³ÉÈËÂÛ̳

NIKKI- You know those nightmares that you have where you’re in an office and you’re naked? 

EMMA- Yeah.

NIKKI- Well, I’ve had a recurring nightmare that one day I will have to go on a red carpet and something will happen. Well, I actually had to go on a red carpet for the NTAs, which is the National Television Awards. And it was on Wednesday night, and I wore a big puffy dress that looked like a hydrangea, or one of those dolls that go over toilet rolls, if you will. Can you visualise that?

EMMA- Well, I don’t think that’s doing yourself justice because I’ve heard a lot of good things about this dress. 

NIKKI- No, I loved it, don’t get me wrong, I loved it. I’m digging it. I’m digging the whole kind of toilet roll thing. I did say this to Linda Robson on the red carpet. You know Linda from Birds of a Feather?

EMMA- Yes.

NIKKI- [Sing] What will I do?

EMMA- Yes, Tracy. 

NIKKI- Yeah. She said, ‘Nikki, don’t do yourself down’. I nearly fell off my scooter because, like, how does she know my name’s Nikki? It’s Linda. But she did. And then she told me off for doing myself down. She went, ‘You look beautiful’. And I was like, well that’s it, my night is made, joosh, this is it, Linda. 

EMMA- I’d imagine Linda listens to Access All. I’d imagine that’s why she knows your name. 

NIKKI- Potentially. 

EMMA- So, did nothing interesting happen on the red carpet?

NIKKI- Okay yeah. So, we were told that we would have to pull up in our car. Now, our car was a WAV, okay.

EMMA- Wheelchair accessible vehicle.

NIKKI- A wheelchair accessible vehicle. So, while everyone was turning up in their, I don’t know, fancy-pants cars, we had the WAV. Beautiful WAV, we’re very lucky to have one, but it’s my sister’s. But you have to pull up actually on the red carpet where all the papps are. Now, we were in this WAV, Alice was driving, Libby was going to have to crawl over me to get out, get the scooter out, assemble the scooter, bring the scooter round, I was going to have get up, get into the scooter, all in front of the papps. So, I was obviously terrified about doing this. So, I managed to convince someone to let me go into a loading bay first. 

EMMA- Ah, you cheated.

NIKKI- Relief, relief. I got into the loading bay, Libby assembled the scooter, we stood up, Alice went to very kindly pull my dress down, my left booby came straight out of the dress. 

EMMA- Whoop!

NIKKI- So, thankfully that happened in the loading bay and not on the red carpet because my nightmare would have come true. 

MUSIC- Theme tune.

NIKKI- It’s the podcast you had no idea you wanted to hear, it’s Access All from the ³ÉÈËÂÛ̳. We’re here every week chatting all things disability and mental health, sometimes with a sprinkling of juju, as you’ve just heard. I’m Nikki Fox recording from Broadcasting House in London. 

EMMA- And I’m Emma Tracey at the Tun, which is the ³ÉÈËÂÛ̳’s headquarters in Edinburgh. 

NIKKI- Now, we’ve gone a bit rogue these last few weeks, what with Edinburgh and all that, but we are back to our regular timetable. 

EMMA- Timetables remind me of school. And speaking of school, the difficulties some children have fitting in and learning can be overwhelming. New ³ÉÈËÂÛ̳ Two series, Helping Our Teens, shows this warts and all. We’ll be joined by the show’s behavioural expert, Marie Gentles, and student Jayliyah and her mum Gemma. 

NIKKI- Also coming up, how do you sack your personal assistant? Brutal. Journalist Lucy Webster spills the beans on how she does it. Plus she talks sexism and ableism and how the two collide. That reminds me of a song, Ems [sings] when we collide we come together. 

EMMA- I was thinking the Def Leppard number, When Love and Hate Collide. 

NIKKI- Ooh okay, angry. Carry on. 

EMMA- [Laughs] spread the word about this show so that more people who could benefit from listening to it can find it. We’re Access All and we’re on ³ÉÈËÂÛ̳ Sounds or wherever you get your podcasts. 

