Spinning Plates with Sophie Ellis-Bextor - Episode 132: Nine Tame

Episode Date: September 30, 2024

Nina Tame is a counsellor and a content creator. I started following her on Instagram because I love the way she educates non-disabled people in a light-hearted way. Nina was born with spinal bifida, and has four children. Her third child was also born with spina bifida. His arrival helped Nina accept her own disability much more, and also helped her own mum come to terms with her complex feelings, including guilt of having a disabled child. Incidentally, I spoke to Nina when she had recently lost her mum and we talked about her difficult journey of grief and the huge support of her other half, Jase.Nina is a great storyteller and made me laugh while telling me how awkward platform lifts at theatre venues feel. But the message beneath the story was that what disables her all over again in life, is not the disability but it is inaccessibility or other people’s attitudes.Spinning Plates is presented by Sophie Ellis-Bextor, produced by Claire Jones and post-production by Richard Jones. Hosted on Acast. See acast.com/privacy for more information.

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Acast.com. Hello, I'm Sophie Elisbexta and welcome to Spinning Plates, the podcast where I speak to busy working women who also happen to be mothers about how they make it work. I'm a singer and I've released seven albums in between having my five sons aged 16 months to 16 years, so I spin a few plates myself. Being a mother can be the most amazing thing, but can also be hard to find time for yourself and your own ambitions. I want to be a bit nosy and see how other people balance everything. Welcome to Spinning Plates. Hey hey, it is I.

How are you? If you live in the UK, how have you been coping with the weather this week? I'm sorry to be British and bring it up, but it's just been raining often on the whole time. I don't mind a bit of rain, that's fine. But what I am struggling with is the way that the weather is actually sort of flirting with it. So it'll rain downpour, stop, you can leave the house. Oh, bit of sunshine. This is good.

Why didn't I bring my sunglasses? Oh, no, it's raining again. I'm wet. This morning on the school run, I got drenched. I wore impractical footwear. It was my own fault. Anyway, no matter. Everything's fine. I'm loving being at home actually, so I'd rather be wet on the school run than cozy on a tour bus miles from home, so this is good. And I've been organising and sorting myself, just getting on with things at home, the to-do list, prepping things for the new single, because that's all done. I only got it mastered this week, so that's exciting. I'm really happy with how it sounds. Yay! Got there in the end, exciting times. So I'm starting to finish off the album. The single is going to go to radio I think October the 18th or something so quite soon I'm filming the video in a couple of weeks. I love this bit to be honest. It's really exciting. The bit always get a bit nervous is just before it comes out

because suddenly it's like the question marks are gone and you're gonna actually find out what happened next. I quite like it when it's all in the ether. Anyway I will sort it. What am I doing? I'm setting my dressing room stroke raised bedroom trying to organize stuff because I was trying a friend of mine sent me a, gave me my belated present, birthday present, of a really cool candle. It says Jaws on the side and then in the candle wax there's a little shark spin. So you know, good fun. I was trying to take a picture of it to send to her to say I love it and every time I tried to take a picture in the background was loads of rubbish so I couldn't get like a nice picture to send. I thought I think it's time to

sort out the rubbish actually and I'm always impressed when people on Instagram take pictures of themselves wearing outfits at home and they look really cute and their backgrounds all really nice and neat I just don't have that. It's so like little piles of things everywhere and bags containing things but I'm getting through it I think just when I've been away a lot I just get a bit I'm like that anyway and then I get worse but the house is slowly coming back into itself and I'm dealing with things. Getting through the to-do list and yeah, I hope everything is good with you. I've got a lovely guest this week who I wanted to have on the show for... on the show? Oh god, check me out. On the podcast.

Not a TV show. Sorry about that. I wanted to have on the podcast. Sorry, that's made me giggle. For ages because I've been following her for a while. Her name is Nina Tame and if you follow her, maybe you follow her for the same reason I do. I came to her account because she has a very unflinching, witty, informative, frank, smart discussion all about what it's like to be disabled Nina is in a wheelchair she was born with spina bifida and It started to seriously impact on her physicality in her teenage years

So she was in a nap hospital. She was on crutches her first two pregnancies she was not in a wheelchair and then for the last little while she has been and she's got two more babies since then. So she has four boys, two that are kind of the age of my eldest two and two that are kind of the ages my youngest two. So teens and and and 20 and then little five and eight I believe for the little ones and one of her boys her younger boys has been born with spina bifida as well and this is significant

not just because of obviously implications that come with that and the familiarity of it to Nina but also because it has caused her to feel actually differently about herself and to see it as something beautiful, which I think is really wonderful and special and has opened her up, I suppose, to communicating with this community through social media, through Instagram, that has been really significant in her life and been empowering and given her a voice to highlight aspects of ableism in society. So a bias towards people who are able-bodied. And obviously for Nina, her disability is pretty visible. You know, we can see a wheelchair

and we understand how that might impact on moving around. But obviously a lot of people have invisible disabilities too. So just focusing on that, talking about it, opening up discussion, all good stuff. Sometimes wandering into quite uncomfortable territory, like the fact that when she realised that her unborn baby had spina bifida, she was broken to about whether she would like a termination. You know, these are conversations it's important to have because this might have affected you, might be something that will. And I suppose also if your physical movement is affected,

how does it then feed into the expectations that we have of mothers expected to do the traditional roles? And for Nina's partner Jason, how sometimes he's looked upon as some sort of hero warrior that he takes care of of Nina too and of course no they have a very balanced relationship thank you very much so you know just all those sort of subtle nuances of what traditional society expects Nina wanders into all those spaces and talks about them frankly and I absolutely love it because I think it's important for everybody isn't it everybody benefits from that so I will leave you to listen to back to the Nina and my conversation it's over zoom but it didn't stop us getting on really well

it was a lovely lovely conversation and fingers crossed one day our paths cross in real life and as we're listening back I'm gonna keep tidying out this room. I'm getting somewhere. I've got some little clear areas of carpet. So there's hope on the horizon. All right, speaking a bit. And yeah, thank you so much to Nina. I loved, loved, loved talking to her.

So great guest. Thank you. Thank you. Thank you. How are you today, Nina? You good? Yeah, not too bad. Yeah, I'm all right. Thanks for making time for me. Oh, no, thank you for having me on. Honestly, I've been so excited about it. Like, my older children are just like, can't quite get over it.

