The Minister Before Christmas
The people waited and, lo, she did arrive.
Mims Davies is the new disability minister but she's in a lower ranked role than her predecessor with other duties to attend to. We speak to James Taylor, Scope's Director of Strategy, plus Caroline Nokes, MP, and Vicky Foxcroft, Labour’s shadow minister for disabled people, about what many interpret as a de-prioritising of disability issues.
Radio 3's Dr Hannah French, a former flautist, joins us to talk about how her relationship with music changed after she became disabled. She's on air across the festive period including Christmas morning to help set the day up with carols and classics.
And, Nikki and Emma on sleep and adorning your house with accessible festive goodies.
Presented by Nikki Fox and Emma Tracey. Recorded and Mixed by mixman Dave O'Neill. Produced by Damon Rose, Beth Rose, Emma Tracey and Alex Colins,. The editor is Damon Rose, senior editor Sam Bonham.
Follow us on the X platform where we are @鶹AccessAll - or email accessall@bbc.co.uk
Transcript
18 December 2023
bbc.co.uk/accessall
Access All – episode 83
Presented by Nikki Fox and Emma Tracey
NIKKI- Not so long ago you were talking about decorating your house, were you not?
EMMA- Yes I was, and I was saying that I was going to get some help.
NIKKI- Yeah. And like a child I got very excited about the fact that you as a blind woman, I’m sure you don’t mind me saying because my goodness you certainly say it yourself.
EMMA- Yeah, it’s okay, I don’t mind you talking about my being blind.
NIKKI- I know you don’t. I know you don’t. But you actually did do it, didn’t you, and you sent me some pictures or you sent us some pictures on our WhatsApp group. And this is by no means a criticism, Emma, but I really like the way the star is slightly on the wonk.
EMMA- [Laughs]
NIKKI- It’s just slightly on the wonk. But I like it, I think it adds character.
EMMA- That’s basically me, it’s basically a-
NIKKI- Well I think it’s because your ceilings are so, well actually I was going to say high, and this is quite a big tree actually.
EMMA- But can I just say that actually my favourite bit of the decor that you don’t have pictures of, is I think I’ve finally settled into the fact I’m blind, it’s my house, and if I’m going to decorate it for Christmas I should get something out of it. 41, I am, and I think this is the first year I’ve actually said to myself, “This is for me too, this is not just for everybody else.”
NIKKI- Why on earth would you not think that at all?
EMMA- Well I’ll tell you why. Because actually generally it doesn’t make much difference to me because the trees aren’t on all the time, but I can see light, and I don’t tend to put in any smelly things really. But this year I’ve gone around and I’ve got loads of battery candles and tealights and I’ve got lanterns and little different ornaments, and I’ve put them in them so when you turn off the lights there’s lots of different little Christmas twinkly lights that I can see. I really like that and I really like going round and turning them on and off, on at the beginning of the evening and off at night. I feel like I can see them and it’s nice and it’s Christmassy, and when people come in it looks Christmassy with all the little twinkly lights in various parts of the house.
But also, and honestly we don’t ever use scented candles or diffusers in our house for some reason, we will be now, but I’ve put in a few Christmas reed diffusers. One of them smells like Christmas and one of them smells a bit sort of fresher. But isn’t it amazing how I feel like I’m still growing into my blindy skin?
NIKKI- Ems, you think about things a lot deeper than I do.
EMMA- Well it just occurred to me when I was putting the diffusers in for the first time, I was like, ‘How am I doing this for the first time?’ I just hadn’t thought of reed diffusers. And now I have, I’m probably going to get addicted to them.
NIKKI- I still don’t know what that’s got to do with you being blind?
EMMA- When you walk into the house you see all the decorations up.
NIKKI- Got ya.
EMMA- When I walk into the house I smell Christmas.
NIKKI- Got you. I understand. Okay, yeah.
EMMA- It’s the same with the real tree, I would know there’s a Christmas tree there if there’s a real tree. I wouldn’t know if there isn’t a real tree.
NIKKI- You find out all sorts, don’t you? It’s amazing you still find out new stuff even in your 40s, don’t you, eh?
EMMA- I don’t know how to wrap a present.
NIKKI- You don’t know how to wrap a present.
EMMA- No.
NIKKI- You’re not missing anything, it’s painful and you’ll cut your finger.
EMMA- I know, but I feel like I should.