NIKKI- Child mental health problems are on the rise. Record numbers have been missing from school, and concerns have been raised about declining standards of behaviour in the classroom. A brand new ³ÉÈËÂÛ̳ TV series called Helping Our Teens has spent time filming inside Beacon Hill School in Dudley in the West Midlands. There leading UK child behaviour expert, Marie Gentles OBE, has been helping students at risk of permanent exclusion, or those who need emotional support. And Marie is with us now. Hello Marie.

MARIE- Hello, thank you for having me. 

NIKKI- Oh, it’s an absolute pleasure. I’ve watched the first episode. I absolutely love it. I’ve fallen in love with all of you, so bear with me, I get a little bit fan girly [laughter]. But Marie, one of the young people you work with is Jayliyah who has a diagnosis of ADHD and ODD, which is oppositional defiance disorder. That was one I’d not heard of actually. 

MARIE- People with ODD can struggle to manage feelings of frustration or anger. 

[Clip]

JAYLIYAH- It’s kind of confusing, sometimes overwhelming, exhausting because when you’re out and you act a certain way people look at you and they judge you and they think what is she doing. But that’s just me being me. A lot of people think sometimes I’m aggressive. I’m not aggressive. Once you get to know me deep down I’m nothing like that, nothing like that. 

[End of clip]

NIKKI- Now, Jayliyah joined Beacon Hill having been permanently excluded from two other schools, but she’s here with us now, and I’m very excited about that, alongside her mum Gemma. Hello guys. 

JAYLIYAH- Hi.

GEMMA- Hello.

NIKKI- Jayliyah, with the amazing hair, as listeners will see when they watch the documentary. Our listeners, loads of our listeners will have had or will be having similar experiences to yours at school so they will get it. But I just wanted to ask you how was school going for you before Marie arrived? 

JAYLIYAH- It wasn’t going good, to be fair. I kept getting suspended, like near enough every other week, and the teachers weren’t listening as much. 

NIKKI- How did you find it all? Did you feel frustrated? 

JAYLIYAH- Yeah, I was frustrated, and I kept getting overwhelmed. 

NIKKI- It’s a difficult time school, isn’t it, and I suppose it’s how you manage those frustrations. And we can see that in the documentary that you were struggling. But then when Marie came on it’s like you started to change, didn’t you? What was it that Marie was offering you that helped so much? 

JAYLIYAH- She kept giving me a lot of good advice and she kept speaking to the teachers about what they’d need to do, and then they started to listen to her and me. And now it’s going good. 

EMMA- Marie, we heard from Jayliyah, what’s your take on it? What did you guys do together? 

MARIE- So, when I first met Jayliyah I think the first thing I did was have a different perspective of her. So, I was immediately about to see what a great girl she is, and I was able to see that separate from her behaviour. Which is quite hard for other people to do, and it is part of my job. But I knew that some of the behaviours that were being presented were undesirable, but I could see that she as a person was very articulate, she had goals and dreams, she was able to express herself. She was great as a young person, so that was my first impressions. So, I knew that that’s what I needed to do in terms of pulling that out and getting others to see that side of her. 

NIKKI- What were some of the behaviours, if you don’t mind me asking, Marie and Jayliyah? What were these behaviours that you were exhibiting that weren’t doing you any good at the time? 

MARIE- Jayliyah, do you want to answer that or do you want me to?

NIKKI- It’s hard, it’s really hard to talk about. 

MARIE- That’s okay. Well, I think that what I think is really important for everyone to understand is that when a young person feels overwhelmed, when their needs haven’t fully been met – and that’s a really key one – when their needs haven’t been met, then that young person can feel completely overwhelmed and then unable to manage themselves or maybe needs extra support or additional support for others to understand why they’re presenting as they do. And then once we can understand the whys, once we can understand that this isn’t a young person who’s just being rude, for example – that can happen, young people sometimes are just rude – but in this instance it was well actually I have these needs, and this is what goes on for me internally, when I feel overwhelmed that takes over my entire body, my mind, I might say something that I shouldn’t say, I might have a certain facial expression, whatever that may be, and that can be taken and perceived in certain ways, which is totally understandable. For them to learn, for their behaviour to improve, for them to be able to receive support from other people, they’ve got to feel emotionally safe in the school; and that’s done through the relationships with the adults in the school. So, that’s one way. 