They're very excited. I've got four kids, but my two older children have been very excited and not quite sort of like, but why you though mum? Why are you going on that? So thanks kids. I mean my children, I don't think they really have much of a clear white gap to most of the time really. Yeah they keep you very humble, it's great. Yes grounded, nice and grounded. Yeah I got back yesterday from being away for 12 days and it was like straight into like school run and getting back on top of everything and

Yeah, so hopefully my brain is working Alright today My mind's a bit like We had a briefman Recently and this is kind of sorry. Oh, that's's okay, yeah we lost my mum and it was expected because she'd been sort of poorly all year. Oh your mum, oh me love. Oh yeah it's okay but this is kind of, no pressure but this is one of my first things I'm doing going back so I'm like am I okay to do this? Yeah I'm fine, I'm fine. I know that feeling very very well, it's like you're, it's like

you've lost a layer of skin or something. Yeah it's very, it's very strange. It's like you've lost a layer of skin or something. Yeah, it's very strange. It's also been sort of empowering in some ways. I think sort of just having that level of stress puts a lot of things into perspective what maybe I had been stressing about previous to this year. So that's been kind of yeah interesting and I found this really lovely message from my mum literally last week in my Instagram messages and I think I've been on woman's hour or something and I've been really worried about it and I've done it and I'd come on and I'd said in my story something like I went really well remind me of this and my mum had just sent me this really sweet message just saying like you've got to have more

faith in yourself you're really good at what you say so I've kind of screenshotted it and I've kept it and I'm like, this is nice, this is, yeah. Well, that's really nice. And I'm so sorry, how recently did you lose your mum? It was May, early May. So yeah, it's but as I say, she kind of she got so I mean, she's been dealing with stuff on and off for sort of six years and then it just kind of all came back at the beginning of the year but for a while we thought it was all kind of treatable and it was all good and then it just yeah wasn't but she was in a hospice it was really it's weird it was like horrific but also it was so beautiful in parts um me and my

older sister I'm really sorry I'm just talking at you. No, no, I'm here for her. It's something that, you know, it's a really significant thing when you lose a parent. And it is poignant to go through the experience of losing someone, being aware that that's what's happening. Yeah, and I think like, it's, yeah, as I say, like me and my sister, just the whole family really, like she's got older children, I've got children and everybody just rallied around my mum and it was just, yeah, it felt like a real privilege to get to sort of see her out of the world and get to sort of meet the different parts of her that she was at the end. Because you do, you know, people talk about it, end of life and it's, yeah, it's a very bizarre

thing to have gone through and grief is as well. I mean, I'm a counselor is like my background and what I do and I've worked with people going through grief and I understand it on a book level but I've never really sort of understood it obviously on such a personal level. So that's been interesting because you kind of tend to, obviously with your mum, you've known her through all these different stages of your own life. So I found myself almost grieving for my mum differently on different days, depending what part of myself I'm in. So today, you know, I'm feeling okay, I'm sad, obviously it's always there. But then other days, I'm six years old again, and it's guttural, and it's I want my mum and it's always there. But then other days I'm six years old again and it's guttural and it's, I want my mom and it's, yeah, it's very interesting.

I've got a new found empathy for, I've always been obviously empathic for people going through it, but more of a like, Oh God, yeah, it's fucking horrific. Isn't it? Um, I get it. So yeah, I feel like, you know, I was thinking about your podcast and sort of spinning plates and yeah, this year has definitely been the one. Being self-employed as well and trying to work around it all. So yeah, it's been one. But yeah, I'm fine. I'm here and I'm excited as well. Well, I think you've articulated that all so well and I know that that is a massive deal and it's

actually a privilege to talk to you about your mum because I quite often find myself when I'm talking to people about their relationship with motherhood, it makes them refer back to how they were raised and their own childhood. So I wondered maybe how similar is your children's childhood to your own? It's very different. I'm 44, so I grew up in the 80s as well and obviously I was born disabled but I wasn't sort of, you wouldn't have known I was disabled and back in the 80s so I've got a

condition called spina bifida and I've got sort of a family friend of ours also had a kid with spina bifida five years before me and when he was born she was asked would you like us to feed the baby or would you like us to let him go because in those days if you were born with spina bifida it was seen as a sort of death sentence basically. So when my mum and dad had me they were very relieved that I was able to walk because obviously walking is very much held as the gold standard and, you know, especially back in the 80s, disability, you know, we've come on a bit with attitudes towards it,

but in my parents' day, it was very much... My mum sort of carried a lot of guilt, like she used to sort of think, had she done something? You know, it was seen... Disability wasn't seen to sort of think, had she done something? You know, it was seen, disability wasn't seen as sort of an, not a positive thing, not a neutral thing. It was very much an unfortunate thing. And they never made me feel like that. It wasn't something we really kind of sort of spoke about. And then when I became a teenager and it kind of really kicked back up for me through secondary school and I was in and out of hospital and lots of operations and stuff and my mum found that sort of really stressful. She had her own mental health stuff and she found it really hard to deal with. So we had a bit of a turbulent sort

of time when I was a teenager and then I've got four children as I said and my third child has got the spine bifida, like me. And that in itself was such a healing kind of journey for me and my mum because as soon as I found out I was pregnant with him, I was like, this isn't, I don't want people feeling sorry for us. I don't want people being like, oh, that's a shame. I don't want my whole pregnancy clouded as if it's a negative thing because he's like me, because I don't see it like that. And I think she sort of saw my attitude towards it. And I think that really sort of helped her.

And then around that time, I wasn't, you know, obviously, I'm very proudly disabled and gobbled off about it online all the time now. But back then, I sort of, I'd kept it hidden all my life. I thought it was a really shameful thing. I've got like this sort of lump on my back and missing toes and all the rest of it. And, you know, as a teenager going through sort of my early 20s, I generally thought it was a huge flaw and just had all these ideas about it just was not into it at all and then he was born and the disability looked so beautiful on him like his lump was beautiful and it was a real moment of A if it's beautiful on him then why can't

I entertain the idea that it's beautiful on me as well. And B, I knew that I never ever wanted him to hear me say anything negative about my disability. Not that in a toxic positivity sort of way, like believe me, like he hears me go on all of my rants, but I didn't want him to ever hear me say anything negative about my body because that's what his body looks like as well. And that was really important to me. And I think we just from the very start, when he was really young, we just were really open with him, we spoke to him about it, we spoke to him about the stuff he might encounter, like, and he did, you know, he, I think he was only in sort of

reception, so it would have been about six, and they were getting changed for PE and some kids sort of caught side of his back and said something to him and he was so like, he wasn't upset. He'd come out of school really just sort of a bit sort of like puzzled by it because obviously for him it isn't a negative thing, it's just part of him and he said I just said to the mummy, well that protects my spine and that was it. He'd been so sort of matter-of-fact about it and I was like, God, I internalized all of it for years. So I think in that sense, we brought him up differently because obviously I'm disabled.

So I was much better equipped to be able to sort of deal with that with him. But yeah, it was really lovely for my mum. I think as she saw me speaking about my disability, you know, obviously, I started using a wheelchair full time for five, no, five years ago, I think. And when you've got a kid with spina bifida, you are sort of told, well, you know, that's the worst case scenario, worst case scenario if they're in a wheelchair. And I think her watching me just sort of really live my life, do all the things I've

done over the last five years since becoming a wheelchair user, talk about all of this stuff online and have this sort of platform to talk about how for me disability is just a neutral thing, it's just a part of life. It's not tragic, it doesn't need pitying, it's just a thing and every disabled person's life is going to be different and happiness doesn't depend on how your body or your mind functions solely. And I think that was just lovely for her to see that and to be able to shed some of her own, like, realising that my disability wasn't a negative that she caused, actually it's impacted my life in a really, really positive way. Yeah, and I think, I mean, we're the same age pretty much, I'm 45, so a tiny bit older

than you, and I think you're right that the language around disability has definitely evolved since then. But I also think it must have been your mum challenging, because when your baby is born, especially if they're parenthesizing things in that way, firstly I think so many people when they have their babies fall outside of the typical textbook and I think some of the language around pregnancy and expectation is so rooted in things that are actually not wildly helpful. We talk a lot about things in this very strict, you know, with a little box of expectation. And for most people, we live in the bits out on the outside of things, but we're not very good at countering that.