NIKKI- Listen Emma, that’s where I’ll say I could probably wrap a present, maybe just, but I’m like, “Sorry guys, too disabled, could you do it for me.” Quite literally that’s where-
EMMA- That’s the excuse I’ve used. And then I saw a blinkin’ Instagram video of a blinkin’ blind woman wrapping a present!
NIKKI- No, no, no, that’s when you come out with, “Everyone’s different. Just because we’re disabled, doesn’t mean we’re the same.” Use everything to avoid wrapping, it’s horrible.
EMMA- But can we stop these blind people coming out and doing stuff that I have told everybody for my whole life that it’s not easy for me to do.
NIKKI- Well, I’d say the same about wheelchair dancers, can you just back off a little bit, dial it down, because you are making ole pigeon shouldered Nikki Fox here look useless. I mean stop flipping in the chair! I’m pressing a lever. Please.
MUSIC- Theme music
NIKKI- It’s the show before Christmas, everyone. We are Access All from the 鶹, a podcast all about disability and mental health, but so much more. I’m Nikki Fox, in London’s West End. That sounds glitzy, doesn’t it?
EMMA- It does. I’m in a much more serious place, I’m in Edinburgh near where the Scottish Parliament sits in a little cosy studio.
NIKKI- Ooh la-la. This week Radio 3’s Hannah French is here. She’s going to be spinning the Christmas tunes on 鶹 Radio over the holidays. There is a disability link as well, of course there is, there always is, isn’t there?
EMMA- Of course there is.
NIKKI- So staying listening to that.
EMMA- Plus, there’s a new disability minister, but they’ve downgraded the role. What sort of difference will that make? I’ll be finding out.
NIKKI- And there’s more. Open up your 鶹 Sounds app or whatever podcast app you use, find Access All and click “subscribe” so we are in your phone forever.
EMMA- [Laughs]
NIKKI- And ever, ever, and ever, ever.
MUSIC- Music
TOM- I mean I think it’s been a really good year actually in terms of making progress on this really important agenda, and it’s really terrific to be here talking to you about the work we’re doing.
EMMA- That was the former Disability Minister, Tom Pursglove, on the podcast a few weeks ago. It’s a job that represents 16 million disabled people across the UK. But last week, the government announced that it was downgrading the job of minister for disabled people to a lower rank. Also, it’ll be absorbed into someone else’s brief and only be a part of their job. That someone is Mims Davies.
MIMS- All these figures are people’s livelihoods, their communities, and they’ve had a really-
EMMA- An online petition was set up within hours of the announcement to get it reinstated, and signatures were around about the 4,000 mark at time of recording on Monday morning. So what does this mean? I’ve got James Taylor, Director of Strategy at disability charity Scope, with me now. James, Scope are not happy. Can you sum up the situation for me?
JAMES- Cut back to the start of last week, the government said we will be announcing someone. There were then rumours that this role was either going to disappear or it was going to be merged with another role. Consequently on Friday the government announced that Mims Davies, who is already in the DWP as a Minister for Social Mobility, was also going to be taking on the disability health and work brief. So we now have someone who’s picked up the disability remit, however they’re also covering their existing remit of social mobility. And it’s a parliamentary undersecretary of state, which is a bit mealy mouthy and wordy, but it’s a role that’s below the minister level. So we’ve got a more junior role and a role that’s split between two areas of government and two areas of government policy.
We’re frustrated that the existing level hasn’t been maintained, and we’re frustrated that it took so long for the government to announce one in the first place.
EMMA- And is it important the difference in level? Is there a difference in how you get to deal with an undersecretary of state and how you get to deal with a minister of state, which is what Tom Pursglove was?
JAMES- I think day-to-day probably not. However, it does send a message that perhaps disabled people are not as important. The more pressing thing is that the role has been split in two, with Mims Davies being able to continue her existing portfolio whilst also taking on disability, health and work, which to us feels like disability is going to become even less of a priority for this government.
It’s really concerning when we had big changes to the work capability assessment announced last month in the Budget, we’ve got a huge economic inactivity challenge that the government wants to deal with, and of course we’ve got extra costs that are rising through the winter. So to have a role in government that’s possibly only doing this job half the time, is more concerning than probably what level they are.
EMMA- Were you surprised that the government did this?