And then in addition to that, once we understand what the needs are, so for Jayliyah, like I said she’s very articulate, so she was able to describe to me that maybe she’s in a lesson and if she feels that she can’t access the work or whatever that may be she can feel it in her body first. And then what happens is she can be quite impulsive, so she feels that feeling and then it just resorts into maybe sometimes undesirable behaviours. So, when we understand that we can go and take a couple of steps back and say, okay what thoughts and feelings led to that behaviour, led to that action, and what can we do to support Jayliyah. Well, if you’re feeling a bit anxious or a bit overwhelmed what can you do to first of all identify that feeling and then find something, a different outlet. So, instead of maybe walking off or whatever, what else can you do instead? Because those feelings are still going to come, you can’t get rid of the feeling, but you can support them to manage that in a different way. 

NIKKI- Jayliyah what was it like for you to have that person that you can be so open with and trust? 

JAYLIYAH- It feels good because now I have someone that I can talk to and go to if I’m feeling some type of way. 

NIKKI- And does that make a big difference? 

JAYLIYAH- Yes, it’s made a huge difference. 

EMMA- Gemma, I know a lot of parents will feel your pain when they see you getting frustrated with the situation early on in the documentary series. So, frustrated with meetings and having to leave work and getting taxis. What effect was the situation having on you and the family?

GEMMA- Oh, when she does get called it’s a bit of an impact because you have to come out of work, or if I’ve got days off and you’re trying to do the housework. Especially when Jay, our youngest, when she was a baby, baby, it was really difficult having to put her into the pram, go to schools, find… Sometimes it just puts a toll. But because my child’s education is so important to us as a family and her needs to be met I have to be there and I have to let the teachers understand and try and make them understand what her needs are and what we need to go forward. So, something that could be frustrating, especially when you didn’t feel like you were being heard. So, Marie coming in and actually saying what I’ve been saying for so many years it was like oh, thank goodness, someone knows it, someone understands! I’ve got back-up. 

EMMA- That’s really interesting. And Marie, do you find that quite a lot in your work? 

MARIE- Yeah, I do actually, I do. And I always say the parents know the child best, always. But of course whilst schools and home should be working together, they’re still very, very different environments. So, I quite enjoy that part of my job in terms of if I can bring people together, if I can bring the two together, if the parent feels heard and the school feels like they’ve got a way to move forward, because this is very, very, very common. 

NIKKI- I was going to ask you Gemma, obviously I know Jayliyah is still continuing her work with Marie and all of that, but how do you feel watching her and seeing her change and just become a bit happier? How do you feel as a mum? 

GEMMA- Do you know what, I couldn’t be so proud of Jayliyah. 

NIKKI- Aw.

GEMMA- Honestly, I get really emotional. Because she set a goal, which was to be in school for a year, and she’s over-excelled that. 

EMMA- Yay.

GEMMA- And now she wants to become a social worker and she wants to work with children like herself to help parents and members of staff and hierarchies to understand the simplicity or the complexity of her disability and others as well. So, she’s really got her head focused on – what’s the course you do? 

JAYLIYAH- Health and social. 

GEMMA- Health and social. So, she’s actually been predicted an A Star for that. 

NIKKI- Jayliyah that’s incredible. 

GEMMA- Yeah, we’re really chuffed. 

NIKKI- And Marie, I just wanted to quickly pick up with you, because you do work with other children on the series, and one of them is Taylor who I just completely fell in love with. Now, Taylor had low mood, didn’t she?

MARIE- Yeah. 

NIKKI- But real bad, bad periods of low mood. What strategies do you give people with depression and anxiety like Taylor which might help some of our listeners? 

MARIE- One of the first things that I did with Taylor, the family and the school is talk about multiagency support. I have to say that because with a situation like Taylor’s what we shouldn’t be doing is trying to have someone like me come in solely to work with them, so I have to say that. 

NIKKI- So, when you say multidisciplinary you mean different teams like, I don’t know, CAMHS or…?

MARIE- Yes, correct. 

NIKKI- Which is child mental health, yeah. 