We can get a bit uncomfortable when it comes to talking about things that fall outside of that, outside of expectation. Like you were saying about the gold standard being when you hit milestones and walking and things like this. So I can understand, if it were for your mum, that would have felt really uncomfortable. Also, you don't want to see your child become a patient because being a patient is quite a serious thing to accompany childhood. And you want your child to be feeling carefree and running about. However, isn't it amazing how you can see in your son where the evolution has gone in terms of how your relationship has come on with your body and with disability

and then your son is the next step in that line that he can stage with friends like oh, this is just my body, this is how things are and probably for those other kids that was the one day they asked that question and then they don't need to ask that again because kids are quite straightforward like that, aren't they? Oh, kids are so much better with disability than adults are. Like, you know, if I get a little kid come up to me, they're always just like, just, you know, because they don't know. They don't know what a wheelchair is. And the minute you tell them, I mean, kids go nuts for like, you know, bubbles and wheels, basically.

So, you know, they always just love it and they're not. And it's the parents. Like, sometimes a child will go to approach me and a parent will literally, like, yank their kid out the parents. Sometimes a child will go to approach me and a parent will literally yank their kid out the way. I'm like, don't do that. You're literally making them feel that I'm some weird, scary thing and I'm just not. So yeah, seeing him, that was lovely. Also, even with my mum, as she's sort of got poorly over the last six years and she's needed to sort of use... We took them to centre parks and I was like, mum, you need to get a mobility scooter. And she was like adamant, like just absolutely not. And I was like, okay, I'll be really gentle because I know that most

people I know over the age of 60, like are the most sort of reluctant, you know, to, to start using mobility aids and stuff like that. But she ended up getting on this mobility scooter and it was just, she was just an absolute menace. She loved it. We were just like both racing around the forest and it was really nice. So it was nice kind of, and even like my dad, I mean, when I sort of decided to get a wheelchair, obviously it's not the choice for everyone, but for me, my mobility had started to decline. I was using crutches and I just, it just, yeah, it wasn't so I wasn't leaving the house really because I was so wobbly and it was actually Jason my other half who was like, I thought about trying a wheelchair. No and then I sort of did and obviously yeah they gave me so much

freedom and everything else but my dad was quite like we're not gonna give up walking completely are you and it'd be my mum would be like Dave that's not what she's getting it for and really sort of like raining them in I'll be like no dad obviously I'm not like choosing just for fun because I can't be bothered to walk anymore but he has just had such a sort of big he tries so hard I mean he still he still gets it quite wrong um he was talking to me other days like a member of this sort of voluntary club and he was saying and he said and some disabled people came in and I was like okay that's good dad disabled people that's better than some of the things I've heard you say over the years and then he was like and then the normal

people and I'm like dad so close so so close but he's really like he was telling me the other day like I'd lent a friend of his an old I've got this really nice sort of it's quite funky sort of Walker walker thing, which, you know, those days are long gone for me, I can't use that. So I gave it to his friends and my dad said, and I said to him, you know, you wouldn't feel sorry for somebody for wearing glasses like me, so you shouldn't feel sorry for somebody for using something else. And I'm like, oh my god, dad, ally, where did this happen? You do listen to the stuff I say. And it's just been, yeah, it's been lovely because they've been

like my biggest sort of cheerleaders like my dad will just share everything on his Facebook to like his 13 friends anything I've done and then he's like so you went viral today because I shared you on my Facebook? Thanks dad! But yeah it's just it's been nice it has definitely been a this sort of period of me becoming sort of more disabled if you like has been sort of period of me becoming more disabled, if you like, has been sort of really healing in lots of ways for me and my parents. So that's good. Yeah, and it sounds like your relationship with disability in your own body has changed hugely from that teenager with all those emotions and trying to repress all those feelings and

not really maybe seeing an example of how your life could feel positive and happy, going alongside your disability to now being, you know, proud and a lot more, you know, comfortable with all the aspects of it. And I'm very conscious as well talking to you that we have the parallels of being, you know, proud proud and disabled being a neutral term, but also the significance of how it affects accessibility. I wondered, as a parent, because I was reading this morning, so it's about 2% of the UK population that use a wheelchair, you know, mainly. And how easy is it to parent and go to all the places that we have to go to with our kids when you're in a wheelchair? It's tricky.

I got everything from that sound. Just that, that's sort of, he started working from home during lockdown and I'd only started using a wheelchair sort of pre, just previous to that. So he sort of stepped into the role of doing the school run and stuff and it's weird actually because I'd, like I've got sort of a 19 year old, 16 year old, 10 year old, 6 year old. There you go. So 19, 16, 10 and how old is your little one?

Six. Six. Okay. Yes. And my previous, my eldest two are from a previous relationship and I think sort of my eldest was about six, I think, when I met Jay. So that, you know, he's been a pretty constant in in all of their lives but with the oldest two I wasn't in using a wheelchair

I was using a walking stick for a little bit but I did everything you know I was the full-on you know I did the school runs I did every meeting all of that stuff and it's been weird because it has changed in a way Jason's taken a lot over the last two years especially a lot of the sort of what your class is typical, the mum role, you know, he's even, I used to do all the admin and he would do the school run, but over the last six months, we've stopped caring for my mum. He's just taken on everything, which in a way is bad. I'm like, you are kind of enabling me to, yeah, just sort of-

No, he's supporting you. He is supporting me. Sometimes I think I have to find that balance of sort of, because it is, you know, if you put me somewhere accessible, I don't know, stick me in a shopping center because they're generally pretty good. But I don't feel disabled. Like, obviously I've got a wheelchair,

but for the most part, if I can get around, like actually using a wheelchair is, you know, I used to love riding a bike as a kid and even as an adult I had a bike and I loved it. And I get a similar feeling when I'm in my chair, you know, if I'm going down a hill, if I'm just racing about, you know, mucking about the kids, it's an enjoyable thing for me, like I just enjoy using it but what disables me more, you know, I always sort of say to people that yeah, like my legs are ornamental, but the wheelchair fixes that, but then what disables me all over again is inaccessibility and people's just really just weird attitudes

and having kind of walked through the world, being able to hide my disability and, you know, being treated like a non-disabled person. It was, it's just so quick the minute you're in a wheelchair, just the attitudes, it's really odd. People are either kind of trying really hard to pretend you're not there. So I think like it was last year I had booked me and Jace, booked and paid for, like this weekend away and I went to check us in at the hotel reception and she would not talk to me. She would only talk to Jace to the point where Jace just turned his back on her. So she was forced to talk to me. But we just kind of, you know, people don't expect you to be a parent,

which means that accessibility isn't thought about. And my sort of little one school now, they're definitely better than they was. They've started, whether it's because they've seen what I'm talking about, they've started to get better. But there was aspects that wasn't accessible. And I remember there was going to be this sort of... I don't often get upset about stuff, but this one sort of really got to me. I think it was they'd invited all the parents in to help read. And wherever it was going to be, the classroom wasn't accessible. And they'd said to me, oh but you and you know your little one you can go and

read in the hall and I just I don't want him to have to leave the classroom with his mum because his mum's disabled and you know I just I don't want that to impact them in that kind of way. And we sort of we had another one where I hadn't been using my wheelchair for that long and I'd had this really excellent night at the Southbank Centre. I just thought the accessibility was brilliant. I again, like had an evening where I didn't feel disabled. It was lovely and it gave me so much confidence. I said, you know what, I think I can take Clark, like, I think he was six at the time, five or six, there was a show in half term and I was like, I can do this, I can take him on my own.