JAMES- I’ve been at Scope for six years and I’ve worked with seven ministers for disabled people. It’s certainly not a role that I don’t think the government puts too much attention on, which is really disappointing considering we’re 16 million people strong, 25% of the UK population, that this such a lowly role. Ideally you’d want a beefed up secretary of state or something like that who sits across government and really looks to embed disability in every sort of policy and strategy and action that the government has. However, it isn’t.
So, I think we’re disappointed. We’d like to see the role reinstated to at least a minister level. Reinstated to purely a minister focusing on disability, health and work, rather than something else as well.
EMMA- Would you like it to actually come out of the DWP and be across all areas, is that what you’re saying?
JAMES- Well I think that’s an argument some people and some commentaries have made. I think in the long-term probably, because disability policy isn’t just about benefits, it isn’t just about welfare. As you’ve covered really eloquently on the podcast for the last couple of years, it’s about transport, it’s about civic life, it’s about being able to take part in society, being part of your local community, housing. That effectively you’d probably want a role sitting in the centre of government somewhere that’s really pushing government departments to think about disabled people and disability policy.
EMMA- James Taylor, Director of Strategy at Scope, thank you very much.
JINGLE- Music
EMMA- Let’s turn now to Caroline Nokes. She’s a Conservative MP and currently the Chair of the Women and Equalities Committee, so someone who has a lot to say about diversity in all its forms. I spoke with her earlier to get her thoughts on the downgrading of the role of minster for disabled people. Caroline, did you have any idea that this downgrading was happening?
CAROLINE- My committee asked Kemi Badenoch, who is the Minister for Women and Equalities, on I believe it was Wednesday afternoon what was happening with the position of minister for disabled people. There was no clear answer at that point. And on Thursday morning we were very concerned that it looked like there was going to be no minister at all specifically for disabled people, which caused a huge amount of concern.
I have to say, I’m pleased with the appointment of Mims Davies, I think she will be a fantastic champion, but it would have been helpful if there had been more clarity.
EMMA- But it has been downgraded from minister to undersecretary of state. Why do you think that’s happened?
CAROLINE- Well I suspect that that’s more to do with government finances than anything else and the need to the keep the ministerial salary budget within range. Mims is a very experienced minister, I think she’ll be great in the role. I also think that she should be a minister of state. But if that’s not going to happen, what we need to see if that the Government Equalities Office, that the DWP, and indeed every department across government, coordinates closely to making sure that disabled people’s lives get better.
EMMA- Do you think disabled people are going to lose out by the fact that the brief has been differently allocated to an undersecretary and as part of a portfolio, rather than someone’s whole portfolio?
CAROLINE- I don’t think disabled people are going to lose out, I think Mims is going to be working incredibly hard.
EMMA- Do you think disabled people aren’t being taken seriously? Like would this happen in another department, that it would be downgraded and given to a person as part of their brief rather than as their whole brief?
CAROLINE- It’s important to reflect that the minister for disabled people was a parliamentary undersecretary role from 1997 to 2010. Over the last 13 years it’s been very mixed. I don’t think we should be hung up on the job title, I think that that is broadly irrelevant whether they’re an MoS or a PUS. I think what matters is that you have somebody who is determined to speak up for disabled people. I think we’ve got that in Mims.
EMMA- So we’ve heard from a Tory MP about her thoughts on the government’s decision, but what do the opposition Labour Party, who crucially might soon be in power, think about what’s going on? I spoke to Vicky Foxcroft, Shadow Minister for Disabled People. Vicky Foxcroft, what was your reaction when you saw this unfold and you saw the final decision on minister for disabled people?
VICKY- I spent the whole week chasing the government to find out who they were going to be appointing as the minister. Then there were rumours and speculation that they weren’t going to be appointing anybody, they were just going to tag it on to somebody’s job. Eventually they did appoint somebody, and originally I felt quite relieved, but then I realised they’d actually demoted the role. They’ve done this before in the past and it seems that they’re trying to do it again, and so we just need to keep the pressure on them to say this is a really important role and we are not happy with them seeking to go and demote it. It should be a minister of state, not the parliamentary undersecretary.
EMMA- But Caroline Nokes has just told me that it doesn’t really matter whether the role is a minister of state or an undersecretary. What’s your take on that?
VICKY- Well speak to disabled people, what do they think? Do they think that it doesn’t matter that the role’s deemed to be a less important role? I don’t think that that is the case, no.
