大象传媒

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31st March 2023

bbc.co.uk/accessall

Access All 鈥� episode 46

Presented by Nikki Fox and Emma Tracey

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NIKKI-听听听听听听听听听听 Something happened to me a few days ago, Emma, which I wouldn鈥檛 have believed, but it happened.

EMMA-听听听听听听听听 Okay, what is it?

NIKKI-听听听听听听听听听听 So, you know that in the day when I鈥檓 at work I use a mobility scooter, but at home I use my electric wheelchair, the Zippy as I call it. Well, I got off my Zippy and onto my living room chair. I was with my mum and she went to move it out of the way, but something happened and an elastic band got caught on my knob.

EMMA-听听听听听听听听 The joystick?

NIKKI-听听听听听听听听听听 The joystick, that鈥檚 a better word. Thanks, Ems. I was still on maximum speed and it lunged forward. There wasn鈥檛 much space for it to go, so it slammed over my foot into the radiator, taking the radiator off and donking it quite significantly. And the pain was quite astonishing. But yeah, my mum ran over my foot on my wheelchair. I thought that鈥檚 a sentence I鈥檓 never going to say. I must admit at first I did think that I鈥檇 broken it. I looked at my sister and I was like, 鈥淚 think it might be broken鈥�. But it was just bruised, it was just bruised. But I鈥檝e always joked, you know, whenever I鈥檝e been on emails and people have been like, oh this makes me feel like I want to get someone to run me over in my wheelchair; I never thought I would actually get run over in my wheelchair.

EMMA-听听听听听听听听 What do you mean, this makes me want to feel like someone鈥檚 run鈥�this makes me want something bad to happen to me?

NIKKI-听听听听听听听听听听 Yeah, you know, like something excruciatingly embarrassing happens and I鈥檓 like, argh, I wanted to throw myself on the floor and get someone to run me over with my own wheelchair, you know, that kind of thing. I鈥檓 trying to be funny.

EMMA-听听听听听听听听 Is there a lesson from this: don鈥檛 leave your wheelchair on top speed?

NIKKI-听听听听听听听听听听 It鈥檚 don鈥檛 leave your wheelchair on top speed. Also I鈥檓 going to take the elastic band off and put it on a different setting so it can鈥檛 go forward and back.

EMMA-听听听听听听听听 Okay.

NIKKI-听听听听听听听听听听 I got run over by my mum.

EMMA-听听听听听听听听 How鈥檚 the radiator?

NIKKI-听听听听听听听听听听 That鈥檚 really quite significantly dented.

MUSIC-听听听听听听听听 Theme music.

NIKKI-听听听听听听听听听听 It鈥檚 Access All, the 大象传媒鈥檚 disability and mental health podcast. We鈥檙e here every single week with a different look at what life is like when you are disabled, innit. I鈥檓 Nikki Fox and I鈥檓 in London.

EMMA-听听听听听听听听 And I鈥檓 Emma Tracey and I鈥檓 in Edinburgh.

NIKKI-听听听听听听听听听听 Now, this week you may just hear us mention long waits for house adaptations.

EMMA-听听听听听听听听 Disabled gangsters.

NIKKI-听听听听听听听听听听 And sadly, online hate crime.

EMMA-听听听听听听听听 We鈥檙e on 大象传媒 Sounds and wherever you get your podcasts, so search for Access All and subscribe, and then get your mate to subscribe, and then get your mates to get their mates to subscribe.

NIKKI-听听听听听听听听听听 And then get their dogs to subscribe. Going too far with that one.

EMMA-听听听听听听听听 Maybe. I think you should get your postie to subscribe as well.

NIKKI-听听听听听听听听听听 Oh yeah.

EMMA-听听听听听听听听 They must listen to a lot of podcasts going round the houses.

NIKKI-听听听听听听听听听听 Yeah, I would. It鈥檚 rental health week on the 大象传媒, so we鈥檙e discussing the issues disabled people face when renting. Now, the number of people who rent a pad is rising. Prices are going up and the cost of living crisis makes everything harder to afford. But why is it so difficult for disabled people? Emma, give us the skinny.

EMMA-听听听听听听听听 Well, we鈥檙e actually less likely to own our own homes as disabled people. I think you and I can think of lots and lots of reasons for that.

