‘I was stuck in my flat for 12 days in the searing heat’

EMMA- You know when we have our very important production meetings on a Tuesday?

NIKKI- Yes, I like them.

EMMA- Most people are in the office. You and I are at home.

NIKKI- Yeah.

EMMA- Almost every meeting there is a very large dog who barks. And you say, oh Buddy, oh Buddy, Buddy. I’m assuming that’s your disability dog?

NIKKI- No, you’d assume wrong there, Emma. He’s our rescue dog. I’ve never had an assistance dog. I think I’m probably too disabled for an assistance dog. I need an actual human, Emma. 

EMMA- So, he does not take your socks out of the washing machine? 

NIKKI- You’re joking. Buddy, my goodness.

EMMA- But does he change his behaviour at all around you and your sister as against whoever else is in the house? 

NIKKI- Not really.

EMMA- Or is he more gentle? Or would he even try to help you with stuff even though he’s not an assistance dog?

NIKKI- No. We’ve had a lot of dogs growing up and when they get to a certain age they do tend to kind of adapt. Like they move when they hear the click of the wheelchair so they know, to save getting runover, when you press the start button they get up if they’re on the floor. Buddy is the opposite of an assistance dog; he’s not helping me in any way, Emma.

EMMA- But he sort of understands though, does he? Like he won’t bring you a ball to throw or anything? 

NIKKI- I think you want him to be better than he actually is, Em.

EMMA- I do. 

NIKKI- I know. 

EMMA- I want him to be your special dog.

NIKKI- He is, and I love him for all his ways. When it comes to disability, I’m sorry to burst his bubble, but, you know like brilliant assistance dogs they bring things to you; Buddy does the opposite.

EMMA- Is he a therapy dog? Would Buddy listen to your problems or is he there for you to cuddle and rub and feel not so alone?

NIKKI- Emma! He’s not an assistance dog, nor is he a therapy dog.

MUSIC- Theme music.

NIKKI- It’s Access All, the BBC’s disability and mental health podcast. I’m Nikki Fox and I’m in London. 

EMMA- Abnd I’m Emma Tracey in Edinburgh. 

NIKKI- Coming up:

SAMANTHA- Well, let me get a sledgehammer and see whether breaking your leg will hurt.  

NIKKI- That’s author Samantha Renke. Find out what she’s been up to later on. 

EMMA- And make sure that you subscribe to Access All on BBC Sounds, please.

NIKKI- Now, a new survey from Scope suggests that disabled people are more likely to experience negative attitudes and behaviour if they are young. This surprised me, Emma.

EMMA- Yeah, I was surprised by this too. So, figures that we’ve seen exclusively here at Access All and that have been compiled by the big disability charity, Scope, say that three out of four disabled people have had to deal with unwelcome attitudes and abuse in the last five years. So, just over 4,000 people took part in the study.

NIKKI- That’s big.

EMMA- That is big. It’s the biggest one that Scope have done so far. They’ve found that 96% of those aged between 18 and 34 who reported experiencing negative attitudes were left feeling isolated and lonely. They were also twice as likely to stop socialising as a result compared to over 55s. So, younger people are a lot more likely to be more heavily impacted by it in terms of not going out and about and staying at home and being affected by it mentally. 

NIKKI- I used to give talks in schools, and I always came away from those talks feeling really hopeful for the younger generation because the classes were more mixed, there were disabled people and non-disabled people there. And I left and I was always like, oh the next generation are going to be absolutely fine. And I always thought life would be easier for younger people. So, this is surprising and upsetting. But one thing I want to clarify, Em, what do we exactly mean when we say negative attitudes and behaviour? 

EMMA- It includes everything from being judged as incapable, through to being patronised or discriminated against, and goes all the way up to being verbally abused or worse. On verbal abuse other figures from the survey show that once again it’s younger people who are more affected by this than older people, so that’s 22% as against 10%.

NIKKI- I feel like I’m being a bit basic because when we grew up, in the ‘80s, it was respectable. The ‘80s and ‘90s obviously I would have expected then to have a harder time than I would if I were growing up now. But then I suppose if you think about it we’ve got social media now which we didn’t have when I was growing up. Thank goodness for that. 

EMMA- One in 25 of all those surveyed said that they’d experienced physical abuse. And a quarter said that they’d been accused of faking a disability.