EMMA- But what makes it lesser in practical terms? Like in terms of being in government and being an undersecretary or a minister of state what makes it a lesser? Will less get done when it’s in this role than in a minister of state?
VICKY- It’s about the authority, isn’t it, and where the position is deemed to be. The minister of state makes it the second in the DWP team, and the parliamentary undersecretary doesn’t. I’m not doubting that the minister will work hard, but it’s about where it’s seen in terms of the prioritisation and where it’s seen in terms of the status.
EMMA- What would Labour do if you were in government, would you have a minister for disabled people, minister of state?
VICKY- Yeah, of course. Of course.
EMMA- Alright Vicky Foxcroft, thank you so much for speaking to me. We asked the government about the remit of the new disability minister and they said, “Ministerial portfolios will be confirmed in the usual way in due course.” By which, they mean that it’ll be posted on a particular website. “The government will continue its work to support and champion disabled people, as evidenced by our strong track record and our multi-billion pound support plans announced at the Autumn Statement, to help millions more disabled people get into and stay in work.”
JINGLE- Access All
EMMA- You know this earlier in the week podcast business?
NIKKI- Yeah.
EMMA- I’ve been waking up really early the day of the podcast. I was awake at 4.00 am this morning.
NIKKI- 4.00 am?
EMMA- And I get up at six and my waking cycle, do you know when you wake up in the middle of the night I always stay awake for the same rough amount of time, and it’s usually two hours, so if I wake up at 4.00 am that’s it, if I’m getting up at six I might as well just forget it.
NIKKI- So what did you do?
EMMA- I lay there ‘til 6.00 am, obviously.
NIKKI- Did you?
EMMA- Well I did worrying and planning and making lists, and you know listening to other people sleep.
NIKKI- Was your hubby asleep?
EMMA- Yeah, I think so. He says he was awake, but the sounds he was making makes me think he was asleep.
NIKKI- I love that when you’re awake and you say, “Did you sleep?”, “No, I didn’t sleep all night,” but they were snoring.
EMMA- Yeah! [Laughs] What about you, did you sleep last night?
NIKKI- Ahh, I don’t sleep, it’s not my friend at the moment, Em. I’ve always been able to sleep, I’m known for sitting down at the end of the day and if I shut my eyes for more than two seconds I’ll be out like a light.
EMMA- Really?
NIKKI- Snoring like a wild animal. Yeah, like a light.
EMMA- Even sitting, so not even in bed?
NIKKI- No, no. I’m going to tell you something that I really shouldn’t admit. You know I do Watchdog, don’t you?
EMMA- Yes.
NIKKI- We film Watchdog on a Friday when I’m not on news, and we did a story not long ago and during an interview with an expert I fell asleep for one minute and 38 seconds.
EMMA- Were you with the person?
NIKKI- He was right in front of me.
EMMA- And how do you know how long you slept for?
NIKKI- I was sat on my scooter. Because they filmed it, the camera was on my face.
EMMA- Oh my god!
NIKKI- They watched it back and that’s how long I was out for.
EMMA- And he or they just spoke?
NIKKI- Carried on and gave his answer. Apparently the producer/ director, lovely guy, he said, “You asked a question that made absolutely no sense because you were just about to fall asleep, and then he gave you his answer and spoke for ages, and you were out through the whole thing.”
EMMA- That sounds really serious that you would fall asleep in the middle of an interview, like you’re obviously not sleeping.
NIKKI- I was sat down. Well the thing is I’ve always known, Ems, I’ve got sleep apnoea. I think I probably bored you with it.
EMMA- That’s where you hold your breath in the night?
NIKKI- Yeah, that’s right. And I thought, ‘I better get something done because you can’t be falling asleep, Foxy, during an interview, it’s just not professional. Get your appointment sorted.’ So I got a referral, did an overnight sleep study, and then went to the appointment not long ago thinking it’ll just be a little catch-up, and I was there for quite a few hours and they said that I have chronic obstructive sleep apnoea and I stop breathing for about 70-80 times an hour during the night. An hour!
EMMA- Basically they should have really said how many times you breathed in an hour because that would have been maybe less or whatever!
NIKKI- I’ve always thought yes I am tired during the day, but I always thought I sleep really well because I do sleep really well, but I’ve always had a headache every morning. All the signs, you know, out like a light in the evening, that kind of stuff.
EMMA- So you fall asleep really quick.