NIKKI-听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听 We鈥檙e more likely to rely on benefits, low employment of disabled people etc, etc. Only 7% of homes in England have any accessibility at all. So, that鈥檚 like you might be able to get in and out of it if you're a wheelchair user.

NIKKI-听听听听听听听听听听 7%, that鈥檚 staggering, isn鈥檛 it?

EMMA-听听听听听听听听 7%, really, really low. So, people end up moving a long way from their support system. I鈥檝e heard of a guy who moved from Somerset to the northeast of England. And then Haventec housing charity say that 400,000 wheelchair users are actually in unsuitable homes.

NIKKI-听听听听听听听听听听 Well, someone who knows all about living in an unsuitable home is Clare. Now, Clare has MS and like many disabled people she鈥檚 in social housing. And she鈥檚 joining us on the podcast today. Clare, hello. How are you?

CLARE-听听听听听听听听 Hello, I鈥檓 good thank you.

NIKKI-听听听听听听听听听听 Thank you so much for coming on to talk about this, Clare. What is your current housing situation? Describe it to me.

CLARE-听听听听听听听听 I鈥檓 in a ground floor maisonette. It鈥檚 not wheelchair accessible. I鈥檓 in a chair full time and getting in and out of rooms is precarious. My doorframes have taken a real beating. I can鈥檛 get in and out of my bathroom in a wheelchair. I have to park it at the door and use a rollator to get to the loo and back. My kitchen is so tiny that I can鈥檛 actually do a full circle in my electric chair just in one position. I bash all of my white goods. I鈥檝e got scrapes everywhere. It鈥檚 a nightmare.

NIKKI-听听听听听听听听听听 The impact is actually bigger than I think someone who isn鈥檛 disabled would imagine. What impact is all of this having on you, Clare?

CLARE-听听听听听听听听 [Sighs] Where do I start? It鈥檚 impacted my mental health and my physical health. The housing association took away my bathroom door so that I could get in and out of the bathroom in my walker, and we had to put up a curtain across the bathroom door. That means that everybody who visits my home has to take a pee behind the curtain, which is embarrassing for me and it鈥檚 embarrassing for them. So, I hate having visitors, even my kids, I find it really degrading.

NIKKI-听听听听听听听听听听 And for you Clare as well 鈥� do you mind me asking this actually 鈥� is it precarious for you to get in on your rollator? Obviously being majoritively a wheelchair user.

CLARE-听听听听听听听听 Yeah, because my legs don鈥檛 work, and I have to drag myself into the loo and back. And when you鈥檝e got MS and you鈥檝e got to go, you鈥檝e got to go. A delay can be disastrous. But also the rest of the house just brings me down constantly. I haven鈥檛 been able to have flooring put down since I moved in, in June 2019, because I knew that there were going to need to be alterations. And what鈥檚 the point putting flooring, carpets, laminate, whatever down, when you know that you鈥檙e going to have to have chunks cut out of your floors?

EMMA-听听听听听听听听 And can you get in and out of your house, Clare?

CLARE-听听听听听听听听 Yes. Well, I can be pushed in and out in my wheelchair. But to get myself out in a self-propelling chair no, because my arms would get stuck between the chair and the doorframe. I hit a really low point a year and a half, two years ago and kind of thought okay, it鈥檚 just not going to happen, this is my lot, and stopped bugging the hell out of my local authority and the housing association because I just thought what鈥檚 the point. And then somebody slapped me metaphorically around the face and said, 鈥淭his is not you. You need to get on with this鈥�. And since then I have, but it鈥檚 hard work. And oh my goodness, trying to get anyone to do anything is like pulling teeth, it is so painful.

NIKKI-听听听听听听听听听听 And fighting can be so tiring, can鈥檛 it, as well?

CLARE-听听听听听听听听 And stress really impacts MS.

NIKKI-听听听听听听听听听听 I want to come to Emma again, because if somebody has to rent an unsuitable property because there鈥檚 nothing else, or if they become disabled while they鈥檙e renting, what happens if you do need adaptations?