NIKKI- I mean, the faking a disability doesn’t particularly surprise me. But the physical abuse is horrifying, which is probably a good time to bring in our guest today, Emma. We are joined by student, Naomi Baker. Hello Naomi. Now, Naomi is a wheelchair user who has had quite a few of these negative experiences. We’ve also got disability specialist and Scope spokesperson Shani Dhanda. Welcome both. I’m going to start with you, Naomi. Can you first of all tell us about your own experiences?

NAOMI- I think the most overt experience I’ve had was last year I was in the town centre, I’d just got a coffee and was waiting to meet someone. And a group of, I want to say teenagers, young people suddenly surrounded me in my wheelchair and started screaming at me, completely out of nowhere from my perspective. I was just sitting having my coffee. I won’t repeat the language they used but there were threats to tip me out of my wheelchair. And it carried on for what felt like quite a long time, although it probably wasn’t longer than 45 to 90 seconds. 

NIKKI- Yeah.

NAOMI- I remember making the decision to not shout back at them because I didn’t think that that was going to help, and just kind of stayed still and keep eye contact and stared them down almost.

NIKKI- How did you feel in that moment, Naomi? Like what was going through your head?

NAOMI- There was a level of panic of, are they actually about to tip me out of my wheelchair. Because if they try to do that there is nothing I can do to stop them. I’ve just got to try and make sure my coffee doesn’t land on me. But actually a passer-by intervened very quickly and started shouting back at them equally as loudly, and so they kind of moved off to follow him down the street. So, I got home and spoke to my mum about it. I was quite upset by that point. And she phoned the police, who said that they didn’t think it would meet the definition of a hate crime. But they also said that they were fairly sure the same group just before they’d come up to me had in fact physically assaulted another wheelchair user in the station, and that they had tipped someone out of their wheelchair. 

NIKKI- And you think it was because of you were disabled then? 

NAOMI- Yeah, there was kind of an implication that I was faking it. The impression I got was they were almost keen to see if they tipped the wheelchair if I’d be able to get up by myself. 

EMMA- Have you ever had anything else like that? 

NAOMI- That’s the most kind of overt incident I’ve ever had. But there’s a constant drip-drip of micro aggressions that you just expect to encounter whenever you go out from people assuming that you’re incapable of doing anything. I’ve had people grab my chair to move me in supermarkets, or people going, ‘Oh no, you can’t do that by yourself, let me do this for you’. And that’s quite difficult, but it’s so constant it’s just the normal. 

ADAM- Naomi, so we’re talking a lot about Disability Pride month at the moment, and I’m wondering whether these terrible experiences you’ve faced do they chip away at you and the way you feel about yourself as somebody with a disability?

NAOMI- They do, because they diminish your confidence in yourself and your abilities. And they make you much less confident about leaving the house. I mean, the incident in town last year I don’t think I went anywhere by myself for probably a month afterwards. It makes you feel incapable and almost inferior. People treat you as though you're a young child or someone who does not have capacity to make decisions for themselves. 

NIKKI- Has it stopped you socialising, going out doing things that you would?

NAOMI- Yes.

NIKKI- It has?

NAOMI- it makes me much more anxious about going out. I’m a university student so I’d like to be able to go out with friends, go and have a drink, lots of things like that. 

NIKKI- It’s foam party time now, Naomi. You’ve got to go. You’ve got to do it. You’re at uni. 

NAOMI- Yes, it’s got to be done, hasn’t it?

EMMA- Did you just say foam party?

NIKKI- listen, that’s what we did at uni, foam parties. 

EMMA- Do they still do foam parties, Naomi?

NIKKI- Naomi, do they? Tell me they do.

NAOMI- Oh yeah.

NIKKI- They do!

NAOMI- Any foam party you can think of you can probably find. 

NIKKI- Don’t wear anything white. Naomi, thank you for telling us about those experiences because it can’t be easy, and I’m so sorry you’ve had to face that. Stay with us though. I’m just going to bring in Shani now. Shani is a disability rights activist. Hello Shani. Have you experienced this kind of thing? 

SHANI- Yes, I’ve had lots of different negative experiences out in public with strangers. And they did start actually when I was around 16 because that was the age I started going out on my own. And I’m really sad to say they haven’t stopped, and I’m 35 years old. So, I’ve had everything from people asking me whether I really am disabled and whether I should be parking in an accessible bay. By the way I have a short stature, I’m 3ft 10, so perhaps when I sat in a seat you might not be able to tell. But as soon as I get out and hub down from the car people are then pretty shocked and then realise that I actually do have quite a visible condition. 

