大象传媒

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鈥檓 assuming that鈥檚 your disability dog?

NIKKI- No, you鈥檇 assume wrong there, Emma. He鈥檚 our rescue dog. I鈥檝e never had an assistance dog. I think I鈥檓 probably too disabled for an assistance dog. I need an actual human, Emma.聽

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

NIKKI- You鈥檙e 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?聽

NIKKI- Not really.

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

NIKKI- No. We鈥檝e 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鈥檙e on the floor. Buddy is the opposite of an assistance dog; he鈥檚 not helping me in any way, Emma.

EMMA- But he sort of understands though, does he? Like he won鈥檛 bring you a ball to throw or anything?聽

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

EMMA- I do.聽

NIKKI- I know.聽

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鈥檓 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鈥檚 not an assistance dog, nor is he a therapy dog.

MUSIC- Theme music.

NIKKI- It鈥檚 Access All, the 大象传媒鈥檚 disability and mental health podcast. I鈥檓 Nikki Fox and I鈥檓 in London.聽

EMMA- Abnd I鈥檓 Emma Tracey in Edinburgh.聽

NIKKI- Coming up:

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

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

EMMA- And make sure that you subscribe to Access All on 大象传媒 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鈥檝e 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鈥檚 big.

EMMA- That is big. It鈥檚 the biggest one that Scope have done so far. They鈥檝e 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.聽

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?聽

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鈥檚 younger people who are more affected by this than older people, so that鈥檚 22% as against 10%.

NIKKI- I feel like I鈥檓 being a bit basic because when we grew up, in the 鈥�80s, it was respectable. The 鈥�80s and 鈥�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鈥檝e got social media now which we didn鈥檛 have when I was growing up. Thank goodness for that.聽

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

NIKKI- I mean, the faking a disability doesn鈥檛 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鈥檝e also got disability specialist and Scope spokesperson Shani Dhanda. Welcome both. I鈥檓 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鈥檝e had was last year I was in the town centre, I鈥檇 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鈥檛 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鈥檛 longer than 45 to 90 seconds.聽

NIKKI- Yeah.

NAOMI- I remember making the decision to not shout back at them because I didn鈥檛 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鈥檝e just got to try and make sure my coffee doesn鈥檛 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鈥檛 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鈥檇 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.聽

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

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鈥檇 be able to get up by myself.聽

EMMA- Have you ever had anything else like that?聽

NAOMI- That鈥檚 the most kind of overt incident I鈥檝e ever had. But there鈥檚 a constant drip-drip of micro aggressions that you just expect to encounter whenever you go out from people assuming that you鈥檙e incapable of doing anything. I鈥檝e had people grab my chair to move me in supermarkets, or people going, 鈥極h no, you can鈥檛 do that by yourself, let me do this for you鈥�. And that鈥檚 quite difficult, but it鈥檚 so constant it鈥檚 just the normal.聽

ADAM- Naomi, so we鈥檙e talking a lot about Disability Pride month at the moment, and I鈥檓 wondering whether these terrible experiences you鈥檝e 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鈥檛 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.聽

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鈥檓 a university student so I鈥檇 like to be able to go out with friends, go and have a drink, lots of things like that.聽

NIKKI- It鈥檚 foam party time now, Naomi. You鈥檝e got to go. You鈥檝e got to do it. You鈥檙e at uni.聽

NAOMI- Yes, it鈥檚 got to be done, hasn鈥檛 it?

EMMA- Did you just say foam party?

NIKKI- listen, that鈥檚 what we did at uni, foam parties.聽

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.聽

NIKKI- Don鈥檛 wear anything white. Naomi, thank you for telling us about those experiences because it can鈥檛 be easy, and I鈥檓 so sorry you鈥檝e had to face that. Stay with us though. I鈥檓 just going to bring in Shani now. Shani is a disability rights activist. Hello Shani. Have you experienced this kind of thing?聽

SHANI- Yes, I鈥檝e 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鈥檓 really sad to say they haven鈥檛 stopped, and I鈥檓 35 years old. So, I鈥檝e 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鈥檓 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.聽

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

SHANI- Do you?聽

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

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

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

EMMA- And Shani you have osteogenesis imperfecta and you鈥檙e a wheelchair user, that鈥檚 right, isn鈥檛 it?聽