EMMA-听听听听听听听听 Nikki, there is the DFG, which is the Disabled Facilities Grant, and you can apply for it through your council. Home owners can get it; actually 60% of the grants given out are to home owners. But you can also get it if you鈥檙e private renting or if you鈥檙e renting social housing. And it鈥檚 to cover the costs of adaptations like handrails, ramps and bathrooms. It鈥檚 usually given out in increments of about five grand, that鈥檚 the usual amount, but it can go up to 30 grand. And councils do have the power to move that limit up, which is good because it鈥檚 been 30 grand since 2008. So, there are some hoops to go through to get it: you have to get assessed and then you fill in a form, and then they have to figure out who鈥檚 going to do the work and how it鈥檚 going to happen.

NIKKI-听听听听听听听听听听 Clare, you鈥檝e applied for a Disabled Facilities Grant, haven鈥檛 you? How is it going?

CLARE-听听听听听听听听 I applied in December 2019. Accepted I think February, March 2020 just as COVID hit. I have been trawling through process for the last three and a half years.

NIKKI-听听听听听听听听听听 Clare, your face, and I can see you on the TV screen.

CLARE-听听听听听听听听 Sorry.

NIKKI-听听听听听听听听听听 But it鈥檚 just like three and a half鈥�

CLARE-听听听听听听听听 Sorry.

NIKKI-听听听听听听听听听听 No, I can imagine it must be so frustrating for you.

CLARE-听听听听听听听听 It鈥檚 soul destroying.

NIKKI-听听听听听听听听听听 What are the hold-ups though, Clare? What鈥檚 delaying it so much?

CLARE-听听听听听听听听 Pass. I have no idea. Well, COVID was a great excuse. And then I think cost is a big consideration. And people not being able to make up their minds.

EMMA-听听听听听听听听 Is that on the type of work that needs doing? And what work are you looking to have done? Is it a wet room? Is it a better ramp?

CLARE-听听听听听听听听 Wider doorways front, back and interior. Also a wet room. I have a bath with one of those electronic bath lifts that I have to try and drag myself onto.

NIKKI-听听听听听听听听听听 I fell headfirst into a bath using one of those. They are lethal.

CLARE-听听听听听听听听 Well, it collapses on me. And my legs don鈥檛 work so when it collapses I have to try and get myself out of the bath with my two arms and nothing else. So, wet room, also a new kitchen.

NIKKI-听听听听听听听听听听 Ems, these kinds of waits they鈥檙e not unusual are they?

CLARE-听听听听听听听听 No.

EMMA-听听听听听听听听 Nope. Leonard Cheshire found in 2020 that two-thirds of councils had disabled people waiting over the 12 months, which is supposed to be the longest you鈥檙e supposed to wait. And nearly a quarter said that the disabled people in their local authority were waiting for over two years.

NIKKI-听听听听听听听听听听 Have you ever considered moving, Clare?

CLARE-听听听听听听听听 I don鈥檛 want to move. It was suggested last year. I briefly agreed. Then we had a family conference and we went no, because my support network is my family. They live less than half a mile down the road from me, that鈥檚 all my children. And I knew at the time there were no alternative choices.

NIKKI-听听听听听听听听听听 Emma, is there anything Clare can do to move things forward?

EMMA-听听听听听听听听 Well, if a Disabled Facilities Grant applicant isn鈥檛 happy they can formally complain to their council first. And if there鈥檚 no joy there they can take it to the local government ombudsman.

NIKKI-听听听听听听听听听听 Clare, we could talk about this for a very, very long time but we鈥檝e sadly run out of time. But I really do appreciate you coming on to talk about this, and I鈥檓 so sorry that you鈥檙e in this position, and I really, really hope that things move forward quickly for you. And will you keep in contact with us?

CLARE-听听听听听听听听 Yeah, definitely. Thank you.

NIKKI-听听听听听听听听听听 Take care.

EMMA-听听听听听听听听 We did ask Clare鈥檚 council, the Royal Borough of Windsor and Maidenhead for a statement, but at the time of recording we haven鈥檛 yet received one.

NIKKI-听听听听听听听听听听 Ems, if you remember we had Sophie Morgan on last week 鈥� because sometimes it can all be a blur. But she was talking about her Blue Badge being stolen.

SOPHIE-听听听听听听听 Why? Why am I dependent as a human being on a little plastic card? And why are they so valuable? I think somebody said they resell for like, they鈥檙e worth about 500 quid.