So Jay sort of offered to drive so I'd have one less thing to worry about. And then we got there and there'd just been this mix up and it was different seats that we were sitting in and these ones were accessed by this platform lift. And I fucking hate platform lifts. They're like, it's when you've got maybe four or five stairs and it's just like a platform you wheel yourself on and it's so slow. Like it couldn't be any slower. And you just feel like they should play some sort of comedy music five stairs and it's just like a platform you wheel yourself on and it's so slow, like it couldn't be any slower and you just feel like they should play some sort of comedy

music like while you're going down because you're just sat there. So it was like half term it was absolutely rammed, loads of parents, loads of kids and they were like, oh you've got to get on this platform list. I was thinking, right, okay, this isn't ideal but you know, it's fine. So I said to my little one, you just wait down there, just wait at the bottom of the stairs so I could see him the whole time. But I just couldn't get it to work. And I was probably on it for about three minutes and it felt like about five hours and various different members of staff coming over, kids looking and pointing, me just thinking, oh, I just want to take my kid out.

And it got sorted, we had to go to another lift and whatever. But it was like such a little thing that it's like, okay, this isn't me, this is accessibility. This is, you know, why haven't you checked your lift this morning? Why has that not been checked before you've opened? Make sure everything's okay. You know, it's just little things like that. Like often if I'm trying to book tickets for a show, I'll be able to get sort of a wheelchair space and a companion space. And I'm like, what about my four kids? Where are they going? So there's not products, really adaptive products for disabled parents. You kind of have to figure stuff out on your own.

So like when my youngest was, I really lost my mobility after my youngest and I started using a mobility scooter first. And things like that, I just had to figure out how I could safely carry him on my lap. There's just not really any acknowledgement or support of disabled parents because you're presumed either too disabled to have a kid or that you shouldn't have a kid because you're disabled. Oh, that's made me cringe quite hugely. I mean, I think, just even if that thought crosses

your mind and I know you're describing the platform lift in a way that's making me laugh because you're saying about the music. But then I was thinking, actually, it's a funny idea in how you described that aspect, but that bit where you're sat there for those three minutes that feel like an eternity and it strips you away of, those experiences can feel humiliating and unnecessary.

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Acast helps creators launch, grow, and monetize their podcasts everywhere. acast.com. And it sounds like there's just quite a lot of sort of kind of well-intentioned but slightly thoughtless attention to the detail of what could actually make people feel that they've got true inclusivity rather than just a sort of ticked box of acknowledgement? Oh, like, excuse me, like bare minimum accessibility. So it's the difference between, so another part of my job is I do sort of content creation online and I might occasionally get invited to something.

So I've been working with a clothing brand who are doing some Christmas meal at some restaurant. And I was like, oh, is it accessible? And they were like, yeah, yeah, what you need to do is there's steps to get up to the restaurant. So when you get there, just try and catch a member of staff's attention outside the window, someone will bring you a ramp out.

And I'm thinking there is no way that I'm sat there already feeling like, you know, the only disabled person there, obviously. Loads of, you know, young trendy people and there's me waiting for my ramp. Like, it's a spectacle. I don't need to feel like a spectacle. Whereas versus we got invited to Comic Con,

like London Comic Con, we got invited to this specific stand. Now all the stands were on these tiny little plimps, they're like an inch tall and I could have easily popped up on it, but they had, it was about a cartoon cat, and so the whole stand was very tactile, it was a lot of fur, and they just put in these little ramps made out of orange fur and they completely matched the rest of it, so you didn't really notice it was a ramp, but the parents with buggies were using it as well and I was able to use it.

And it's like, this is how we do it. Like obviously not orange furry ramps everywhere, but you know, accessibility can be really beautiful. And when we tend to meet the people sort of at the bottom of the whatever ladder who need the most accessibility, when we meet that, it benefits everyone. Yeah. You know, at some point in your life, you're either going to become temporarily disabled.

If you live long enough, you're probably going to become disabled. And we're all only one, not to be doom and gloom, but one accident or illness away from becoming disabled. So it just feels like people should care more about accessibility because it does benefit everyone. But we live in a world where all people want to know about me is my medical details. So strangers will ask me like what's happened to you? Why are you in a wheelchair? And I don't answer, you know, I've sort of obviously disclosed to you today.

I'm quite happy when it's on my terms and it's relevant. But nobody was asking me about my last smear test when I was just walking around, presumably as a non-disabled person, it'd been outrageous. But disabled people are still kind of seen as a medical curiosity, as seen as slightly other. I mean, when I was pregnant with,

this is going on a bit of tangent now, it could potentially get a bit dark, not dark, I'm joking. But when I was pregnant with Clark and at my 20 week scan, they disclosed that he had spina bifida, we were offered determination immediately. Now I am pro-choice, I've had a termination when I was younger of an unwanted pregnancy, but I'm very much sort of pro-informed choice. And had I not had spina bifida and just didn't have an awareness of it, I probably would have been really terrified because they've said, you know,

your much-wanted baby has got spina bifida. We don't know whether he'll walk or not. We don't know this, we don't know that. Would you like a termination? And I was just a bit like, no, I've got that too. It's fine, don't worry. he'll walk or not. We don't know this. We don't know that. Would you like a termination? And I was just a bit like, no, I've got that too. It's fine. Don't worry. We'll keep him.

But we were offered a termination at every subsequent appointment that I went to. And I was really lucky with my midwife, Yvonne, who I just, she never felt sorry for me. She just never, she was just so amazing and really supported me because I feel like a lot of parents who are given a diagnosis of disability, you know, this sounds really cold but I feel like in the general societal view it is much cheaper to offer a parent a termination than to support a disabled child and baby and adult into

adulthood. And even spina bifida charities that are set up to supposedly support parents and to normalize it and to, you know, to say actually spina bifida isn't a death sentence. Many people, you know, even worst case scenarios like me who are in a wheelchair, you know, still live really great lives. But they spend a lot of their funding on trying to eradicate it and it can often feel really shameful. I remember after I'd had Clark, the first thing the doctor said to me

coming through the curtains the next day, like the pediatrician doctor was like, did you take folic acid? And I was just like, yes. And it's like, you're just, it's made to seem like it's such a flaw. You've somehow, you fucked up because maybe you didn't, you know, you could have prevented this. And actually, all the parents I've ever come across and spoke to about their kids, whatever,