SHANI- I鈥檓 not a full-time wheelchair user, no, but I have osteogenesis imperfecta. So, I have a short stature and I鈥檓 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鈥檓 a celebrity. I never used to go up to people and say, 鈥榳hat are you doing?鈥�. 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鈥檝e taken on their camera roll or in their photo album. And you know what? Nobody every does. And what will happen is they鈥檒l start being aggressive to me, because I guess they don鈥檛 expect me to go up to them and question what they鈥檙e doing. I think because I鈥檝e got a short stature it鈥檚 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.聽

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

SHANI- It鈥檚 really sad to see that young people are more impacted. And when we look and break this down it鈥檚 definitely I think the time that we鈥檙e living in. I think we鈥檝e got, society is less accommodating for younger disabled people. When disabled people share their needs they鈥檙e not being believed. They鈥檙e not being believed that they鈥檝e 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鈥檓 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鈥檚 no escape from it sadly. It鈥檚 online and in the physical world as well.聽

NIKKI- Yeah.

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

NAOMI- One of the most comments I get when I鈥檓 out and about is parents with small children, and the parent is kind of going, 鈥榦h my word, there鈥檚 a wheelchair user鈥� they鈥檒l 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鈥檛 need to be that element of shock and almost fear that the child then picks up on.聽

NIKKI- Yeah, I鈥檓 not an HGV, love, it鈥檚 all right, there鈥檚 room.聽

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

NIKKI- Naomi?

NAOMI- One of the best reactions I鈥檝e 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, 鈥淵ou鈥檝e got wheels!鈥�. Which was brilliant. And then he went, 鈥淒o you have a horn?鈥� and I was in my electric wheelchair so I was like, 鈥淵eah, do you give it a go?鈥�. And that鈥檚 one of the best interactions I鈥檝e had. That鈥檚 a completely innocent interaction on his part. He wasn鈥檛 fazed by the disability at all; it was just, you have wheels and that鈥檚 amazing.聽

NIKKI- The curiosity of kids. And that鈥檚 why I thought things were getting better. Listen, we鈥檝e got to leave it there, but it鈥檚 been really fascinating. Naomi, thank you for coming on, because I know you鈥檝e 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.聽

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, accessall@bbc.co.uk. 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.聽

MUSIC- Access All.聽

NIKKI- The heat this week has been intense, hasn鈥檛 it? With temperatures hitting a record 40 degrees in Heathrow, West London, on Tuesday. I鈥檝e got Adam Gabsi here. Now, Adam, you鈥檝e got multiple sclerosis, haven鈥檛 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鈥檛 been able to leave that flat for 12 days, is that right, because of two broken lifts?聽

ADAM- That鈥檚 it.

NIKKI- Hello first of all.

ADAM- Hi.

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

ADAM- You know, I鈥檝e just been trapped here through the heatwave. And my housing association haven鈥檛 been helpful. I鈥檓 not looking for people to look at the situation and say, 鈥榓h bless him, he鈥檚 stuck on the sixth floor鈥�. No, no, just the lifts if I can get in and out that would be lovely, mate. I鈥檝e got things to do, a few friends, it鈥檚 summertime, yeah, so.聽

NIKKI- Adam, sorry, just for the listeners that can鈥檛 see you like I can, you use a wheelchair, is that right?

ADAM- That鈥檚 right.聽

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

ADAM- When the lifts first broke I was downstairs.聽

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

ADAM- That鈥檚 right.

EMMA- 鈥�and not be able to get into your flat?聽

ADAM- Yeah, that鈥檚 right, that鈥檚 right. They had ample warning as well, because there are two lifts here, and one lift hasn鈥檛 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鈥檛 get to my flat. So, it鈥檚 a very simple human right that I鈥檝e been denied, which is terrible. And it took my neighbours to lift me up six floors. It鈥檚 not an easy job. I鈥檓 not the heaviest guy, but I鈥檓 sure it鈥檚 not an easy job to carry anyone up six floors.聽

NIKKI- That must have been scary.

EMMA- But also it mustn鈥檛 feel that nice to be carried?聽

ADAM- It鈥檚 humiliating to be honest, to be in the position where you鈥檙e so dependent.聽

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

ADAM- it鈥檚 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鈥檛 climb 160 stairs; they鈥檒l leave shopping, if I order it, on the ground floor. And I can鈥檛 fly, so if it wasn鈥檛 for my support network, my father, my mother, my girlfriend, listen, I would be absolutely stranded with regards to food.聽

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

ADAM- I鈥檝e been doing music for my whole life. It really is my passion. And if it wasn鈥檛 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.聽

NIKKI- You鈥檝e got an important hospital appointment on Friday. Is it this Friday?聽

ADAM- Yes, it is.聽

EMMA- So, Eddie Nestor from 大象传媒 Radio London, you spoke to him, and they鈥檝e actually been trying to fix your lift?