NIKKI- You know, Shani, I get that quite a lot when I’m sat in the car. 

SHANI- Do you? 

NIKKI- Honestly the worst thing came out of my mouth not long ago, and I wound down the window I was like, I’m disabled, google me. 

SHANI- I love it! I might steal that one, Nikki.

NIKKI- There you go, Shani. You do loads of stuff on TV: I’m disabled, google me, google me. 

EMMA- And Shani you have osteogenesis imperfecta and you’re a wheelchair user, that’s right, isn’t it? 

SHANI- I’m not a full-time wheelchair user, no, but I have osteogenesis imperfecta. So, I have a short stature and I’m essentially the height of a four year old. A lot of people take pictures and videos of me, not in a nice way and not because I’m a celebrity. I never used to go up to people and say, ‘what are you doing?’. This happened a lot actually in lockdown and it really put me off from going out. And when this happens I ask people then to show me the last picture that they’ve taken on their camera roll or in their photo album. And you know what? Nobody every does. And what will happen is they’ll start being aggressive to me, because I guess they don’t expect me to go up to them and question what they’re doing. I think because I’ve got a short stature it’s funny or people think that they can make jokes. All the connotations of Snow White and the Seven Dwarfs and Oompa Loompa I get all of that even now to this day. And it does make me feel really vulnerable. 

NIKKI- Going back to the survey, Shani, why do you think younger people are more impacted? And what can we do?

SHANI- It’s really sad to see that young people are more impacted. And when we look and break this down it’s definitely I think the time that we’re living in. I think we’ve got, society is less accommodating for younger disabled people. When disabled people share their needs they’re not being believed. They’re not being believed that they’ve got a condition or an impairment. And I think perhaps people are expecting them not to need extra support or reasonable adjustments. And Nikki, you touched upon this earlier, I grew up without social media and I’m really glad. But I think that makes it much harder for our younger people, disabled or not. And I think social media can actually be a really negative breeding ground and a negative home for these kind of ableist thoughts, these ableist comments. I get trolled as well regularly online. There’s no escape from it sadly. It’s online and in the physical world as well. 

NIKKI- Yeah.

EMMA- Speaking of solutions, I was talking to my taxi driver this morning and she’s got a disabled daughter who’s got learning disabilities and physical impairments, and I told her what we were doing and she said, “Teach the parents. That’s what needs to change, to educate their children so that they are not staring and staring and staring”. Is there something that parents could do differently? 

NAOMI- One of the most comments I get when I’m out and about is parents with small children, and the parent is kind of going, ‘oh my word, there’s a wheelchair user’ they’ll flatten themselves and their child against the wall as if I need kind of a 6ft ring around me. When actually just treating it as passing by any other person, there doesn’t need to be that element of shock and almost fear that the child then picks up on. 

NIKKI- Yeah, I’m not an HGV, love, it’s all right, there’s room. 

SHANI- But then I think this comes back to how fearful society is about disability. And it’s definitely going to take generational change and much more accurate portrayal of disabled people and our lives and stories. 

NIKKI- Naomi?

NAOMI- One of the best reactions I’ve had was someone saying my wheelchair, was a little boy as I was waiting for a bus, and he came up and kind of looked at me, so I said hello. And he just stood there and went, “You’ve got wheels!”. Which was brilliant. And then he went, “Do you have a horn?” and I was in my electric wheelchair so I was like, “Yeah, do you give it a go?”. And that’s one of the best interactions I’ve had. That’s a completely innocent interaction on his part. He wasn’t fazed by the disability at all; it was just, you have wheels and that’s amazing. 

NIKKI- The curiosity of kids. And that’s why I thought things were getting better. Listen, we’ve got to leave it there, but it’s been really fascinating. Naomi, thank you for coming on, because I know you’ve spoken really personally and beautifully, and I do really, really appreciate it, we both do. And Shani as well, same to you, thank you so, so much. 

Now, remember we want to hear from you too. Does any of this ring true for you? Get in touch with us via email. You can do that by using the email address, [email protected]. Or you can send us a voice note, my particular favourite, on WhatsApp. And you can send that WhatsApp to 0330 123 9480. And if you could do us a favour, could you start the message with the word Access, that would really help us out. 

MUSIC- Access All. 