because the spinal bifida is a very umbrella disability. It's one of like the most common, that and cerebral palsy are like one of the most common sort of disabilities within birth. And it presents so differently. Obviously, some kids do use a wheelchair, you know, some kids don't at all, some kids you wouldn't even, some people you wouldn't even know they had spina bifida and I just wish that people were given more information. Maybe like, hey, here's this other family who've got a kid, you know, you can go and talk to them and to be able to make that decision because, you know, I'm very privileged. I'm, you know, I'm white, you know, Jason's family, we've sort of been able to, you know,

because it's expensive, being disabled is really expensive. So I understand there's a level of privilege in me being able to say that, of course, I would never, you know, terminate my disabled baby. I understand for some other people that, unfortunately, you know, we have an absolute crumbling health and social care system. Disability is so expensive, waiting lists are huge, like our son wears a leg brace and we were lucky that Jason's family, they helped us pay for that because we get that privately because we had such a sort of rubbish time with it on the NHS that he would have just,

if he hasn't got his leg brace, he can't go outside. Like, you know, he can go in the leg brace he can't go outside like you know you can go in the garden but he wouldn't be able to just you know go to school or anything else and and they kind of expected you to wait weeks for that and we're like well no he's you know he needs to be able to just have something as basic as that. So I do think there's a there's a lot of sort of privilege in being able to say that but I just I just wish that there was just more education around disability I wish that you know we supported disabled people better in our society. Because I feel like lockdown, during lockdown and how quick suddenly everybody's working from home.

All of a sudden. And even though so many people, especially people who've got chronic illness, have been asking for flexible hours, can I work from home? And it's always been absolutely not. And then suddenly it was, you know, in place overnight. chronic illness, have been asking for flexible hours, can I work from home? And it's always been absolutely not. And then suddenly it was in place overnight. And I just think it's, yeah, the way we sort of, our social care system and the way we treat disabled people in this country is just appalling.

Yeah, not a fan. Yeah, I'm doing lots of emphatic nodding over here. Firstly, I'm sorry, because I think that that experience of your scan and someone going straight to would you like a termination and then being asked over and over again is an extraordinary, at the very top note it's tactless, but right down to just, I think it's quite horrifying actually, because information is so key, but also as someone with spina bifida yourself, living your life, that that would be something that be said to you, is I can't quite get my head around it, and I think that's an extraordinary disservice to do to somebody, and to speak to them like that.

And you're right about just giving lots of information so that everybody's clued up about who, you know, the very tip of the iceberg of who you're about to parent. Which, you know, the scans can only tell you so much. There's so much you find out about your kids when they're here. Exactly and I feel like, you know, know it just all the people I've ever spoke to have just said oh I wish you know I spent my whole pregnancy so scared like and then my baby was born and I was like oh my god my baby's here and I love my baby and I wish that you know it's just yeah I feel like some parents generally spend you know their pregnancy terrified and you say, you just don't know. Like, you can have a kid and then something,

unfortunately, happens to them a couple of years in. We don't know what sort of mental health anybody's gonna present with. Exactly. You know, it's just, yeah, I kind of, I do, I don't know, it's tricky. It's easy for me to say, I feel like if you're prepared to be a parent, then you should be prepared

to be a parent whatever kid you're gonna get. But yeah, that's me, a disabled person. So I know it's a little bit more nuanced than that. But it's, yeah, I think it just makes me sad. And I think when I get sort of parents who are expecting, who message me, it's just like my absolute favorite thing. Because just to be able to say that, you know, your baby's come in and you are going to love your baby so much and all the rest of it, it'll get dealt with, don't worry about it, enjoy your

pregnancy, ignore other people and you know, I just, yeah, I want people to have that chance to enjoy it and not to be so scared by it. Well, I think the ones that get through to you are lucky because that's an amazing, emph and true statement. So I think that's that's lovely if they reach out to you and they're able to have that reassurance because yes that That bit where they're in the wilderness and they've just been told things that sound big and scary and unknown must be It's very isolating isn't it when you as I say you sort of fall outside the pages of of the book that you've been given on You know what to expect kind of thing? I know you mentioned your work as a counselor and then you said about your content creation. So when you're thinking about what you do, what's your occupation?

What's the first thing that pops into your head? Because I'd imagine they both take up quite a lot of time. Yeah, I feel like sort of I think I feel a little bit not sure where I'm going with it all at the minute. It's, I sort of, I started just before my mum got sick at the beginning of the year, I'd started something like working for a really lovely small sort of disability startup. And I think I, I get in my own way a little bit with my own work. So like last year, like I did really well. My brain still goes, oh, might not be like that again. And you know, and just gets all panicky about it. So I started to think,

right, you know what, I need a regular job that's going to need to work for somebody else. I need a regular job that's going to pay me every month. And I started doing that and I've really enjoyed it. But then obviously stuff with like my mum happened and I sort of ended up like two weeks after she died, just quit that. I was like, no, I can't do that. I need to be home, I need to be with my babies. I need to, and it just reminded me, I suppose as well, of how much I enjoy doing this sort of mentoring side of it.

And I thought, actually, I want to keep, you know, I'm good at what I do. I'm good at talking about disability and I want to sort of keep doing that. So I've always seen my work very much as sort of split into making content, trying to educate non-disabled people, but not in like a dry way. Like I've always tried to keep it a little bit sort of lighthearted and just get sort of people to understand that disability doesn't have to be awkward, that you don't have to, you know, if you're confronted with a wheelchair user in the wild,

that you don't need to sort of feel really weird about it. No, I think you're brilliant at that. Absolutely brilliant. That's why I started following you. But do you ever find it frustrating that your disability has had to be accompanied with something that's about a message as well? Or does it empower you?

Oh that's interesting. I suppose it's, I never set out to do it. So like when I had Clark and I'd sort of, yeah when I started to lose my mobility more, I just had a regular Instagram account, I don't know just friends and family on there, pictures of the kids and the cats and, you know, I was calling myself differently abled which I absolutely hate now because I thought that, you know, I'm not like those other disabled people. Just really had all of this internalised ableism and all the rest of it. And then, sort of obviously having Clark, watching him, like big turning point for me, obviously if my own body was when he was born and I really kind of started to come to terms with my, you know, with body neutrality, but up until

sort of he went out into the world, when I was using a walking stick, if somebody come up to me and said, oh, what have you, you know, what have you done to yourself? I hated the question, but I would always answer them. I just sort of thought that you had to, that it was just polite. So I would sort of, I used to tell them like my whole backstory and then they'd be there like, God, I was hoping for a juicy story. This is not what I was expecting. This is so boring. And then they'd kind of walk off. And then as I became a little bit more empowered, I would sort of say, oh, nothing's wrong with me. I'm disabled. And then they would always go, oh, I'm so sorry. And then I'd have to go, oh no, it's fine, I've got a great life.

And I just, I just hated it. It's so just, you know, you know, just like, I just want to go to the shops, like, please leave me alone. And then when he started school, and he came home, and he was like, people keep asking about my leg. And then I was like, well, you know what, I said, you don't have to answer him. I said, if you want to, you can. I said, if you like somebody, you get to know someone, you exchange little tidbits with each other. I was like, that's cool. I said, but also you can make up

a completely elaborate story if you want. I said, or you can just say to them, my mommy says I don't have to answer that. And that was just so empowering for him. And then I was like, oh, actually, I don't have to answer it either. But I still find it so, it still feels so impolite. Like we were at the park a couple of months ago walking the dogs.