NIKKI- Oh yeah.
EMMA- I fall asleep really quick as well, and I’m such an anxious person that I think anxiety is often linked with not sleeping. I’ve found out from this podcast, I think, that your brain’s so active during the day...
NIKKI- You actually tire yourself out.
EMMA- ... that you tire yourself out so much that you fall asleep straightaway.
NIKKI- Yeah.
EMMA- Basically you’ve been sleeping but not resting.
NIKKI- Yeah, that’s it, exactly. And not getting the right kind of sleep. I probably should have got it sorted a bit sooner. Anyway, they gave me a CPAP machine. I’m sure maybe some of our listeners have got a CPAP, and if you have, anyone if you’ve got any tips please let me know, because I’m trying to use it but I’m not getting much sleep at nighttime, because it’s a mask that goes over your nose and your mouth. I’m not a claustrophobic person but it makes me feel a little claustrophobic, and it’s got a big tube that comes out of your head. It’s just quite tricky to sleep in.
I’m sort of averaging between maybe three and five hours. I did get a record six actually. Because it tells you when you stop the machine how many hours you’ve had.
EMMA- I spoke to you the day you had a six, you were like top of the world.
NIKKI- You said I sounded really perky, didn’t you?
EMMA- I did. You just sounded like a different person. I mean you’re always perky, but you sounded particularly ...
NIKKI- Perky.
EMMA- ... perky. Perky!
NIKKI- I got five hours last night so it wasn’t a record six but it wasn’t bad. The mask is really sore, because if you don’t do it tight enough the air escapes, and it’s like you get a sad face on the machine “it’s not good enough,” so you tie it tighter and then it hurts your face. But yeah.
EMMA- I could talk to you all day about your sleep.
NIKKI- If we were married, you would be glad that I have this CPAP, Ems, because it muffles my snoring. Because before the CPAP I snored like a wild animal.
EMMA- So now do you just sound like you’re snoring into a cup?
NIKKI- I don’t actually snore, I don’t make the noise now. Snoring into a cup, that’s a great description!
EMMA- It’s so tight to your face that it doesn’t sort of-
NIKKI- Yeah. And it’s pumping the oxygen down, so it’s opening up the airways I think, Ems.
EMMA- What happens if you do stop breathing, what does the machine do?
NIKKI- It knows that you’ve stopped breathing because it’s very responsive, and it basically wallops a load of air down you.
EMMA- Ooof.
NIKKI- I know! It’s like you’re being waterboarded but with air.
EMMA- [Laughs] Is it a weird... does it-?
NIKKI- It wakes you up.
EMMA- What’s the point in that? It’s supposed to keep you asleep.
NIKKI- I know, exactly. Exactly. This is why I’ve called it a rude word, which I won’t say, but I’m sure you listeners can guess how I’ve changed CPAP, I’ve just double C’d it.
EMMA- I’m trying to think of something that’s not a rude word.
NIKKI- Yeah.
EMMA- I don’t know, a CTRAP?
NIKKI- It’s not my friend at the moment. Yeah, it does, it like wallops air down you and you’re like [breathes quickly].
EMMA- A bit scary. Do you have nightmares now and little flashbacks?
NIKKI- I haven’t dreamt since I’ve been using it actually.
EMMA- Really?
NIKKI- No.
EMMA- The dreams are going to be really weird, I’d say, if you do start dreaming.
NIKKI- I’ve not had one. Is this like what normal sleep is?
EMMA- Oh my god, this is one of the top questions for blind people is do you see in your dreams? Do you dream on your CPAP?
NIKKI- Why would I? Where would you? What? Hey?
EMMA- Because you said you haven’t dreamed with your CPAP on.
NIKKI- But you said one of the top questions for blind people. Is that what you ask other people?
EMMA- No, that’s what other people ask me, do you see in your dreams?
NIKKI- Why do they ask you that?
EMMA- Because the taxi drivers are like people who don’t know me and they just think it’s a fun question to ask.
NIKKI- I just presume that you would.
EMMA- Are your children blind? Can you see in your dreams?
NIKKI- Oh, okay.
EMMA- Did you have children to look after you? Have you always been blind?
NIKKI- We know you did, Ems, I mean come on! [Laughs]
EMMA- [Laughs] Is there nothing they can do for you? There’s a lot of stuff out there nowadays. These are just the questions, so I just wondered if people dream on their CPAP?
