stephanie's council is Norfolk County Council and they said... We've been working hard to increase opportunities for children with SEND in Norfolk, particularly through our holiday activity and food programme, with 40% of those taking part now having SEND. Although children with SEND don't automatically have entitlement to a free place, there are places available where professionals can refer families to the scheme if they think a free place is needed.

And just to say the holiday activity and food programme reference there directly relates to children who get free school meals. Tell me your story. What is there for your disabled child during the summer holidays? Have you found an innovative solution. And actually as a disabled adult I'm quite interested in hearing what you guys did in the summer when you were disabled children. Email accessall at bbc.co.uk. Thank you to all my guests. Thanks to Shumi Saeed, to Stephanie Dara and to Harriet Edwards from the Charity Sense.

EMMA: Beth is back. Hi Beth.

BETH: Hi Emma, great to be back.

EMMA: So we're going to talk about some of the disability and mental health stories and chats from the last month.

BETH: Lots happens in these months that fly by.

EMMA: Pavement parking is quite interesting to me. It's banned in Scotland where I live and it's banned in London and it's banned in Exeter as well. But it's not anywhere else, elsewhere, only the police can enforce.

BETH: So this is where drivers sort half park on, so they have two wheels on the pavement and kind of like block off at least half of that pavement.

EMMA: At least half, if not all. And there could be a car on both sides as well, depending on the situation. And the BBC did some freedom of information requests and they found out that half of councils allow pavement parking, but not just that they encourage it. So they have like marked bays on the pavement and signs, which I didn't know that that was a thing.

BETH: I didn't know that was a thing either. that I don't think I've ever seen a pavement with markings on.

EMMA: Well, can we just take a moment to talk about the issues around having cars on the pavement for people like me who can't see or other disabled people or just like people who have boggies. If it's alongside Bin Day, OMG, I read someone in the BBC's article said it's like a pinball machine. You're like pinballing from one side to the other, which is fine if you've got a cane or a dog, but more difficult if you're using wheels to get around, to get around the car, obviously if you get into the road, right? And this brings me to a really interesting example. I don't know if he'd seen the BBC article, but on the same day as it came out, this blind comedian in Brighton, Daniel Walker is his name and he put in his Facebook that he'd popped out to the shop and he'd come across a vehicle on the pavement. Let's hear what he said about that.

DANIEL: Monday evening, I just returned from a choir rehearsal and realised I needed to go back out to go to the shop. So, I got my guide dog walking down the road, round the corner, and was obstructed by a large vehicle. What turned out to be a Brighton and Hove council refuse truck, one of the ones with the cage on the back. yes and it was completely on the pavement against the bushes so i tried to navigate round it in the road and unfortunately and no fault of you know the drivers on the road i was clipped by an electric vehicle that i didn't hear coming the other way

BBC RADIO SUSSEX PRESENTER: Oh no

DANIEL: And it was you know it only just sort of clipped my stomach with a wing wing mirror sort of just yeah that's too close Yeah, physically, it wasn't anything, you know.

BBC RADIO SUSSEX PRESENTER: Yeah, but you're a whisker away there, aren't you?

DANIEL: Yeah.

EMMA: So it's shocking, isn't it, Beth?

BETH: That is so shocking. That combination of not enough room on a pavement and quiet cars coming behind you, that is really scary.

EMMA: Apparently in September, councils are going to get more powers to kind of enforce pavement parking bans and restrictions. Someone from Brighton and Hove council came on straight after Daniel on the radio and apologised and said that they would look into it so.

BETH: But I wonder if most people didn't know that that this was a thing and now they've read the BBC article they're like oh okay so I can park on some pavements.

EMMA: The article had loads of examples of why you shouldn't so you would like to think that people would say well it is allowed but I've now heard about people who have been maybe clipped by a car or who who it stops them leaving the house and it stops them going to where they need to go, because what they were saying was it shrinks their world. So if they can't get past on a pavement, they might not go to the choir practise that's on that street or they might not, you know, go to the bus stop and get the bus somewhere. It might just feel too hard because for lots of disabled people, it's so it's such a big deal to leave the house, you know, with ableism, with inaccessibility, but also just anxiety and confidence issues and stuff. So I think it did a good job, the article of just explaining why it shrinks people's lives and shrinks the world not being able to get past.

BETH: I mean I can totally believe it and let's not even get on to the case of scooters, e-scooters and bikes being littered around pavements and stuff like that. We'll save that for another day Emma.

EMMA: Yes. Beth, you always have a big report in your inbox that you need to talk to us about. What is it this time?