MARIE- Absolutely. So, assessment, referrals, all that kind of stuff was being done or had been done. And so in the meantime, so to speak, one of the things I was working on with Taylor and her mum was to support them to understand what the journey or the progress journey looks like, and for Taylor to be able to not be completely consumed by her feelings and to be able to try and find some attachment within her life where things were going a little bit better, and to try and be really present in those moments. Because what was happening was in the moments where she felt really down she was scrambling around trying to find a bit of light. So, I was talking to her and mum about when you’re feeling a little bit better be very, very present in those moments and it will help you in those other moments, amongst other things obviously as well. But things like that it sounds small but it’s so big in terms of the impact it can have for these young people. 

NIKKI- How’s she feeling now, Taylor? 

MARIE- She’s fantastic. She still has down days, and that’s to be expected and that was all part of the work to help her understand that this is what the journey looks like. We cannot aim for perfection, there’s no such thing; it’s progression, not perfection. And we cannot aim to be happy all the time; no one feels happy all the time [laughs]. 

EMMA- Marie, what are your hopes for this series? What are you hoping that it will achieve, or what conversations are you hoping it will start? 

MARIE- I’m hoping that it will start conversations around different perceptions and understanding behaviour as a communication of need. So, understanding that young people’s needs will be presented in different ways, and there isn’t a quick fix. And we have to take it day by day. And for some young people that can look like really big leaps of success, but it’s still a process, and for others it can look like a step back and then a step forward. But that’s what progress looks like, and we mustn’t give up on these young people. They need us. They’re crying out. Even if they’re pushing us away [laughs] they’re still crying out for our support. 

EMMA- Jayliyah what do you hope it does for young people like you watching it?

JAYLIYAH- I hope that people just look at it and think I was like her, and then they can try being like how I am now and get the help and support that I had. 

NIKKI- Thank you so much Marie. Thank you Jayliyah, thank you Gemma. Jayliyah I hope this doesn’t sound really naff coming from an old bird, but I felt really proud, I feel really proud of you. 

JAYLIYAH- Thank you. 

NIKKI- It’s like I feel so impressed with that documentary. It does sound naff, I know, I don’t even know you. But well done and carry on just smashing it. 

JAYLIYAH- Thank you. 

NIKKI- Now, the documentary Helping Our Teens is going to be on ³ÉÈËÂÛ̳ Two Thursdays at 9pm, or you can catch it afterwards on iPlayer. And I hugely recommend everyone watch it because I was gripped. 

EMMA- And if you want to share your thoughts on disability and school exclusion you can email us accessall@bbc.co.uk or find us on X formerly known as Twitter. 

NIKKI- The government made a big announcement around benefit reforms this week, and we wanted to break it down so it made sense to us and our listeners. Now, Emma, we’ve been looking into this, haven’t we, but I’m going to get you to break it down. What have you found, Emma Tracey? 

EMMA- Well, basically the headline here is that the Work and Pensions secretary, Mel Stride, has outlined a number of benefit reforms to help people to find work and to reduce government spending:

MEL- What we’re really looking at is to really adjust to the way over the last decade actually, which is the last time we looked at making changes to the Work Capability Assessment, that was in 2011, how the world of work has changed. People are working from home, and employers having a much more flexible attitude, the things that government is doing to help disabled people go into work. Well, of course we’ve had huge success over recent years. So, it’s really looking at the Work Capability Assessment in order to assess people with those changes in mind. 

EMMA- One way which has been suggested is to give some people who currently aren’t working, such as certain people with mental health difficulties, more support so that they can come off benefits and work from home. But what all this actually means is that the government has launched a consultation on proposed changes to the Work Capability Assessment. Now, that’s the test which establishes how disability and illness affects your ability to work if you try to claim certain work-related benefits. But many disability charities say that the changes could force disable people into work when they’re not well enough to do so. Here's what Anna Morrell from Disability Rights UK had to say about it: 

ANNA- We’ve got serious concerns about this consultation because it looks less like helping disabled people into work than a really cynical attempt to impose conditionality, introduce sanctions and reduce benefit payments for disabled people who can’t work. If the government wants to get people into work why is it not putting things in place to encourage people into work using a carrot approach rather than a stick approach? 

NIKKI- Now, all of this can seem quite confusing. So, what are the proposals, Emma?

EMMA- The proposals include changing or even removing support if you’re mobility impaired, incontinent or have social difficulties. So, if you’re someone who has mobility issues and previously got points because you could walk less than 50m unaided the proposal could see that distance change to 20m. So, only people who have the most limited mobility would get points towards their WCA, so their Work Capability Assessment. 