ADAM- Ever since I had the interview with Eddie Nestor they鈥檝e had the team here all night trying to fix one lift. The 大象传媒 have helped me massively.聽

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

ADAM- There鈥檚 a group of Waking Watch that they鈥檝e 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.聽

NIKKI- How do you feel about that though?聽

ADAM- Even though they鈥檙e good people, I don鈥檛 know if they鈥檙e trained well enough to deal with the situation they鈥檝e been put in. This is the third time this year the lift has been down.聽

NIKKI- Third time?聽

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

NIKKI- The whole of January?聽

ADAM- Yeah, yeah.聽

NIKKI- Could you use the other one?聽

ADAM- No, both lifts.聽

NIKKI- Both lifts were down?聽

ADAM- Yeah. When I say the lifts were down I鈥檓 referring to both lifts.聽

NIKKI- Holy moly.聽

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

NIKKI- No.聽

EMMA- Metropolitan Thames Valley Housing, which is your housing association, Adam, they said they understand the frustration. And they said, 鈥榃e expect one of the lifts to be back in service by next year, and that鈥檚 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鈥�.聽

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

NIKKI- Yes, and let鈥檚 be clear about that: the ground floor accommodation that they offered you, yes, it鈥檚 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鈥檚 not fully accessible?聽

ADAM- Of course, yeah. You know what, I had a friend come here the other day and he said, it鈥檚 the typical argument that I have with people, 鈥淎h all disabled people should I鈥檝e on the ground floor鈥�. And then he looked at the view from my balcony and came back in and was like, 鈥淣o, you know what mate, if you want to live on the sixth floor you should able to live on the sixth floor鈥�. Come on.聽

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

ADAM- 100%. I have to build my own; that鈥檚 how inaccessible they are. I had to make my own space because I couldn鈥檛 find one that could deal with me at all or cater to my needs.聽

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

ADAM- I will do.聽

NIKKI- I鈥檓 so sorry you鈥檝e had to put up with these 12 days.聽

EMMA- Adam, thank you so much.聽

NIKKI- Thank you Adam.

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

MUSIC- Access All with Nikki Fox.聽

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

SAMANTHA- Columanist.聽

NIKKI- And now author.

SAMANTHA- I know.聽

NIKKI- Honestly, this is so exciting. Now, your book You鈥檙e the Best Thing Since Sliced Break.聽

SAMANTHA- I know. It鈥檚 quite lengthy, isn鈥檛 it? But I love it. I think if you鈥檙e going to do it, do it properly.

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

SAMANTHA- Yes.

NIKKI- You were on the One Show I think?聽

SAMANTHA- No, he was on the One Show.聽

NIKKI- He was, yes.聽

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, 鈥淎nd I do truly believe Samantha Renke is the best thing鈥�. 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鈥檚 wonderful.聽

NIKKI- I know, DJ.

SAMANTHA- Wonderful Fat Tony, yeah. A couple of years back Fat Tony called me randomly, 鈥淥h I鈥檝e got George on the phone鈥�. So, Boy George spoke with me and went, 鈥淥h I want to work with you, I want to work with you鈥� and then I didn鈥檛 really hear much from him. And then he reconnected with me, he went, 鈥淚鈥檝e got an album coming out, let鈥檚 go in the studio and do something together鈥�. So, I was like OMG. And then COVID. So, I went back home to shield, like many of us who were more, I鈥檓 going to say more susceptible, not more vulnerable, to COVID.聽

NIKKI- Yes.

SAMANTHA- Boy George was like, 鈥淚 still want you to do it, but why don鈥檛 you just record it on your phone?鈥� and I was like, that鈥檚 naff, I don鈥檛 want to record it on my phone.聽

NIKKI- No, Boy George.聽

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, 鈥淚 wasn鈥檛 expecting that. I need to up my game鈥�.聽

NIKKI- It is, honestly it鈥檚 amazing.聽

EMMA- What鈥檚 the track so that we can all go and鈥�?

SAMANTHA- It鈥檚 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,聽 so you鈥檝e 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, 鈥淟ook, I鈥檓聽 going to be publishing four, five books a year through Happy Place, I love you and I want you to be one of them鈥� 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鈥檚 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.聽

NIKKI- Yeah.聽

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

NIKKI- That鈥檚 really interesting.聽

EMMA- 鈥淵ou鈥檙e more than that, Samantha鈥�, what does that mean?聽

SAMANTHA- I know, exactly, more than that. Well, do you know, I mean for me I love my disability and it鈥檚 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鈥檛 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?聽

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

NIKKI- No, no.