BETH: The interim report from the Tims review, where basically Sir Stephen Tims, who is the Minister for State and Social Security, even now after we've had a change of Prime Minister. So we have quite a few international listeners, so you're probably aware that the UK seems to like to change its Prime Ministers quite regularly. That has happened recently. We now have Andy Burnham in situ and he gets to kind of pull his crack team together and there are a lot of people that change jobs. But so Steven Tims stayed in place and he is doing a big review into personal independence payments, which we often refer to as PIP. And basically it's financial support for those extra costs of being disabled. It doesn't matter if you work or not. You can still qualify. And its idea is that it offsets the disability price tag or tax, which scopes say can cost a thousand pounds a month for someone disabled to just live their average life. So they are looking at whether PIP is working, 40,000 of you have so far got involved in the consultation and this was kind of the midway point which told us what they think of the current system, not about what happens next.

EMMA: So what do they think of the current system, what is the situation being laid out before us in this interim report?

BETH: Well there are a few choice words, there was dehumanising, demeaning and not fit for purpose. Basically PIP came in in 2013 and they say since then kind of the disability landscape has changed hugely. We understand it a lot more, there are lots more things to add into it so neurodivergence, mental health, things like that. They basically say they need to get a grip on what the landscape looks like now and then how they run the scheme. So do people need really regular interviews to check what they need? Some people's conditions are not going to change so why do we interview them every two or three years and also you know we hear this a lot like the numbers have increased so in 2019 about two million people claimed PIP that has increased to four million people in just the last year or so so it's doubled in number and everyone's in agreement that like something needs to be done to make this a much better system for all. Okay so what happens now? Well the next thing is the full report which is in the in the autumn and that should hopefully come with some plans of action. What we do know is so Andy Burnham has said that he may impose extra conditions on how someone can apply or receive PIP but he does not want to make any crude cuts to the financial aspect of it. That's kind of all we know at the moment he at time of recording he's been in position for like six days and I know when I started a job six days is not very long at all to get you know feet under the table.

EMMA: And high up in his mind will be what happened the last time that the government tried to change Pip in a big way and basically a backbench rebellion happened.

BETH: This time last year a bit later in the summer a Sir Keir Starmer, the then Prime Minister, wanted to make five billion pounds worth of cuts to Pip. He was really going to tighten up the eligibility. It caused a massive outcry and his first rebellion and his tenure and kind of arguably the beginning of the end for him. It was a slowly protracted way out, but it was the first of several U-turns and rebellions. So everyone is kind of watching what Andy Burnham is going to do. And then just to throw in another little bit, he's really quite passionate on improving social care and the fact that so many people have to spend so much money getting that support if they're unwell, if they're elderly and they need support to live independently. He is wanting to tackle that, which is something that he did in 2010 when he was the health secretary. So this has obviously been at the back of his mind for a long time.

EMMA: Okay Beth, thank you for laying that out for us and helping us understand what's going on there. Now listen, do you think that Jimothy the raccoon gets disability benefits or social care?

BETH: I'm going to say not because I believe Jimothy is a citizen of the United States.

EMMA: Right, okay, so maybe he gets Medicaid? Oh maybe, maybe. Let's, we should find that out I think. You're familiar with young Jimothy yes? I mean I am a little bit but fill me in. Well he was spotted running around Seattle and the video was taken and it went viral and people have been particularly interested in him because he looks a bit different. He's got something called short spine syndrome. Now I can't see him, I've heard a lot about him but I need to know what he looks like.

BETH: So um, Jimothy is a raccoon and like he looks like a raccoon, he's got those markings, he's grey and black but because he has his spinal condition his body is much shorter and he has a very rounded kind of like tummy and back.

EMMA: I think some people are thinking it's sort of gone into the realm of inspiration porn now Beth. What, Jimothy the raccoon? Well yeah I mean I know it's a little bit of a leap but it's kind of you know he's doing it for, you know, he's just going around his day, he's doing his best despite having short spine syndrome and isn't he cute and can't we all learn from Jimothy?

BETH: I'm sensing some objections from you here on this, Emma.

EMMA: Oh no, I mean people can share what they want and, you know, Jimothy is getting by. He's, I'm sure he's been in a good few bins the last week or so and like enjoying his fame. People are probably leaving out chicken or whatever raccoons eat. So, I mean, fair play to Jimothy. And I never it's never the disabled person slash animal that is at fault, I don't think in inspiration porn. It's the non disabled people who see a disabled being and have to connect it to how hard their own life is or whether, you know, if he can do it, I can do it. You know, if he can scamper across the road in Seattle with a short spine syndrome, I can, you know, I can do the hard thing or climb the mountain or, you know, do a, do a thing. Whereas actually he was just born with a shorter spine.