NIKKI- The heat this week has been intense, hasn’t it? With temperatures hitting a record 40 degrees in Heathrow, West London, on Tuesday. I’ve got Adam Gabsi here. Now, Adam, you’ve got multiple sclerosis, haven’t you? And you live in Harrow, which is just down the road from Heathrow. And you live on the sixth floor in a flat on your own, and you haven’t been able to leave that flat for 12 days, is that right, because of two broken lifts? 

ADAM- That’s it.

NIKKI- Hello first of all.

ADAM- Hi.

NIKKI- And thank you so much for joining me from your flat which you’ve not left. What is going on? 

ADAM- You know, I’ve just been trapped here through the heatwave. And my housing association haven’t been helpful. I’m not looking for people to look at the situation and say, ‘ah bless him, he’s stuck on the sixth floor’. No, no, just the lifts if I can get in and out that would be lovely, mate. I’ve got things to do, a few friends, it’s summertime, yeah, so. 

NIKKI- Adam, sorry, just for the listeners that can’t see you like I can, you use a wheelchair, is that right?

ADAM- That’s right. 

NIKKI- So, there is no way you can get down those stairs without a lift, unless obviously people chuck in your jobs, which you’re not going to do. 

ADAM- When the lifts first broke I was downstairs. 

EMMA- So, did you come home from whenever you were coming home from…

ADAM- That’s right.

EMMA- …and not be able to get into your flat? 

ADAM- Yeah, that’s right, that’s right. They had ample warning as well, because there are two lifts here, and one lift hasn’t been working for weeks and weeks. And the second had broken. And I was outside at the time doing my job helping disabled people in any way that I can. When I got home couldn’t get to my flat. So, it’s a very simple human right that I’ve been denied, which is terrible. And it took my neighbours to lift me up six floors. It’s not an easy job. I’m not the heaviest guy, but I’m sure it’s not an easy job to carry anyone up six floors. 

NIKKI- That must have been scary.

EMMA- But also it mustn’t feel that nice to be carried? 

ADAM- It’s humiliating to be honest, to be in the position where you’re so dependent. 

NIKKI- You’ve been 12 days and counting, how are you coping? How are you getting food? Like the basics, Adam, what are you doing? 

ADAM- it’s been really hot in the last couple of days, to be honest. A friend of mine their mother had multiple sclerosis so they understand what the heat can do to your body, and it generally does shut me down. They carried up an air conditioner for me, because their mother had passed away and left this air conditioner for me, so I feel like she must be watching over me. With regards to shopping companies don’t climb 160 stairs; they’ll leave shopping, if I order it, on the ground floor. And I can’t fly, so if it wasn’t for my support network, my father, my mother, my girlfriend, listen, I would be absolutely stranded with regards to food. 

NIKKI- Have you been working during this time? What have you been doing to pass the time? 

ADAM- I’ve been doing music for my whole life. It really is my passion. And if it wasn’t for me being able to get in the studio and do what I love doing, I think I would have lost the plot a long time ago, to be honest. 

NIKKI- You’ve got an important hospital appointment on Friday. Is it this Friday? 

ADAM- Yes, it is. 

EMMA- So, Eddie Nestor from BBC Radio London, you spoke to him, and they’ve actually been trying to fix your lift?

ADAM- Ever since I had the interview with Eddie Nestor they’ve had the team here all night trying to fix one lift. The BBC have helped me massively. 

EMMA- And if it’s not fixed by tomorrow what’s the plan?

ADAM- There’s a group of Waking Watch that they’ve put here in case of fire. So, there is a team that is walking up and down the stairs, and they do plan to carry me down if the worst comes to the worst. 

NIKKI- How do you feel about that though? 

ADAM- Even though they’re good people, I don’t know if they’re trained well enough to deal with the situation they’ve been put in. This is the third time this year the lift has been down. 

NIKKI- Third time? 

ADAM- Yeah, it was down for the whole of January. 

NIKKI- The whole of January? 

ADAM- Yeah, yeah. 

NIKKI- Could you use the other one? 

ADAM- No, both lifts. 

NIKKI- Both lifts were down? 

ADAM- Yeah. When I say the lifts were down I’m referring to both lifts. 

NIKKI- Holy moly. 

ADAM- I imagine even like elderly people or parents with young children having to…160 steps is not good. 

NIKKI- No. 