NIKKI-听听听听听听听听听听 So, that was a clip of Sophie talking about her situation. But, Emma, after our podcast went out she was subjected to some absolutely horrific abuse online. It鈥檚 the exact same thing that happened when Rosie Jones came on, do you remember?

EMMA-听听听听听听听听 Yeah.

NIKKI-听听听听听听听听听听 And she spoke so honestly about the online abuse that she received, and then got online abuse for talking to us about the online abuse.

EMMA-听听听听听听听听 I mean, we know from experience, Nikki, that disabled people do experience horrendous online abuse, just for being disabled women.

NIKKI-听听听听听听听听听听 Yeah. And I鈥檝e had it as well in the past. Especially I remember it more so when I first started in TV, probably because it鈥檚 a 鈥� I鈥檓 like Teflon now 鈥� but in the beginning when you鈥檙e a little bit nervous and it鈥檚 all new, I just remember it was how I looked and being disabled the two things. And also I used to get them, remember, because I was the social media person on Watchdog so I was going through the tweets while we were live on air, because I had to read them back.

EMMA-听听听听听听听听 So, you were seeing these things and then having to read stuff about consumer issues?

NIKKI-听听听听听听听听听听 Exactly. And I had to say, 鈥淥h Darren鈥檚 got in touch to say blah, blah, blah鈥� while underneath they鈥檝e got, 鈥楤limey, Nikki鈥檚 ugly, isn鈥檛 she?鈥� And it was immediately shocking. And then it stays with you for a while and then you start to get a grip of it and you think no, hang on a minute. But I do notice, and again I鈥檝e said this before to you and I鈥檝e said to Rosie, I do think disabled women on TV get it way more than disabled men on TV, way more. Enough about me. You checked in on Sophie after she got this abuse, after appearing on the podcast last week, and she sent us this voice note:

SOPHIE-听听听听听听听 I got a number of messages from people, but one really stood out and it was shocking. It came into my inbox via my website, and much of it I can鈥檛 repeat. But I鈥檒l read it out a little bit. It says: 鈥楬ey, c word, stop your whining. Just because you [sic] Blue Badge got stolen doesn鈥檛 make you more important than anyone else. For you to be on the news is a, expletive, joke鈥�. And then it says 鈥� the worst part for me personally 鈥� it says, 鈥榊ou should be slapped into permanent disability鈥�. And then it says something at the end which I actually won鈥檛 repeat, but it鈥檚 sexual threats, which are really harmful and really painful and actually shook me so much I, I didn鈥檛 really know how to take it. I get a lot of ableism on my platform, I also get misogyny. I think the combination of the two is what really upsets me. And it鈥檚 just horrendous as a disabled person to get that kind of vitriol, to be on the receiving end of that kind of hate. So, yeah. Anyway it was really sad because it鈥檚 obviously off the back of my disabled badge being stolen, so I felt just a bit of a kick me when I鈥檓 down moment. But anyway, it'll be fine.

NIKKI-听听听听听听听听听听 Oh.

EMMA-听听听听听听听听 Do you know hearing it in Sophie鈥檚 voice, I saw it on social media, we鈥檝e talked about it a lot, hearing her speak about it and sort of unpack what it鈥檚 meant for her and how she feels about it, it鈥檚 very emotional actually.

NIKKI-听听听听听听听听听听 Yeah, it really is. And that, I mean it鈥檚 shocking. When she read that out, and I鈥檇 seen it and already read it, but when she read it out it still shocks me to the core. Like, surely the police can do something about that kind of abuse? Can anything be done?

EMMA-听听听听听听听听 Well, first of all during the pandemic online disability hate crime rose by 52%, and that was Leonard Cheshire charity looking at police data. The Crown Prosecution Service says that trolling which involves sending abusive and hurtful messages online can be prosecuted under the Malicious Communication Act. When it comes to sentencing disability can be taken into account as an aggravating factor.

NIKKI-听听听听听听听听听听 Yeah, and if that disability tag stays all the way through the court procedure then an uplift can be applied and somebody can get a longer sentence.

EMMA-听听听听听听听听 But there were loads of really supportive messages for Sophie as well, weren鈥檛 there?