So it's like me and Jace, I think the two little ones were with us and all the dogs and bumped into this really lovely elder lady. And we were just sort of chatting and having this nice chat. And then she just sort of went, oh, so what have you done then? And I just sort of chatting and having this nice chat and then she just sort of went oh so what have you done then and I just sort of smiled and she went oh is that a nosy question and I said oh it is a little bit hardly know you

and then she kind of just laughed and then she said oh it is a shame but least you've got a pretty face and I was like this is sweet it's sweet I'll you'll I'll take it. Okay, thanks. But yeah, it's just, I don't know, I just, it's all of, and I didn't even answer your question. So I guess as I started to become sort of, yeah, using mobility aids, I then sort of discovered other disabled people and saw these other disabled people like rocking their walking sticks or whatever else.

And I was like, oh wow, like I'd never had a sort of community before. And then I sort of tentatively started talking about how I didn't like it when people asked me what was wrong with me. And then to have all these people sort of say, hey, we don't either. Because previous to that, if I'd sort of said that around some of my non-disabled people in my life, they would have said, oh, people only mean well. And I'd have thought, oh yeah, I'm just making a fuss, I should just answer.

So it really, like that for me was a huge turning point and I found that so empowering. And then I just couldn't sort of shut up about it. And then my account just kind of started growing. And then I found myself, you know, people would ask me to come and do talks and stuff and I've got such social anxiety. Like I once threw up on myself in a Christmas carol concert at secondary school and it has scarred me for life. Yeah, that sounds quite a significant core memory there.

It really is. So every time I have to do anything like that now, I'm just like, you're going to throw up in front of everyone. At least you're only lit by candlelight though normally at carol concert. I think it was fine I definitely got away definitely didn't like no definitely didn't get absolutely hell for it at school the next day after it was fine um but yeah it's it's been a so it's been it's just been a really interesting journey and I think like sort of And I think publicly exploring what disability means to me and grappling with my own internalized ableism and undoing all of that.

I do sometimes say, oh, I'm a professional disabled person because that's what it kind of feels like. But equally, I think there's so much value. Sometimes I will just post content, which is just me doing whatever with the kids and just being a regular person. Because I think that in itself, like lots of the disabled people I follow, you know, they're just like regular people, they don't necessarily talk about their disability. And but again, in itself, I think that representation of just,

oh, look, there's a boring disabled person, you know, there's a, I think we have all these notions that, oh, disabled people are this, this and this. And it's like, there's a, I think we have all these notions that, oh, disabled people are this, this and this. And it's like, but who are you talking about? Because disability is such an umbrella. There's so many different people. You cannot say all disabled people are this or they feel like this or they're this because we're not.

But what we tend to see in the media though is like the Paralympians, the inspiring disabled people, you know, we'll put Coldplay on in the background and we're all going to feel a bit sad, but, you know, look at them overcoming their disability, you know, or it's we praise the non-disabled person who's the hero because they're the carer, you know, Jace gets a lot of praise for being, you know, just for being with a disabled woman.

He is a true saint. But yeah, it's, we get very, the narratives around disability generally shaped by non-disabled people and they've not moved on that much in the last, you know, however many years. So I think just, I love seeing, you know, social media, I think it's been so good to sort of to platform all sorts of people that wouldn't have been platformed before because I'm also very aware that a lot of the disabled people who do have a platform, whether that's on the telly or on social media

or whatever else, tend to be white manual wheelchair users. And there's so many other intersections of disability and people who are multiply marginalized who don't necessarily get that same platform. So I think it's sort of, disability, even though wheelchairs are on the toilet door, like wheelchair users, as you say, like, you know, a 2% of the population, but we're something like only 2% of actual disabled people as well. Right.

You know, because obviously, you know, you have disabled people that you wouldn't know. Yeah. So I think it's, I think social media has been amazing for bringing some truly authentic disability representation because I just think in general in the mainstream it's lacking. Yeah, I mean, while you were talking, I was thinking about examples when I've seen in TV shows or films where there might be someone who has a disability but it's not talked about and it's not mentioned and I've always thought that is the way towards true inclusivity when it's not dealt with like it's a characteristic of that person. It just is an incidental, exactly, but it's still few and far between but hopefully getting better. I think, I definitely think, as I said, we're peers and I think as a child of the 80s, I do feel there must have been so many decades where so many people just

felt like they would look outside of their own world and just not see anyone that seemed like them in any way. No, you just didn't. I remember sort of, so it would have been about 1998, 1999, I think. I remember there was a magazine called Bazaar Magazine and I loved it. It was really weird. I remember Bazaar. And there was a model and I can't remember her name now and she was an amputee and she was like long black hair, little micro fringe and she was so beautiful. And I remember seeing that and just thinking, oh wow, because it was like the first bit of, you know, that sort of, I think the only disability representation we had growing up was like Joey Deacon and we all know how people and

kids felt about Joey Deacon and how, you know, even to this day, like the ableist insult feels like it stemmed from that. So, you know, I think we are starting to see more, you know, more characters and stuff in TV. I think like in Breaking Bad is, I think one of the only incidental disabilities that I can think of where they just, yeah, it was never mentioned. Never mentioned. That was in my head too. I think that was also, sorry,

I didn't mean to interrupt you. What I loved as well in Breaking Bad is that they had, so their elder disabled son, and then they had, I think it was a daughter, much, much younger, and that was never spoken about either, that they had this. and like normally with families on TV it's so identikit of what you see is represented of like this is a family

this is what a family looks like and I just always liked that as well. Yeah they did it really well and I think I just would like to see as opposed to it being focused if we are going to talk, I think it would be great to see disability. So for example, in the new Doctor Who, bit of a Doctor Who nerd, there's an amazing actress called Ruth Madeley who's in a wheelchair and she was in that and they did some absolutely beautiful bits in that. There was one just little mention of that there'd been no ramp put in somewhere so she wouldn't be able to get to this part and it was just small and there was another bit where they showed her standing up because she's an ambulatory wheelchair user and that was

really powerful because often you know if wheelchair users get up from their chairs people are they're faking because people don't realize that you know you don't have to be paralyzed to be in a wheelchair so things like that just showing I think I'd love to see the societal issues that disabled people face sort of woven into a storyline without it being about, oh, this is what your medical thing is, or we're going to have a film about you overcoming your disability or something like that. Just incidents with disability with some realistic social stuff sprinkled in. And I think Sex Education have done it really well recently as well.

And they showed a disabled love story. And I think that was maybe, I'm sure Rosie Jones worked on that with them. And it shows. It shows that a disabled person has worked on that because it just felt really authentic. It didn't feel icky. It was just done really well. And I think the more we kind of see of that, because all of this crap just comes out of people feeling scared of the unknown, scared of saying the wrong thing, scared of putting, you know, their foot in it.

And so then people just end up just doing it so much worse. And I think if we just kind of see it more in our day to day, it becomes less of a like, sort of thing. Yes, no, I completely agree. Actually, I think we have more in our day-to-day, it becomes less of a like sort of thing. Yes, and I completely agree. Actually I think we have more in common than just the fact we've sort of pretty much same age I think because we are, our children span quite a similar range of ages because my youngest is five and my oldest is 20. Oh there you go. So you had your first when you were relatively young.