NIKKI- I haven’t had one yet.
EMMA- Could you let us know, 0330 1239480, accessall@bbc.co.uk
NIKKI- Yeah, tell me what to expect. Will I ever dream again? I used to like my dreams because I used to create whole dance routines in my dreams and everything. I mean I’m disabled, I’d like to dream if that’s alright, people.
JINGLE- Access All
MUSIC- Christmas music
EMMA- Music is one of the key things, isn’t it, that makes us feel festive, and one of the people with the responsibility of delivering that music to us this Christmas and New Year, is Doctor Hannah French. Hannah presents the New Year’s Day breakfast programme on 鶹 Radio 3, which is a classical station, and this year we’ll have her on Christmas Day morning as well. It’s absolutely lovely to have Doctor Hannah French here with me for a chat. Hi, Hannah.
HANNAH- Hi. Thanks for having me.
EMMA- Oh, no worries. Is it a big responsibility bringing music to people on these very festive mornings?
HANNAH- It is. It feels like a really personal thing, doesn’t it? I’ve not done Christmas Day before and I’m really looking forward to that. I suspect on Christmas Day morning, if people are listening to the radio, they’re chopping vegetables or hiding from their children or other family members just having a little moment, maybe they’re in the bathroom just prolonging their shower for two minutes. [Laughs] It’s just a real kind of point of creating a mood for the morning, a soundtrack for the morning. Yeah, it’s a real privilege to spend it with people, isn’t it, on Christmas Day.
EMMA- And is it live?
HANNAH- Yeah.
EMMA- Wow!
HANNAH- I said I’d only do it if Santa was coming to Broadcasting House, so I’ve got high hopes.
EMMA- Oh wow, I hope he does. I wonder where he’d come in? The big revolving door maybe? I don’t know. Oh, that’s lovely. So you’ll be one of the only people in new Broadcasting House, our big office in central London, on Christmas Day.
HANNAH- That’s right. I’m hoping for a really clear run in, only reindeer on the roads.
EMMA- You have a Doctor of Music and you’re interested in early music, and you’re flautist as well. For someone like me who’s not well versed in classical music, what does all of that mean?
HANNAH- Yeah, I am a Doctor of Music. I don’t often talk about that to be honest. But I did at one point study very hard. I specialised in the Proms, what’s now the 鶹 Proms, but with their founder conductor, Henry Wood, and how he introduced the music of Johann Sebastian Bach to England, to London, and then actually around the country as well. So we’re talking about things like the Brandenburg Concertos and the Orchestral suites.
MUSIC- Classical Music
HANNAH- He was really important in spreading the word and making Bach seem like a popular composer. Because if you’ve heard of Johann Sebastian Bach, you’ve probably got an image in your mind of an old man in a big wig, and perhaps you know he was an organist, and he used to have a reputation for having very dry, dusty, complicated music. But actually it couldn’t be further away from the truth. I do do that. What else was I supposed to do? Play the flute.
EMMA- Did you play the flute at one point maybe?
HANNAH- I did. I was a professional flautist for many years. Yeah, I studied at the Royal Academy of Music as a post-grad and I loved playing the flute. I specialised in reproductions of 18th Century instruments, so wooden flutes.
EMMA- Right, wow!
HANNAH- Yeah.
EMMA- Ooh, exciting. So you got to play all the sort of odd flutes and different ones that people aren’t used to.
HANNAH- Yes, exactly. [Laughs] Exactly that. They have a different sound and a sound that I really love, it’s a kind of wooden, as you’d expect, but a real mellow sound.
MUSIC- Flute
HANNAH- They’re almost folky in some ways, the keys are not quite like modern flutes and the brilliance of a modern flute, but you find all sorts of really slinky moves within them. And I love doing that, and I did that for many years.
EMMA- I love it, slinky moves!
HANNAH- [Laughs] The baroque flute, the slinky mover.
EMMA- You’re so, so, so passionate, but you don’t play the flute anymore. I think in radio, because it’s all about voice and personality, a lot of people probably won’t know or wouldn’t have known until you made your documentary, which we’ll talk about in a minute, but won’t know that you are a disabled person and a wheelchair user and have pain.