NIKKI-听听听听听听听听听听 Yeah, there were, Emma. Invisibly Me 鈥� that must be the social media handle 鈥� said, 鈥榃hoever sent that has serious problems. Some pathetic people like to poop all over others just to make themselves feel better. It鈥檚 not okay and it鈥檚 not something anyone should have to put up with. It鈥檚 disgusting and I鈥檓 sorry you鈥檝e had to deal with such vile messages鈥�.

EMMA-听听听听听听听听 And another said, 鈥楽ophie, I鈥檓 disabled and a wheelchair user, and I鈥檓 shocked at this. I really think the police should investigate this. We are with you and we need you to carry on doing what you do. You are amazing鈥�.

NIKKI-听听听听听听听听听听 And we all think that too, Sophie. Everyone on Access All thinks you are amazing.

听听听听听听听听听听听听听听听听听听听听听听 Another podcast has launched which we thought might be of interest to our listeners. Not that we want you to leave us or anything. It鈥檚 called 1800 Seconds on Autism, and it鈥檚 back, produced and presented by an entirely autistic team. And I was listening this morning on my way to work and I was hooked.

EMMA-听听听听听听听听 I used to work on that podcast. I was the token non-autistic person in the room. It was really, really good fun and I鈥檓 absolutely delighted that it鈥檚 an all autistic team. They鈥檙e doing such a wonderful job and nabbing such amazing guests. Let鈥檚 listen to a clip of their episode with the amazing Chris Packham:

[Clip]

CHRIS-听听听听听听听听听 Neurological diversity in humans has proved to be advantageous. There have been times of course where people who think differently have prospered, and as a response our species has also prospered. Is my dog autistic? I won鈥檛 be able to tell you that. The fact that I have two dogs and they express completely different personalities and that impacts significantly on how they interact with their world suggests to me that there are clearly neurological differences in my two dogs.

NIKKI-听听听听听听听听听听 And they also did an episode with [in Australian accent] an Australian actress, Chlo茅 Hayden.

CHLOE-听听听听听听听听 When I was in Year 8 my English teacher brought my parents in and were like, 鈥淗ey, we think there鈥檚 something wrong with Chlo茅鈥�. My parents were like, 鈥淥h her horse probably kicked her鈥�. So, they were initially testing me for brain damage. I did CT scans and MRI scans and they obviously found nothing. And then I went to a psychologist for six weeks and at the end of it they were like, 鈥淐ongratulations, it鈥檚 an autistic鈥�.

EMMA-听听听听听听听听 It鈥檚 an autistic.

NIKKI-听听听听听听听听听听 It鈥檚 an autistic, I love that. It is such a good listen. Definitely, definitely worth listening to with some really great guests. You can find all the episodes now on 大象传媒 Sounds. You just have to search for 1800 Seconds, which is what I did this morning.

Now, as ever we want to hear from you. Give us your thoughts and opinions on the show, the topics we鈥檝e discussed, or if there鈥檚 anything you really want to talk to us about just let us know. I mean, the more obscure and rudey-dudey the better for me 鈥� and Emma. We鈥檙e on Twitter @大象传媒AccessAll, or you can email us accessall@bbc.co.uk. Or you can send us a WhatsApp message, we love them, to 0330 123 9480.

听听听听听听听听听听听听听听听听听听听听听听 She鈥檚 known for her podcast smash hits, including Gangster on 大象传媒 Sounds, and for her connections and expos茅s of some of the most notorious criminals in the underworld. But investigative journalist, Livvy Haydock, had a shock closer to home in 2020 when she was diagnosed with multiple sclerosis, or MS, in her mid-30s. Having infiltrated kidnap gangs across Britain and investigated child soldiers in the Congo, Livvy has joined us from the safety of her own home today via Zoom. And Emma and I are so excited. Hello Livvy.

LIVVY-听听听听听听听听听 Hello.

NIKKI-听听听听听听听听听听 So nice to have you on.

LIVVY-听听听听听听听听听 Thank you for having me on. I listen to your podcast loads. It actually makes me do more cleaning because I have to finish or start another one, and then the bathroom can do with some more cleaning!

NIKKI-听听听听听听听听听听 Oh Em, did you hear that?