BETH: Yeah, but he is cashing in right now. Well, he isn't, but people are cashing in on him. So you know, what's he going to get out of all this? Hopefully just some chicken. I don't even eat chicken. I feel like they don't eat chicken, but I'm not sure what they would eat, but you can already buy t-shirts with a hot Jimothy summer emblazoned across it. Would you like one, Emma?

EMMA: No, but I love the name Jimothy.

BETH: Well, I was googling Jimothy, as people around the world were. If you actually put his name into Google, you get this cartoon Jimothy scampering across your screen so you can actually see what he looks like. Also, you know how sometimes they bring up related news stories or whatever? There is a rapper in North London called Jimothy Lacoste, and I feel like this is gonna be his summer because of Jimothy the Raccoon. Thanks Beth!

EMMA: KT Tunstall, international superstar, Scottish legend, singer-songwriter is my guest this month and she's just written music for a show called The Singer about a deaf performer and his unlikely friendship with a down-and-out hearing musician and that's touring Scotland just now. She's written those songs to be as impactful for a deaf audience as a hearing one and she's brought her own experience to this. Katie lost the hearing in one year in 2018 and her brother was born deaf. I hope you enjoy our chat. Introduce us to the singer, what can people expect?

KT TUNSTALL: Well I think first of all it's very exciting creatively for me because the music music is quite a departure from what I usually release myself in terms of the sound of it. And part of the reason for that is that Cora Bissett, the writer, and I really wanted Joe, played by Jamie Rhea, who's an incredible deaf actor, to really actively participate in the creation of this music on stage. And so a lot of this music is focused around how Deaf community experience music, and a lot of that is through the power of the rhythm of it and the kind of power of the beat. I always described it to Cora as trying to do Hozier meets Massive Attack. It's a scene where people at the Barrowlands and they're watching the characters do this song and they're genuinely blown away. And I said to Cora, do you know what? I don't think people would be genuinely blown away by someone just doing sign language to a song. I think it's got to be more than that because people have already seen that. And so we put it to Jamie. So he had this pack on his back, and it's sound responsive. So it buzzes to the beat. So he gets a physical signal of where the beat is, he can feel the beat through the speakers, but this pack is giving him more specific feeling of the beat. And so I said, well, if he can feel the timing, that means that he could trigger the beats, he can write the beats, he can, you know, we all know Evelyn Glenney and her brilliant, her feeling the music and playing percussion, but Jamie could actually play the beats. And he was just so into it. And so he is triggering these amazing electronic beats and playing these samples during the song. And I've never seen a deaf person do that. And Jamie talks a lot about how there's certain songs that the deaf community really particularly love. One of them is Human by Rag and Bone Man.

I'm only human after all. I'm only human after all. Don't put the blame on me.

KT TUNSTALL: They can feel the emotion through what they are feeling through the song. In the show, we're actually going to have a few moments where the sound design changes to where the hearing audience is only really hearing and feeling what the deaf audience are feeling. And then we're just making sure that the deaf audience really, really feel the music. So we're so Gary Boyle, the sound designer, is making sure that there's a really great kind of low end vibrational aspect to the show from a sound point of view. It was just this challenge and Cora had talked about how she had no idea at first how to make a show that is 100% as impactful and emotional and understandable for a deaf audience as it is for a hearing audience. And she's done it. And it's incredible.

EMMA: And you've done it as well. And I've managed to do it. So how did you get involved in the first place? How did this partnership come about?

KT TUNSTALL: Well, I'd started kind of branching out into musicals. It was something that I was really interested in doing, particularly since Sara Bareilles' writing Waitress, and just seeing a singer-songwriter really own that space and bring a more kind of conventional pop songwriting skill set to the theatre. And I was just thinking to myself, what can I do that means I don't have to spend the rest of my life on a tour bus that doesn't have a proper toilet on it? I would like to sort of try some other things in my life. And so I'd been working with Craig Ferguson on Saving Grace, we're still working on that one. And then also written the songs for Clueless, the musical that was on the West End in London. And then Cora just, you know, realised these ridiculous personal crossovers with my life with this show where, you know, my brother is deaf, as you said, I've got hearing loss. I've definitely been a busker in Glasgow that would have been there done that. And then also Cora was really interested in using looping as part of the kind of creation, not just of songs in this show, but also like creating the atmospheres of where we are in locations using the loop pedal in that way. So, I mean, they just there couldn't be more personal aspects to it.