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

SAMANTHA- Yes.

EMMA- Some people talk about their impairment, some people don鈥檛. 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,聽 if they are to me they might be to some people. You鈥檝e got broken legs right now, am I right?聽

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.聽

NIKKI- Sam!

SAMANTHA- They do it very differently, it鈥檚 less invasive now, but it used to be called kebabbing. So, I鈥檝e 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鈥檙e migrating out of my bones they鈥檝e fractured both of my femurs. But because of the metalwork it鈥檚 kind of not really going anywhere.聽

EMMA- Does it hurt when you break your bones?聽

SAMANTHA- Yeah. I get asked that often, and I think I鈥檓 a bit passive aggressive in the book because I鈥檓 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鈥檇 be like, 鈥極h my god, no, no!鈥� and I鈥檓 like, that鈥檚 not going to help because your muscles are going to spasm, it鈥檚 going to tighten around the break, your adrenaline is going to go and it鈥檚 not necessarily going to help you in the long term. Whereas for me I know when I fracture it hurts, because I鈥檝e got nerve endings and I鈥檓 a human with working moving parts.聽

NIKKI- Yeah, yeah.聽

SAMANTHA- However I kind of go right鈥�

NIKKI- Focus.聽

SAMANTHA- 鈥�focus, breathe, focus my breathing. And I do a bit of meditation. And what I try and do as well, particularly if it鈥檚 like a collarbone or an arm, as soon as it fractures you鈥檝e 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.聽

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.聽

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.聽

SAMANTHA- No.聽

NIKKI- I love the girls that I work with, but it鈥檚 that relying on other people. I鈥檝e had to sacrifice good promotions or job opportunities because I haven鈥檛 got the support there. Have you had the same experience?聽

SAMANTHA- Yes.聽

NIKKI- Straight off.聽

SAMANTHA- Yeah. And my health has deteriorated. Obviously I鈥檝e just said I鈥檝e got rods that don鈥檛 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?聽

NIKKI- Succession.聽

SAMANTHA- There we go, get your words out. And that scared the bejesus out of me if I鈥檓 completely honest. I do appreciate having someone with me. But as we all know, and as I鈥檓 finding out myself recently, social care is not free. I鈥檓 now having to pay close to 拢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.聽

NIKKI- Oh no.聽

SAMANTHA- So, I鈥檓 like great, I should have just kept quiet. But I think we don鈥檛 value support workers. We don鈥檛 pay them enough. It鈥檚 not seen as a vocation. I personally would love that to shift. I would love to have 鈥� I call my PA a PA.聽

NIKKI- Me too.聽

SAMANTHA- Because I think that鈥檚 what I prefer.聽

NIKKI- Yeah.聽

SAMANTHA- My mum cares for me; my PA doesn鈥檛 care for me. Someone I employ by the hour doesn鈥檛 care for me. But it鈥檚 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.聽

NIKKI- Yeah.聽

EMMA- Yeah.

SAMANTHA- But I went through a phase of, because I knew that there was such a short demand of carers 鈥� I鈥檓 going to use that term broadly 鈥� 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鈥檇 be screwed.聽

NIKKI- Yeah.聽

EMMA- Ah.聽

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

NIKKI- Yeah.

SAMANTHA- Because I was so petrified because I knew if they didn鈥檛 turn up tomorrow I would miss out on a work opportunity.聽

NIKKI- Yeah, and money.聽

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鈥檚 your message? Put yourself on a pedestal, that鈥檚 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.聽

NIKKI- Oh god Sam.聽

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

NIKKI- I know.聽

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

NIKKI- I am the bee鈥檚 knees, Emma, that鈥檚 what you鈥檝e got to do.聽

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鈥檙e 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鈥檝e got to mention this. You鈥檝e got the book.聽

SAMANTHA- Got the book.聽

NIKKI- Happy Place.聽

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鈥檚 just a happy place to be.

NIKKI- Oh Sam, I adore you.聽

SAMANTHA- I adore you too.聽

NIKKI- You鈥檝e been brilliant.聽

SAMANTHA- Thank you both for having me.聽

NIKKI- You鈥檝e been brilliant.聽

Now, don鈥檛 forget, subscribe to us on 大象传媒 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鈥檓 going to run out of stories soon, Emma.聽

EMMA- I don鈥檛 think you鈥檒l ever run out of stories, Nikki Fox. I don鈥檛 think you鈥檒l ever run out at all.聽

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

EMMA- Bye.聽