Some people who are out of work and currently unable to return to the workforce would be offered tailored support to get them back in if they’re found capable of work preparation activities. So, I think that’s stuff like building confidence, sort of finding out about different jobs, etc. etc. 

NIKKI- It can be very confusing this, can’t it? So, to help provide some context on how these changes could impact disabled people we are joined by James Taylor, executive director of strategy at the charity Scope. Hello James. 

JAMES- Hi both.

NIKKI- Now, James, I said this before, all of this is quite complex, isn’t it? But could you just explain to us in a nutshell what these proposals mean for disabled people? 

JAMES- Yeah, it is really complex. And I think it’s really important to say these are proposals. It’s a consultation. They’re not going to happen straightaway. If they are approved they won’t come in until 2025. The changes are effectively about four descriptors in the Work Capability Assessment, and proposals to make it harder to get the points for those descriptors, and therefore putting more people into a category that puts them at risk of mandatory activity, conditionality, but also needing to start to look for work. 

The big challenge the government has had for the last four or five years, but particularly this year, is how to deal with economic inactivity, how to deal with people who are out of work. There are 2.5 million people who are economically inactive due to disability and sickness. Welfare spending is also up by about 40% over the last four years. And it’s hard not to see these proposals as quite a cynical attempt to reduce welfare spend and effectively just change some descriptors to try and push more people into jobs. 

NIKKI- So, in a nutshell then there are more disabled people out of work at the moment? 

JAMES- There are more disabled people out of work. It’s a record high of disabled people and people with long-term conditions and ill health, long-term sickness who are now economically inactive. And what the WCA does is gives you one of three outcomes: either you’re fit enough to look for work; your condition might impact you so you don’t have to look for that much work; or it might impact you so you don’t have to prepare for work at all. 

NIKKI- Yeah. 

JAMES- What the consultation is doing is trying to change that final group of people who do not have to look for work at all, and make it harder to get into that group. 

NIKKI- Right. We should also mention at this point, James, that we did ask the Minister for Disabled People, Tom Pursglove to come on and talk about this, but he did decline. So, it’s probably just worth mentioning that there. Have you heard from people who are really concerned about these proposed changes, James?

JAMES- Yeah. People who are really concerned about these changes, but also just concerned about the Work Capability Assessment in general. I think what we know from people who we speak to to support going through the process is that it’s a really negative experience, is that it can feel like a real slap round the face and I think a real reminder to people that society thinks of disability as very medical, the medical model, and not actually a societal issue. We know of lots of people who actually go into quite big spirals of depression and poor mental health, and it just leaves many people feeling quite vulnerable and feeling like they’re not good at anything at all. And that’s the problem with assessing people in this way is that the questions asked, the descriptors, have very little sort of bearing on real life or real life workplaces or working. Which is why it needs to go and why we’re really concerned that actually these changes are just going to make it harder for people to get the actual support they need. 

NIKKI- Yeah. I mean, there are some people that would argue the government is spending too much on benefits, on disability benefits. What would you say to that? 

JAMES- I think there are lots of people in this third category, limited capability for work related activity – it’s quite a mouthful – who actually do want to try some work and would like to work if they were given the right support. And the issue is nothing has been announced about how that support is going to be provided. All that’s been announced is how we’re going to move people from that group into a slightly riskier group where they’re going to have to start searching for jobs, and if they don’t we’ll probably take their benefits away. And so I would frame this as we need to invest in disabled people. There are 60 million of us in this country, if we halve the employment gap we’d boost the output of this country, we boost GDP. Clamping down and threatening people with tougher sanctions is not the way to do it. Investing in our employers, investing in knowledge, investing in specialist disability employment experts in our Job Centres across the country is really the way that we’re going to start to shift the dial on this. 

NIKKI- Yeah. Ems, what’s the timeline?

EMMA- Well, the consultation is open now and it should be open for another eight weeks, so you can go on and respond to that right away if you so desire. The government is hoping that the reforms will come into force in 2025, which is after the next General Election. The Institute for Fiscal Studies, Nikki, says that this proposal leaves the government with very little time to make significant savings between 2025 and when the Work Capability Assessment is due to be scrapped in 2029.