I was a baby, yes, like 24 which at the time I thought I was like so grown up and together and now I'm just like, oh, you were a sweet little baby, just sort of trying to do your best, but yeah, 24. Did any of your friends have babies at that time or was it kind of you the first one in your group? Yeah, I was the first. I was in a bit of a weird, I was in a bit of a, it wasn't the best relationship,

my first marriage, and I was quite sort of, I didn't have much support really, I was quite sort of isolated. And it's sort of, but with my second, but I did make, I made really good friends through school and things like that, but yeah, I've always just been a bit of an awp. I've always found making friends tricky. I think when you have a tricky time at secondary school, it kind of can set

you up for life really of just being like, oh gosh, and actually sort of met all my really, really good friends later on in my life, sort of in my early 30s. Also, there's times in your life when making friends can feel super awkward. I know that when I had my first baby, I didn't really know anybody else with babies. And then I didn't really know even how to talk to them. If you go to those like parent and baby groups, and then they would all seem to be in these little cliques already to go off and have coffee. And I'd be a bit like, I don't really want to be the sad person that goes, can I come along?

Can I come with you? Can I sit and chat? I think there are times in your life where it is really tricky and you can feel quite self-conscious about it and it's like everybody's already got all their friendship groups and you think, oh, okay, maybe not now then.

So I totally relate to that feeling. Yeah, I think it can be, like I feel like the feeling sort of straight after mum died was really similar in some ways to feeling after sort of first having a baby because it's such a, you sort of look at everybody else and you think, how are you just living your life? Like, I've just had a baby. What do you mean?

I'm a mum now. And it's a real similar feeling of sort of limbo and just a little bit working out who you are with this sort of new thing. Absolutely. Who am I now? What bits of me from before are still relevant? I felt really discombobulated for sure for quite a long time. And did you always want to be a mum? Yes. Yeah. I was a proper sort of loved playing with my dolls and I don't know

that I feel like didn't all sort of, weren't we all just kind of, kind of, I always I'm trying to think now as an adult who's a bit more aware of gender roles and everything else I'm sort of like did I always want to be a mum or was I just told that's what I had to be? But no I was always, whether it's because I'm the youngest of three, but I was always, you know, even as a kid, I'd be the one entertaining the kids, like the younger kids and when my older sister, like she obviously she had kids before me, so I got to be like the cool auntie for years. Oh that's nice.

Oh yeah, I loved that. I'm getting to take my niece is like, I think she's 25 now, I'm taking her to see Taylor Swift. Are you? Yes, I'm flexing my wheelchair, my wheelchair perks, my wheelchair tickets and basically buy one, get one free, it's great. So it's worth not being able to walk really just for that. So yeah, I'm really... A three hour concert.

I've heard nothing but good things about the show, but I just, I can't think of, I've got a really bad attention span, so just like three hours of anything and I'm a bit like, okay, here we go. No, I must like, I like some of her stuff, but I wouldn't, yeah, I wouldn't, I'm not like a mega mega fan. You might turn out being one by the end. This could be it, I could become a true fully fledged Swifty.

I like bedazzle my chair and stuff, but yeah, I don't even know why I was rambling on about my lovely nieces and nephews now. Well I'm not an auntie and I would very much like to be an auntie I think it seems like a lovely a lovely role and when you were having your small ones I'm just trying to get an idea of your relationship with your work as well so if you were you working in counseling when your kids were, your eldest kids were small? No, so when in my early 20s, I'd been sort of, well in my early early 20s, I was like

a barmaid and a DJ at the path. Oh wow, cool. That was like still one of my favorite jobs actually, I love to do that. And then I just wasn't, like my disability really sort of flared up, I wasn't working, just like, yeah, and then had the kids, still wasn't working. Then I split up with my husband and started training to do my counselling. And then I sort of, but then my, they were sort of five and seven, I think then. So I had a counselling practice for a while, private counselling practice, which I really

enjoyed and then I moved into just working in, I used to support adults with lived experience mental health at a college, an adult college, and I used to just get to do pottery and stuff, and it was really fun, and I really enjoyed that. And then when I had sort of Clark, who's my son who's got the same disability as me, I just didn't get, I thought I was going to go straight back into that sort of work and straight back into doing the counseling, but I just couldn't, I just wasn't in the sort of head space to do it at the time. And then, yeah, then roll on however many years

and then just found myself doing this, which has been very unexpected. And how, I mean, it's hard to answer sometimes because family always influences you no matter what, but how significant to how you feel about your disability now do you think it is that your 10-year-old has the same disability? How, say that again. I just, to you, like your relationship with what you're doing and your activism and your pride, because you said, you know, you mentioned you'd had, what was it you said, closeted ableism from

when you were young. Yeah. So how significant is it that one of your children has a disability and has made you have to look at it in a way that you've seen it in a way that has made you appreciate the beauty in there. How significant has that been for you? It's been massive and I've told him that as well and just said you know it's just he just got me to see disability in such a different way and to be able to see it in a neutral way as well. Because, yeah, of course sometimes it brings me challenges, but there's also so much beauty in it as well,

and just the way he sort of sees it. But all of that, my youngest probably doesn't remember me, wouldn't remember me pre sort of using a wheelchair, but for him, when he was younger, he used to say to me and Clark like well I wish I was disabled as well and and then I said well maybe one day babe and that's like the weirdest thing I've ever had to say just to console someone with maybe they will become disabled one day um but that's yeah he has been yeah he's been just a real sort of joy and you

know I'm fully prepared that he starts secondary school next year and I'm like, and I'm having to really not put my own secondary school brings back a lot of yes, I'm like, okay, this might not this might not happen to him. But also, you know, we're prepared if it does. And but you know, you just think, oh, God, I feel like I could go hand the rocks a cradle on somebody who like said anything to him but he's got two older brothers and he handles himself um really well with them he's he's always been very sort of non I was always really like oh please be my friend please like me um and whereas he's like one of those kids that just doesn't really care and it seems to really work in his favor. But yeah, it's lovely. I'm prepared

that it could change when he's a teenager, but it's lovely to see him now just sort of comfortable in his skin. And you know, we give him space to say, you know, what's the shittest thing about being disabled? Because, you know, often again, sometimes parents sort of put this kind of superhero narrative on their disabled kid. Yes. And it can force them to feel like they have to be OK about it. And it's been really important to us that he has the space to also be pissed off about it.

To also hate it if he wants to, to hate being disabled. And we would listen and, you know, make space for all of those those feelings because I know my own journey with it has been ever changing but it for me it feels wild that I am unpicking years of all of this internalized stuff literally I've sort of lived with it for 30 something years and he's getting to just go out there fresh with all of this knowledge and that's like okay that's nice, it's nice to see. Well firstly isn't it so crazy that like and I'm sure I'm exactly that way we all carry so many things from that that bit of our lives it's so significant isn't it you remember all the all the lows of being a teenager they just it's like a little box in your head you can open at any point. But also I was thinking, you know, you've already parented, you know,

or parenting, you've got one you know, he's pretty much out of his teens now because when they get to 19 it's like you're the other side of so much of that really turbulent bit and one is 16. And when you're a teenager, no matter what is going on with you, I you, you go through everything that marks you out, everything that makes you different. And part of the reason it's such a significant time is because you've got this dual instinct of putting away from things, questioning who you are, your family, how you were raised, you suddenly question everything, but you also want to fit in so badly with your peers.