EMMA- Metropolitan Thames Valley Housing, which is your housing association, Adam, they said they understand the frustration. And they said, ‘We expect one of the lifts to be back in service by next year, and that’s why the lifts will be replaced this year at no cost to residents. Mr Gabsi has been offered alternative ground floor wheelchair accessible accommodation. But we fully respect his decision to decline that offer’. 

ADAM- They’ve offered me a ground floor property, well that’s brilliant, but is it not my human right to live here, seeing as this has been a ten-year project for me? I’ve had to remove the bath, I’ve made it a wet room; I’ve got a toilet that I can use independently; I’ve obviously built this studio that I’m sitting in right now; my house is decorated. It is totally adapted to my needs. 

NIKKI- Yes, and let’s be clear about that: the ground floor accommodation that they offered you, yes, it’s not the ground floor, but I am guessing that because of the way that accommodation is laid out you are going to need more help because it’s not fully accessible? 

ADAM- Of course, yeah. You know what, I had a friend come here the other day and he said, it’s the typical argument that I have with people, “Ah all disabled people should I’ve on the ground floor”. And then he looked at the view from my balcony and came back in and was like, “No, you know what mate, if you want to live on the sixth floor you should able to live on the sixth floor”. Come on. 

EMMA- And also studios are often not accessible as well, isn’t that right? 

ADAM- 100%. I have to build my own; that’s how inaccessible they are. I had to make my own space because I couldn’t find one that could deal with me at all or cater to my needs. 

NIKKI- Adam, let us know when the lifts are working and you can get out. Take a selfie and send it to us. 

ADAM- I will do. 

NIKKI- I’m so sorry you’ve had to put up with these 12 days. 

EMMA- Adam, thank you so much. 

NIKKI- Thank you Adam.

ADAM- It’s all right. Thanks guys, thank you very much. Nice to meet you all. 

MUSIC- Access All with Nikki Fox. 

NIKKI- Right, now this week’s big interview is with the one, the only, Samantha Renke. I adore her. I’m sorry, I’ve just got to put it out there, she’s a very good friend. She’s also an actor, disability commentator, campaigner, columnist, columanist. 

SAMANTHA- Columanist. 

NIKKI- And now author.

SAMANTHA- I know. 

NIKKI- Honestly, this is so exciting. Now, your book You’re the Best Thing Since Sliced Break. 

SAMANTHA- I know. It’s quite lengthy, isn’t it? But I love it. I think if you’re going to do it, do it properly.

NIKKI- Now, did you do this, because I know you were in Boy George’s video?

SAMANTHA- Yes.

NIKKI- You were on the One Show I think? 

SAMANTHA- No, he was on the One Show. 

NIKKI- He was, yes. 

SAMANTHA- And he was talking about me. So, I was sat, I remember this, I was sat in bed with just my underwear surrounded by my sphynx cats, and all of a sudden Boy George pops on and I hear my name. and he was smiling like a Cheshire cat and he was like, “And I do truly believe Samantha Renke is the best thing”. And I just sat there going, how surreal can my life get. So, I moved to London about ten years ago, and the first three years were pretty much a party haze. And I used to go clubbing and he used to be now and again the resident DJ. And that used to blow my mind, coming from rural Lancashire, now being in London, living my best life, and then not only that, rocking up to a nightclub on a Friday night and bloody Boy George is playing. So, I always wanted to go up to him and be a bit fan girlie, but it just never happened. But clearly he was stalking me on the dancefloor. So, we have a mutual friend, Fat Tony, who’s wonderful. 

NIKKI- I know, DJ.

SAMANTHA- Wonderful Fat Tony, yeah. A couple of years back Fat Tony called me randomly, “Oh I’ve got George on the phone”. So, Boy George spoke with me and went, “Oh I want to work with you, I want to work with you” and then I didn’t really hear much from him. And then he reconnected with me, he went, “I’ve got an album coming out, let’s go in the studio and do something together”. So, I was like OMG. And then COVID. So, I went back home to shield, like many of us who were more, I’m going to say more susceptible, not more vulnerable, to COVID. 

NIKKI- Yes.

SAMANTHA- Boy George was like, “I still want you to do it, but why don’t you just record it on your phone?” and I was like, that’s naff, I don’t want to record it on my phone. 

NIKKI- No, Boy George. 