NIKKI- I mean, James you’ve already mentioned this, but I remember very well when that story came out that the government were going to scrap the Work Capability Assessment entirely. And you’ve brought that up already, but do you think they will scrap it? 

JAMES- I think it depends on who wins the next election. My view and Scope’s view is that it has to go, and we probably need to start again and create a welfare system that’s there for anyone who might need it and might need to draw on it at any point in their lives. And we probably need to stop this small change and small tinkering around the edges that is just not going to achieve what we need it to do. 

NIKKI- Yes, so why do you think it’s happening now, James? It seems an odd time to bring in such big changes when they’re going to potentially scrap it in the end anyway? 

JAMES- Well, I would suggest it’s one of two things: the government are very clear they want to support more disabled people to get into work; which totally laud, very supportive of. You don’t actually need to change the WCA to do that, but maybe we could talk about that in a second. The other reason is that we have a budget coming up in November, we’re going into election year next year, the government spend needs to come down and this is one of the ways budgets and disability benefits that you can reduce spend. So, cynically I would say it’s being rushed through ahead of a budget mid-November with a view to making some savings. 

NIKKI- Yeah. 

EMMA- It’s really, really important to note, Nikki, that the government says that any changes to benefit assessments will not affect people at the end of their lives or with severe learning disabilities. 

NIKKI- That’s good to know, okay. James, thank you so much. You’ve made that very clear and it’s been great having you on. Please come again. 

JAMES- I will.

NIKKI- He’s very good, isn’t he, this James?

JAMES- Thank you. 

NIKKI- Now, we do know some people are really concerned about this development so please do get in touch with us on Access All. We can pick this up again no problems. Let us know your thoughts on the changes. You can get in touch with us in all the usual ways.

EMMA- This week’s guest is writer Lucy Webster. Now, Lucy’s viral tweets about clubbing, accessibility and dating stresses they have been picked up by media in and out of the UK, and have started important conversations within the disability community and beyond it. Now Lucy has written a book about her life and experiences called The View from Down Here, and she’s here to tell me more. Lucy Webster, you’re very welcome to Access All. 

LUCY- Thank you for having me. 

EMMA- Down here means wheelchair level?

LUCY- Yes.

EMMA- Now, your book is about a young disabled woman – you obviously [laughs] – who has 24-hour PA support and uses a wheelchair etc. But there are a couple of big themes in it. And we’ve heard about ableism, we talk about ableism on Access All, the discrimination against disabled people. But something that I hadn’t really heard very much before was sexist ableism. Shall we just jump right in there with the big question and ask what is sexist ableism?

LUCY- We’re getting in here about experiences thinking mine compared to my disabled friends who are men. You’ve already mentioned the dating agency viral tweet that I wrote. I wrote on my form that I was a wheelchair user, and then they replied to me in an email basically saying people don’t want to date wheelchair users. 

EMMA- So, they said they didn’t have any luck getting wheelchair users dates, and they wanted you to wait for a specialist agency appear. That was a pivotal moment for you really, wasn’t it?

LUCY- Yeah. I spent a long time being fairly upset, not that disabled men do not have issues around dating, they do, but the particular way that I was spoken to felt sexist as well as ableist. 

EMMA- So, you don’t think a disabled man would have had the same email? 

LUCY- I think they might have had an email, the outcome the same, but there is something about the assumption that I didn’t know that there was ableism in dating. It felt so patronising. 

EMMA- What sort of different ways in terms of dating in general have meant disabled men have bad experiences and disabled women? 

LUCY- What really struck me, I wrote about this in the book, is how often on dating apps or out and about my experiences have been coloured by men not wanting to end up being my carer. That just hasn’t happened to my disabled male friends. 

EMMA- So, men not wanting to date you because they were afraid that they’d become your PA?

LUCY- Yeah. 

EMMA- And the other thing with sexist ableism thing that I have definitely experienced is the body, the disabled women’s body, and how that gets treated differently to a woman who’s non-disabled or to a disabled man. For me it’s like men in pubs, getting up in my grill as someone says in the office, getting in my face. What have you experienced? 