HANNAH- That’s right. I started using a wheelchair in 2009, so it’s not a new thing and I’m very, very used to it. My wheels are my wings, which I think probably lots of wheelchair users say. But yeah, I tried to carry on playing the flute from my chair, and to start with it wasn’t a clean break, I didn’t have an accident, there wasn’t a real strict cut-off point, and so I tried to carry on playing and using stools and crutches and makeshift solutions.
Unfortunately the pain that I have, I have chronic pain in my left hip. I should probably say I’ve got Ehlers-Danlos syndrome, which is a collagen deficiency, and it means that I dislocate very easily. But not only dislocating, because that does happen, but also a thing called subluxing, so my joints will move out of range and then they will partially come out and then cramp, and then be held slightly out of joint, and that’s excruciatingly painful. That happens to my whole body from my jaw down to my ankles and my toes. My left hip was really badly affected, and I had a number of operations that didn’t really work because they were before my diagnosis, and they can’t be reversed.
EMMA- Oh, so you were having surgery unsuitable for someone with Ehlers-Danlos syndrome.
HANNAH- That’s it. Yeah, we couldn’t go back and stitch things back together again. I was left with a lot of pain, and I have dealt with both well and badly over the years. A casualty of that was my flute playing and I’ve had to let that go. Funnily enough, once I had, I mean as I say I tried a number of times, but there were things that... I mean I’ve got some great horror stories about being pushed across fields in wheelbarrows and broken wheelchairs in airports.
EMMA- You used to do physio in a double bass case.
HANNAH- I did do it in a double bass case once. [Laughs] A very, very kind double bassist after a recording session said, “Why don’t you just get in the double bass case.” It was a soft case, it wasn’t a hard case, and they were doing Alexander Technique with me and people were helping to get me straight down.
EMMA- So you really, really tried. I never really think of the flute and being a flautist as massively physical in terms of needing to stand up all the time. Could you not play the flute sitting down?
HANNAH- Well you can, and you can play it from a wheelchair. I suspect many people do. But it’s all on the cross, is the flute, you imagine it out on the side. When you’re playing, if you’re just a soloist at the front of the orchestra looking out, that would be fine, but usually in an orchestra you’re looking round other people or there’s pillars in a church, all this kind of stuff, and so it puts you at some awkward angles, which obviously you try to avoid anyway.
But as time went on, the more I breathed properly, the worse it got as well, and now when I breathe really well to play the flute properly and use my diaphragm, it catches, and the chronic pain that I have, and I can deal with in many ways in my hip, just ramps up and it gets way worse, and it hurts to breathe, it hurts to play.
EMMA- You had to call it a day at some point. Do you still have your flutes?
HANNAH- I do.
EMMA- Do you ever take them out?
HANNAH- I get them out, and I think, ‘Oh, maybe it wouldn’t hurt anymore, maybe I could just,’ and then I play for a bit and think, ‘Oh, this sounds awful,’ because you know it’s like a muscle that’s not been exercised. Then I play a bit longer and think, ‘Oh, do you know what, I could still do this,’ and then the pain starts and then it ramps up, and then I think, ‘I’ll put it away.’ Then it’s really bad for the next kind of six hours or so and I think, ‘Why did I do that? Why did I?’ But you’re right, every now and again I kind of test it, I poke the bruise, just to see if I could.
EMMA- Yeah, we all do stuff. We all do that about things, don’t we?
HANNAH- Yeah.
EMMA- Luckily I suppose in some ways you have such a passion for musical history, for composers, for their lives, which has led you to being such a prominent presenter on 鶹 Radio 3. You made a documentary for Radio 3 after a long time of living with pain and after a long time of being a presenter on Radio 3, called is it The Sound of my Pain?
HANNAH- Do you know what, that’s what it was originally called, and then we changed it to The Silence of My Pain.
EMMA- The Silence of My Pain. So I’ll say it again.
HANNAH- No, no please don’t, that’s exactly right.
EMMA- I’ll leave it, okay. But that’s so interesting, because The Sound of My Pain and The Silence of My Pain, that sounds like two very different things.
HANNAH- Two really different shows. And I set out to make one, and I ended up making the other.
EMMA- Love it. They’re the best, aren’t they?
HANNAH- I’ve been in pain rehab and all sorts of medical situations where clinicians and consultants have said to me, “You should use music to help you, and you should use it for not only your mental health but for CBT exercises, and you should have playlists, you’ve got this amazing resource at your fingertips.” And it fills me with absolute horror, because I think I have a weird relationship with music because I had to stop playing the flute. I think everybody has music that they associate with perhaps the happiest times of their lives and their deepest grief, and associations with places and people, and that’s fine, but I can’t bear the thought that I would associate certain pieces of music with pain.