SAMANTHA- You know what I mean, I wanted to smell him and maybe lick his face. Do you know what I man? I wanted that, I wanted to become his best mate in the recording studio. And then I snapped myself out of it and I was like, right, I got out all my faux fur coats and I created all these characters, like my alter egos. And I sent it to Boy George and his exact words were, “I wasn’t expecting that. I need to up my game”. 

NIKKI- It is, honestly it’s amazing. 

EMMA- What’s the track so that we can all go and…?

SAMANTHA- It’s called You Are the Best Thing Since Sliced Bread. The book is about believing in yourself, having that kind of get-go attitude, having to think about how life changes quite dramatically from one moment to the next. And I think the song was very much that: COVID happened, everything turned upside down, I felt really sorry for myself. And I had to say to myself, get a grip Samantha, you are the best thing since sliced bread,  so you’ve got to nail it. And that was the ethos and the essence of the book. So, when Fearne Cotton approached me and she was like, “Look, I’m  going to be publishing four, five books a year through Happy Place, I love you and I want you to be one of them” first of all you go, you say, yeah. And then you go, ah crap, I need to write a book. And I was really, really worried because Happy Place is a brand, it’s wonderful, but it is about inspiration, it is about that uplifting narrative, which is wonderful. But as you will both know the word inspiration is such a trigger word when we talk about disability. 

NIKKI- Yeah. 

SAMANTHA- And it’s really funny because my disabled friends instantly went, “Oh god, it’s not going to be an inspiration porn book” and then my non-disabled friends were like, “Oh yeah, amazing, but you’re not going to write, it’s not going to be a disability book, is it? Because you’re more than that, Samantha”. And all of a sudden I was like get out of my head, I want it to be me.

NIKKI- That’s really interesting. 

EMMA- “You’re more than that, Samantha”, what does that mean? 

SAMANTHA- I know, exactly, more than that. Well, do you know, I mean for me I love my disability and it’s like if you read the book you recognise that a lot of the positive life-changing moments in my life, the good and the bad, have been a direct result of having brittle bones. And I think why shy away from that big part of my life, because I don’t want to. Being a trustee for the Brittle Bone Society, having operations that were life changing, how people interact with me because of my disability; my career is based on my disability. So, why should I not? 

EMMA- We have no experience of that do we, Nikki, career being based on our disabilities? 

NIKKI- No, no.

EMMA- Can I get a bit weirdly medical model-ly? 

SAMANTHA- Yes.

EMMA- Some people talk about their impairment, some people don’t. But you spoke in your book a lot about osteogenesis imperfecta, brittle bones. And just some of the nitty gritty, some of the nuts and bolts of it are really fascinating to me. So,  if they are to me they might be to some people. You’ve got broken legs right now, am I right? 

SAMANTHA- Yeah. So, when I was younger I had telescopic rods put into my legs. And they often refer to it as kebabbing. So, they literally take your legs out of your body, they chop it up into tiny pieces, and they kebab it, like put it back on. 

NIKKI- Sam!

SAMANTHA- They do it very differently, it’s less invasive now, but it used to be called kebabbing. So, I’ve had all the rods in my legs. And normally if you were to grow at the regular rate that an average person would I would have had them taken out after ten years. However, as they’re migrating out of my bones they’ve fractured both of my femurs. But because of the metalwork it’s kind of not really going anywhere. 

EMMA- Does it hurt when you break your bones? 

SAMANTHA- Yeah. I get asked that often, and I think I’m a bit passive aggressive in the book because I’m like, well let me get a sledgehammer and see whether breaking your leg will hurt. I think people who have got OI, people who have got brittle bones or people who perhaps live with chronic pain, you never get used to it but you learn to not freak out when it happens. So, when I used to go to A&E and other people were there with a broken leg they’d be like, ‘Oh my god, no, no!’ and I’m like, that’s not going to help because your muscles are going to spasm, it’s going to tighten around the break, your adrenaline is going to go and it’s not necessarily going to help you in the long term. Whereas for me I know when I fracture it hurts, because I’ve got nerve endings and I’m a human with working moving parts. 

NIKKI- Yeah, yeah. 

SAMANTHA- However I kind of go right…

NIKKI- Focus. 

SAMANTHA- …focus, breathe, focus my breathing. And I do a bit of meditation. And what I try and do as well, particularly if it’s like a collarbone or an arm, as soon as it fractures you’ve got a couple of seconds before it really hurts. So, as soon as I do it, because you normally hear it, you normally hear the snap, I just grab my arm and put it in a safe hold position. 