So everything that marks you out. But you've already got two of them, you know, they're on the other side. And I think if there was going to be this hand the rocks, the cradle aspect, I mean, I don't know about you, but I think however you've dealt with, like the first time one of your kids gets a bit bullied

or encounters a mean kid, it like I mean I'm terrible I've like I have to suppress quite a lot because I kind of want to like march to school quite a lot to be honest with you. That's what I mean it's hard isn't it? It does make me rage but yeah they've generally so far sort of so good and they all seem to handle it quite well. Yeah and they're a little tribe as well I mean the little two have got the big two that and I bet they think their big teenage brothers are very glamorous. Oh yeah there's a lot of that and our

eldest is quite you know right right mum right. I'd probably send him down me and Jay said that the other day but I would just send him he can go and deal with like just, yeah, a little threat, a mild threat to a child, not really. Won't be threatening. Not threatening children. Well, that's what my little sister did with me. I used to go and pick her up from school,

and I remember one day there were these two girls that were mean to my sister, and I can't remember their names now. Let's say they were like Emily and Charlotte, or whatever, I don't know. And I went to pick up Martha, and I looked at one of these kids and just stared at her and just shook my head in a really sinister way. And then turned to the other one and went, you too, Emily. But then as I walked away I realised I'd called that one the wrong name, they were actually the other way round.

Oh God. It was like, who is that very confusing elder sibling just like being really menacing for no reason. You lost all your power. It's like if I tell the kids off and then I like say my words wrong and then I know it's game over because they're both giggling. I know. That's it. I have to just go out there and just listening to them laughing behind me. Yeah. Damn. I have to say I'm really enjoying your home Nina. I love your Instagram as well, because I think you and I are both lovers of color. Oh, your house is so beautiful. I was having a little, yeah, it's gorgeous.

Yours is too, it looks amazing. And I know we both like our bright clothing, and I've seen you rock the odd lovely play suits, this kind of thing. I think we could probably, yeah, make a mutual appreciation going on. Oh yeah, definitely. Always obsessed with your eye makeup and just everything.

I can teach you one day if you like. Maybe for your day this week. Oh my god. Go big with the glitter. I did have, when I first booked the tickets I had like four, I was like I'm going to get a black leotard and be jazzy and wear that and then now I'm just like Nina, no Jesus Christ. You're in mourning, be sensible, you're 44, just put something normal on. So yeah, I won't be doing that. Well also with the summer we're having,

it might not be leotard weather, but how do I know? We went to see Harry Styles last year in about a similar time and that was, yeah, just absolutely amazing and the weather was lovely. I literally was listening to your podcast this morning with Anne Twist and it was making me cry loads of it. I was like, oh God, I shouldn't have listened to this right before I've gone on. I was just like, it was really lovely. Well listen I really appreciate you talking to me

not least because you have so much wisdom but also I think I really, I lost my stepdad four years ago and I really, I really really do feel like I can relate to that feeling when you first start interacting with the world again and the world feels very, when you're grieving, I feel like the world feels like it's running at a different rhythm to you. So thank you for talking to me when I know that sometimes you just think, I don't know if that's really the pace I can operate on. And I'm really sorry you lost your mum and it sounds like your relationship with her and the fact that you could all be

around her at that moment, that's always testament to the relationship isn't it? That's testament to all the love that you can be there and just there's nothing more that needs to be said or done you can just be there to support her at that moment. Yeah exactly we literally you know sat around watching daytime soaps like gossiping that was her that was her dream so yeah it's good but thank you you've held such a beautiful space for me today and it's been a really lovely thing to return to so thank you so much. My absolute pleasure and I hope one day we get to meet in person. I would like that very much. If you do come to one of my gigs, the jazzle leotard would be an entirely appropriate wardrobe choice.

Okay, this was really exciting. Absolutely. Get your little jewellery thing, your crystalizer out. I will be there. You won't be able to miss me. Take care, Nina. So nice talking to you. You too. See you later. Bye. Love you, love. Bye. Greetings. I just had a little listen back to when I did my introduction, which was a few days ago.

I'm sorry, I've got a real croaky voice at the moment. I think I've just been burning the candle a little bit. So if it's annoying in your ears, I'm sorry. But I do want to say thank you so much to Nina for talking to me especially when she was grieving not long after she lost her mum and I know that feeling very well after I lost my stepdad so yeah big thanks to her for still allowing me into that that time in her life appreciated yeah what a great conversation and I suppose I don't know if I articulated it well enough at the beginning really, but

I suppose Nina's conversation is about, is largely about how aspects of her disability, some of the things that actually make her disability impact on her, and not actually about her body but about the way the thoughts and the infrastructure for disability as she finds it in her life. So it's more about that really. I think that's it's a sort of slightly nuanced shift but it's really significant. So thank you to her for articulating all of that. And yeah, give her a follow. It's really informative. And it gently educates you about, you know, maybe aspects of life you haven't thought about if maybe you're disabled.

And if you're an able-bodied person, how you might overlook it for disabled people. It's really smart. I'm really sorry. I'm really self-conscious about this stupid voice thing now. I mean, to be honest with you, it's not really a big shock. I've been slightly cruising for a bruising, I've been working hard, and it's all good, and I think I'm just a bit run down. I didn't really acknowledge jet lag when I got back from America, what was it, two weeks

ago now. I just kind of went for it as if it wasn't happening. And I seem to be not getting more than about five hours sleep at the moment at night, which is not really enough. Don't worry, I'm working on it. More beautiful guests coming up for you in the rest of the series, but thank you so much to Nina. Thank you to you for lending me your ears.

Thank you to producer Claire. Thank you to Richard for editing, Ella Mae for the gorgeous artwork. And next week I've got more beautiful people. Yeah, I've got a lovely list. I've got a few that I've already recorded and some more that I'm recording this week. So lots of excitement. And in the meantime, have a nice day. I've actually, so I recorded my hello bit on Thursday, I think it was, and I'm now speaking to you from Sunday. And sun shining. It's a peaceful kind of day. The kids were really physical yesterday

so we've been a bit more lazy today and it feels good. And yeah, I'm going to see my mum later and yeah, hopefully this sore throat will go away. I hope it's not too irritating for you. I'll stop talking just in case it is. See you soon. Lots of love. Have a great week. Bye. Music ACAST powers the world's best podcasts. Here's a show that we recommend. Feeling disconnected in this noisy, over-scheduled world? Well, you're not alone. That's exactly why we're here. I'm Dr. Jodie Carrington, and on my podcast, Unlonely, we're tackling the loneliness epidemic, the most pressing issue of our generation. In each episode, I sit down with the most incredible experts who share vital insights

and critical strategies to help reconnect us all. You see, in the history of the world, we've never been this disconnected. So let's get Unlonely together. Subscribe to Unlonely wherever you get your podcasts. And we can't wait to meet you over there. Acast helps creators launch, grow, and monetize their podcasts everywhere. Acast.com