LUCY- Often I would be just completely desexualised and infantilised, and not even really seen as a woman or an adult. I get patted on the head or I get patted on the arm. And there is that kind of threatening, what can I really do to stop it, that I think that has a sexist element to it. 

EMMA- You talk a lot about care in your book. One of the things that really struck me was your description of how your morning tends to unfold. And fun, funny description including a two-person pirouette. 

LUCY- Yeah. I think we have this idea as a society of care as some awful lack of autonomy that happens to you. And it’s not. It’s just a way of getting what you need to get done done. It’s the same as choosing to get in a taxi to get somewhere quicker than walking. Yet it’s so stigmatised. And I wanted to show that a lot of it is quite nice. For me I don’t really have any control of my hands and I can’t walk, so I need someone to do things that involve walking or using their hands. 

EMMA- And is it okay for them to say I’m her arms and legs?

LUCY- Yeah, because they are. And because they’re there I can wear what I want to wear. 

EMMA- Oh, so they don’t come in and go, right Lucy, it’s time to get up now? 

LUCY- No. 

EMMA- I think that’s what people think carers, is it? 

LUCY- Yeah, and they think it’s like someone being your mum. They’re actually just my mates that help me. Although it’s hard and it can be a challenge to find the right person, I wish we didn’t think of carers as awful things. Because I think if we recognise that it can be great we would possibly fund it better and train people better. 

EMMA- I’ve talked to Nikki about this lots of times before, but you talked about having ten or 12 people now who are friends who’ve been your PAs, they leave, don’t they? 

LUCY- It’s hard finding the right people. And when you have the wrong people that is an incredibly isolating experience. 

EMMA- What happens when you’ve got the wrong people? 

LUCY- You just feel fundamentally uncomfortable in your own home. Some of them want more control over my life than they should have. It’s really hard to push back when you’re relying on that person to make sure that you’re up and fed and dressed. 

EMMA- Yeah. So, do you need to wait until the end of the shift and then sack them? 

LUCY- I’m going to be completely honest here, Emma, and say that I still at 28 years old bring in my father to do the sacking. 

EMMA- This book is great. It’s The View From Down Here and it’s in all good book shops. Thank you so much for chatting to me, Lucy. 

LUCY- Thanks for having me. 

NIKKI- Well, that was a great show, wasn’t it?

EMMA- Absolutely jammers. 

NIKKI- I was gutted to miss Lucy. I really wanted to meet her. It was a great interview, Ems. 

EMMA- Oh, she was fabulous. A really, really lovely person. And she’s done a lot of thinking for someone of 28, I’m telling you. 

NIKKI- Yes, she is, but she’s written it all down into a book. And hopefully she’ll be sipping champagne and laying back watching the bank balance go up because of it. Over-thinking rules. 

Now, we’re here every week. We’re on 5 Live early Monday morning. Our podcast is on ³ÉÈËÂÛ̳ Sounds. And you can talk to us on X, formerly known as Twitter, grr. Or you can email accessall@bbc.co.uk.

EMMA- We’re also on your smart speaker. It’s the one with the lady beginning with A. So, say her name and ask the ³ÉÈËÂÛ̳ for Access All and the smart speaker will play the most recent episode of our show. How cool is that? 

NIKKI- Amazing. Until next week people, goodbye. 

EMMA- Bye. 

[Trailer for Ukrainecast]

CLIP- ‘I could feel our house shaking.’ ‘That was one of the scariest battles.’ ‘I’m traumatised.’ ‘I’m completely destroyed.’ 

VICTORIA- Hello, I’m Victoria Derbyshire, one of the hosts of Ukrainecast. We actually put out the first episode of Ukrainecast on the very first day of the war when Russia invaded Ukraine. 

MALE- This is a European country and it’s at war. It’s extraordinary. 

VICTORIA- So much has happened since then, and all the way through we’ve been trying to tell people’s stories, what’s really happening on the ground in Ukraine. 

CLIP- My elder daughter was lying on the ground. She had been dead.

VICTORIA- And we’ll be here for you, making sense of it all for as long as we need to be.

CLIP- ‘People were being snatched and disappearing.’ ‘People took to the streets even after the Ukrainian forces had gone.’ 

VICTORIA- Ukrainecast is made by the same ³ÉÈËÂÛ̳ News team that makes this podcast.