NIKKI- I feel a connection to you for many reasons. But one of them is obviously we share the creative, we do a lot of stuff on TV, as well as writing and all the other stuff that you do, and we both need a bit of support to be able to do that. 

SAMANTHA- Yes.

NIKKI- Now, I always say there are many things I like about being disabled.

SAMANTHA- Yes.

NIKKI- But having to need somebody else to help me do my job is not one of them. 

SAMANTHA- No. 

NIKKI- I love the girls that I work with, but it’s that relying on other people. I’ve had to sacrifice good promotions or job opportunities because I haven’t got the support there. Have you had the same experience? 

SAMANTHA- Yes. 

NIKKI- Straight off. 

SAMANTHA- Yeah. And my health has deteriorated. Obviously I’ve just said I’ve got rods that don’t want to be in my body anymore; which I think is really rude. Because I actually battle with anxiety. I had two horrendous falls in quite quick concession. Concession? 

NIKKI- Succession. 

SAMANTHA- There we go, get your words out. And that scared the bejesus out of me if I’m completely honest. I do appreciate having someone with me. But as we all know, and as I’m finding out myself recently, social care is not free. I’m now having to pay close to £600 a month towards my care, which is like 15 hours a month. And that purely came about because I asked for two additional hours of care and support. 

NIKKI- Oh no. 

SAMANTHA- So, I’m like great, I should have just kept quiet. But I think we don’t value support workers. We don’t pay them enough. It’s not seen as a vocation. I personally would love that to shift. I would love to have – I call my PA a PA. 

NIKKI- Me too. 

SAMANTHA- Because I think that’s what I prefer. 

NIKKI- Yeah. 

SAMANTHA- My mum cares for me; my PA doesn’t care for me. Someone I employ by the hour doesn’t care for me. But it’s personal choice of course. When I get the right support and I have someone that sees how the right support benefits me I soar, my career soars, my mental health soars. 

NIKKI- Yeah. 

EMMA- Yeah.

SAMANTHA- But I went through a phase of, because I knew that there was such a short demand of carers – I’m going to use that term broadly – I would put up with a lot of really crappy behaviour, because I was terrified that they knew if they walked out the door I’d be screwed. 

NIKKI- Yeah. 

EMMA- Ah. 

SAMANTHA- So, I used to pussy foot around these people in my own home. 

NIKKI- Yeah.

SAMANTHA- Because I was so petrified because I knew if they didn’t turn up tomorrow I would miss out on a work opportunity. 

NIKKI- Yeah, and money. 

EMMA- What would your message be for young disabled people listening to this who might need to read your book, who you might think might benefit from it? What’s your message? Put yourself on a pedestal, that’s one of the things that I got from it, something like that?

SAMANTHA- Thank you for saying that, because that is absolutely it. Turn inwards and believe in yourself a little bit more. 

NIKKI- Oh god Sam. 

EMMA- How do you do that? Tell me how to do that. 

NIKKI- I know. 

SAMANTHA- You need to say a mantra every day: I am the best thing since sliced bread. 

NIKKI- I am the bee’s knees, Emma, that’s what you’ve got to do. 

EMMA- I absolutely hate cutting bread, so I absolutely agree that sliced bread is a very good thing. You should see my slices of bread; they’re like sort of wedges that you put in the door to keep it open.

NIKKI- And very quickly, what have you got coming up, Sam? We’ve got to mention this. You’ve got the book. 

SAMANTHA- Got the book. 

NIKKI- Happy Place. 

SAMANTHA- On 7th August I will be on the main stage at the Happy Place Festival. So, Happy Place is obviously the brand from Fearne Cotton. She has a holistic wellbeing festival and, do you know what, it’s just a happy place to be.

NIKKI- Oh Sam, I adore you. 

SAMANTHA- I adore you too. 

NIKKI- You’ve been brilliant. 

SAMANTHA- Thank you both for having me. 

NIKKI- You’ve been brilliant. 

Now, don’t forget, subscribe to us on BBC Sounds, and tell your friends about us because they might appreciate this kind of random disability chat week on week maybe. Although I feel I’m going to run out of stories soon, Emma. 

EMMA- I don’t think you’ll ever run out of stories, Nikki Fox. I don’t think you’ll ever run out at all. 

NIKKI- Well, thank you all for listening. Goodbye. 

EMMA- Bye.