EMMA: Yeah, I mean, we are a disability mental health podcast, So I am gonna talk to you now about the hearing loss and the crossover there. When did you realise something was different with your hearing?

KT TUNSTALL: So I was definitely starting to have problems about 10 years prior to actually going deaf where I noticed that I was getting tinnitus but I also noticed that I wasn't hearing top end, like, you know, high signs. I couldn't hear the shower in that ear and I was struggling to hear conversation very clearly if someone was on that side. And I just thought that was it. But I think that was just the sort of step one of that year really properly breaking down. And then it was in 2018 in the middle of a tour that I woke up on the bus and I'd completely lost my hearing. And it was a shocker, you know, you just, you wonder whether you're gonna be able to keep doing what you love doing.

EMMA: What did you do in that moment? Did you have to keep going or?

KT TUNSTALL: I did two more shows after the hearing loss occurred. I still had the tinnitus and it was still ringing but then everything else was just coming through one ear and it was just completely overwhelming. It was very traumatic. I kept getting these weird pops and clicks and rhythms and tones coming into this ear and then after a few days it was just completely gone.

EMMA: What was going through your mind then as a musician who relies heavily on your ears?

KT TUNSTALL: I was actually very distracted from the deafness because I got very bad vertigo at the same time and so for three months I basically couldn't walk, couldn't drive, you know, you're holding onto the sink when you're brushing your teeth, you think you're going to fall out of bed when you're just lying there. It's just you feel like you've drunk a bottle of tequila. you're just permanently drunk like you can't focus on something and that honestly was way worse than the deafness it's really really tough you get nausea very very debilitating and so I was so glad when that cleared up that I was like I can handle this deafness no problem as long as I don't have that what did your brother say about it did you contact him my brother was pretty funny so I remember calling him saying you know I've got I've gone deaf in this year and he just got out the tiny violin. He went, oh, poor you. And I was like, I'm a musician. You're a bloody tennis coach. But it was and you know what? It was really great to have a sense of humour around it. It was really I realised how powerful keeping your sense of humour in difficult circumstances is.

EMMA: And are you guys a BSL house? Does he use BSL? No.

KT TUNSTALL: So because we grew up in St. Andrews, it was only 10, 11,000 people in town when we grew up. It was just a small place. And so my mom and dad were really aware that he wouldn't really be able to talk to that many people. I mean, almost no one spoke, you know, communicated with BSL. So they taught me to speak and lip read. And then he actually learned BSL when he went to college later when he was 17. So, and one of the really amazing things for him was that when he arrived at college, there was many friends that he made that were less deaf than him, but they didn't speak. And so they would go out to the pub and actually Dan would end up being this interpreter between hearing people in the pub who were wanting to talk to the deaf people and vice versa. We all noticed that it really gave him an amazing level of confidence being in a deaf community and finding a great group of friends who were deaf and just being able to, I think, probably share the experience of growing up, of being deaf.

EMMA: Community. It's like you hanging out with other musicians, I guess.

KT TUNSTALL: Exactly. Exactly. You find, even when you're not talking about the subject itself, you know that that person's been through the same thing.

EMMA: You've had some problems with the other ear now as well. So it's okay.

KT TUNSTALL: I was just having to be very, very careful with the other ear and really like keep cognizant of the health of that other ear because I've got to keep that one good now.

EMMA: So what do you do to mind it?

KT TUNSTALL: If I'm really exhausted or really stressed, my tinnitus gets really bad, it's literally like a stress-o-meter. And if it starts getting bad, I'm like, Katie, you've got to stop, you've got to rest, you've got to, you cannot just keep pushing, pushing, pushing and think that you can, you know, just bully your way through exhaustion. And I have to just step back and it's actually very helpful.

EMMA: So do you have to cancel things?

KT TUNSTALL: I really try to avoid that because performing live is such a tonic for people in this day and age to come together. They're not on a screen. It's actually real and you're in a room with other human beings. I think it's a really important and meaningful thing more and more to be together watching a performance. And it's really important to me to not cancel stuff. So I just have to make sure that I leave enough space between things these days to just make sure that I'm recovering in between tours and working. I have this really cool ring. It kind of shows you how much sleep you're getting, shows you what your recovery is like, and that's been really helpful for me. Because I'm raging ADHD undiagnosed, I can work for 18 hours straight, no problem doing something that I love doing, which is music. And so it's very normal for me to run myself into the ground because I'm having fun. And so this thing is very good for telling me, do you know what? You should probably slow down and just take it easy because you didn't sleep well last night and you've taken 25,000 steps. I'm like, OK, I can still actually have a nap and a cup of tea.