EMMA- So tell me, a big part of your presenting is in live performances. We talk a lot on this podcast about access to venues. As an audience member and as a musician what’s your take on that, have you found them improved, the access to the performance spaces that you go to?
HANNAH- I go to lots of very old venues because I present the Early Music Show, so we go to National Trust houses and really old venues. I think when I get to those I have such low expectations because the Tudors didn’t really think about access and that kind of stuff, that I’m often really, really pleasantly surprised how we manage to navigate our way around. It’s not perfect and you can’t always get to everything, but yeah I’d say in old venues that is a thing. I think my patience runs out with new venues, because I have high expectations that I’m going to be able to get around.
I think the other thing with venues is that it’s quite binary, you’re either a musician on stage, or you’re an audience member in the auditorium, and I think that access has massively improved for audiences, and in lots of venues actually it’s pretty good to get on stage. Whether you can get to a suitable dressing room is a different matter. The issue that I often have is that if you’re working in production you often have to get between the stage and the auditorium.
I was at a very new concert hall recently and I could get onto the stage brilliantly, there was a dressing room that was fantastic, and I could get into the auditorium, but to get from the stage to the auditorium to then hear what was going on when I’d finished an interview and I wanted to hear the music, I had to go outside to find somebody with a specific key for a specific lift and round the houses and back round again, and it was really, really clunky.
EMMA- You’re doing these Christmas and New Year broadcasts so I have to ask you, Hannah, what are your favourite festive pieces, what’s your favourite Christmas music?
HANNAH- Well, there are lots and lots and lots and lots of things. I have a carol which I absolutely adore, and it’s called A Child is Born in Bethlehem.
MUSIC- Carol extract
HANNAH- It’s an old Danish carol in an arrangement by a Norwegian called Ørjan Matre, and it’s just Christmas for me.
EMMA- Hannah, where can we hear you and when over Christmas and New Year?
HANNAH- I have a really lovely Early Music Show on Christmas Eve from my kitchen, from here, and that’s medieval carols and baroque bangers, and the history of mince pies, yule log, fish pie and why we eat what we do on Christmas Eve. My producers really got involved, especially with the food side of things. It’s a real soundtrack to Christmas Eve.
EMMA- Amazing. Hannah French, thank you so much for joining me, and good luck with all your beautiful programming over Christmas and New Year.
HANNAH- Thank you so much.
MUSIC- Music
NIKKI- That was the lovely, lovely Hannah French. I was sad I wasn’t there for that interview. You did a cracking job, Emma.
EMMA- Thank you. I did miss you.
NIKKI- Now be sure to tune in to her traditional festive music and keep her company on Christmas Day and on New Year’s Day. She’s on 鶹 Radio 3 on FM and digital.
EMMA- Okay, try this now. Are you ready?
NIKKI- Hmmm, hmm.
EMMA- Turn to your smart speaker if you have one.
NIKKI- I don’t.
EMMA- Okay. Hail her with your little wake up word like “Alexa” and they say, “Ask 鶹 Sounds for Access All,” and the latest episode will magically start playing.
NIKKI- See, I don’t know whether that would work of me because I do that “hey Siri” and it never works.
EMMA- Oh yeah, Siri can be a bit on and off, a bit hot and cold.
NIKKI- Don’t let that put you off, listeners, do it. And in the Christmas week on December 27th you’re going to be able to download our “Best of 2023” edition, and there’s some great stuff on there. Remember Melanie and Chase from Australia, and we had Victoria Canal.
EMMA- We had Jack Thorne.
NIKKI- Ah, lovely Jack Thorne. We’ve had some cracking guests actually.
EMMA- Really enjoyed those clips listening back, because we did have really interesting, wonderful people.
NIKKI- We’ve had some goodies. And Rosie Jones as well. We’ve also got some very exciting plans for 2024. We are going to be back full-time on the second week of January, but until then people, Merry Christmas or happy holidays or whatever it is you do. If it’s just like you stay at home, eat lots of food and don’t wash your hair, have a good one from us to you. Bye.
EMMA- Bye.
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Access All: Disability News and Mental Health
Weekly podcast about mental health, wellbeing and disabled people.