EMMA: So you're literally you're balancing your ADHD undiagnosed with the ear and making sure that's good. Why have you not got a diagnosis or do you think it would help you?

KT TUNSTALL: I don't really know how you do it. I guess you just go to the doctor and they ask you questions and you and you say, yes, I sometimes sort of wake up in a room in my house and have no idea why I'm there. And yes, I lose my phone 20 times a day. And yes, I have zero understanding of time. And yes, I can work for three days straight if I like something and no, I can't do anything if I'm not interested in it. and I have a problem with authority. I basically like take all the ADHD boxes. I would be quite interested to get a diagnosis for it, but at the same time, I'm not interested in taking drugs for it. Why not? Just because I don't think it's something I need to medicate. It's just been really helpful to read up on it and understand that this is actually a set of well-known symptoms of something, but I've seen many people talk about ADHD as a superpower. And I think that I really relate to that. That hyper-focus has led to me being extremely productive and very, very hard working when I need to be. And I think it's just helpful in terms of the more difficult aspects of it. Like, I'm terrible at interrupting because I get very, very worried that I'm going to forget what I'm going to say. And I do forget what I'm going to say because my brain will pinball to something else. And so instead of waiting until someone's finished a sentence, I'll, you know, just go straight in. And that's very annoying for my partner or for my friends, you know, if I'm constantly. So I think it's just really about educating myself and being curious about it. And it's been really fascinating.

EMMA: Let's go back to The Singer. The show description says that prejudice and the industry's ableist blind spots start to close in on the musicians. And ableist means discrimination towards disabled people and deaf people. What do you think the industry's ableist blind spots are?

KT TUNSTALL: I think the industry is somewhat risk averse. So they're gonna, you know, whether it comes to live shows or what they are signing to labels, you know when I was trying to get a record deal, I remember one A&R guy saying to me, oh, we really like you, but we've got a girl who plays an instrument. I'm like, you've got a girl who plays an instrument. How many guys have you got that play an instrument? Like what are you talking about? And And so even me, just being female, I was getting this weird pushback that we don't have room for more than one girl who plays something, do you know what I mean? So what chances a disabled person or a deaf person got when they can't think past that? It requires, I think, the chutzpah of the unconventional performer to just make it impossible to ignore you. But I think becoming a professional musician is a bit like becoming a boxer. It's like, don't get in the ring if you've not got the nerve. It's definitely a hustle. And the best way I've found to counter ableism or any kind of prejudice is just be brilliant. Get really, really good. Don't do 10,000 hours, do 100,000 hours. And it took me 10 years, and I didn't get my deal until I was 29. And you're gonna get knocked down, you're gonna fail, you're gonna have people telling you you can't do it. And you just have to continue being brilliant. Being an artist, being an artist is not easy. It's not an easy choice. And it's, I'm sure, even more difficult. I mean, without doubt, more difficult when you have any kind of disability. But at the same time, the story that you have to tell as a disabled person is extremely powerful and put it all into the work.

EMMA: Katie Tunstall there and the show she's written the music for, The Singer, is touring Scotland, including the Edinburgh Festival Fringe later in August. That is almost it for this episode, but before I go, do you remember we had Danika Echols and Tom Wentworth on last month about their disabled-led new version of the Secret Garden. Well, near the end of that conversation, they both talked about getting medically gaslit, so not taken seriously by medical professionals. And that was something we just wanted to get into a little bit more because we've heard disabled people talk about that lots of times. So Beth and I dug into it, wrote an article for the BBC website, so this is your reminder that we are not just on this monthly podcast, you can find us too on the BBC website and if you're really lucky on your BBC radio and BBC telly as well. Now we were also talking about festivals, loved that section and Joe wrote in from the soundabout festival they run music workshops and music events all year round for people with kind of high medical needs and who need care but twice a year they do a day-long festival and it's all on Zoom and they have caregiving breaks between acts which I really really love and they also base it all around a multi-sensory experience. I really love to hear about these kind of innovative festival options so keep those coming. Best thing about this one, No camping. Yeah. That's it for Access All for August. You can contact me, accessall at bbc.co.uk and I will see you next time. Oh, finally, finally, finally. This is definitely the last thing. I just want to say best of luck to the National Open Youth Orchestra with their Clarion Concerto. They'll be at the Bristol Beacon on the 9th of August as part of the BBC Proms and I'll catch you next month. See you then.

Bye.