EMMA-听听听听听听听听 I did. I love it. I really love to hear how people listen and where they listen. I think that鈥檚 the great thing about podcasts, you could be doing literally anything.

NIKKI-听听听听听听听听听听 I鈥檓 sure a lot of people know Livvy is, but for listeners that don鈥檛, aren鈥檛 familiar with her work, we鈥檝e got a little taster clip here of some of the brilliant, brilliant reporting you鈥檝e done:

[Clip]

LIVVY-听听听听听听听听听 How was it living next to Mr Palmer鈥檚 house?

FEMALE-听听听听听 I mean, we had a bomb go off in their garage [explosion], which was quite frightening.

LIVVY-听听听听听听听听听 [Rock music] This is the explosive story of John Goldfinger Palmer.

NIKKI-听听听听听听听听听听 Livvy, for people that don鈥檛 know, can you sum up what you do? And also how did you get involved in the criminal underworld? It鈥檚 fascinating.

LIVVY-听听听听听听听听听 Thank you. It鈥檚 a hard one to explain really. I鈥檝e always had a mad sort of interest in crime and especially gangs. I mean, I often say Tupac, I was an absolute love fan of Tupac, and through listening to him you end up listening to violence and gangs. And I want to understand it, and then ultimately he was the ultimate mystery, so I started reading up on that. And no one was ever done for it and there have been so many suggestions as to who did it, so that fascinated me. And of course the gangs, and I鈥檇 had dreams of going to these places they all talked about in hip-hop, and so going to the Hood and stuff like that. I was really lucky I managed to turn my interest into my career. And I used to go to a lot of unlicensed fight nights which I chose to film, and got talking to people there. And I think because my face was about that certainly helped my first sort of navigating my way into people who might not normally talk to the media.

NIKKI-听听听听听听听听听听 So, what is the latest gangster series about then, Livvy?

LIVVY-听听听听听听听听听 So, the latest one is Gangster: The Story of John Palmer. And John Palmer he was known as Goldfinger. He was this kind of wheeler dealer from Birmingham. He couldn鈥檛 read or write, bless him, and yet he went on to become as rich as the Queen. So, we document his life from day one, where he grew up. Met one of the most amazing people who speaks on it is one of his former primary school friends, and she stuck up for him a lot because he got bullied. And it just presents you I think with so much more about the context of a criminal. And we document his rise. He鈥檚 the guy who famously melted the Brink鈥檚-Mat gold.

NIKKI-听听听听听听听听听听 We鈥檙e hearing more and more about that at the moment, aren鈥檛 we?

LIVVY-听听听听听听听听听 Yeah, there鈥檚 so much. It鈥檚 because it鈥檚 40 years since Brink鈥檚-Mat so there鈥檚 lots going on around it. but the thing I find exciting about Gangster is we start pretty much with the Brink鈥檚-Mat, and so it鈥檚 what happened next. And he鈥檚 the only guy he gets acquitted for it, even though he did melt down the gold, and they knew he melted down the gold, but he claimed he didn鈥檛 know it was from the Brink鈥檚-Mat robbery. And then he鈥檚 the one who went on and built a criminal empire.

NIKKI-听听听听听听听听听听 Now, moving away from gangs and your amazing career 鈥� although I do want to come back to it as well because it鈥檚 part of this story 鈥� but 2020, we mentioned at the top, was a difficult time for you because you were diagnosed with MS. And we鈥檙e in the middle of a global pandemic. How did that all come about?

LIVVY-听听听听听听听听听 Well, I hadn鈥檛 been well for about, I鈥檇 come back from the Philippines about four years previous and there was something really wrong with my legs, and they diagnosed me with all sorts of different things, I had a crazy list of medications and things like that. Eventually they said, oh it鈥檚 rheumatoid arthritis, it鈥檚 a form of arthritis, and nothing seemed to make a difference. I was having other issues as well. and finally I had a lumbar puncture and I was told this will rule out MS. And I thought okay, fine, do it. Not a very pleasant experience. I went through it, and then I was due to go back to the hospital, by now we鈥檙e in lockdown, and a neurologist rang me and she said, 鈥淚鈥檓 terribly sorry but you鈥檝e got multiple sclerosis鈥�. The crazy thing was, because we鈥檇 had this kind of four years of what the hell鈥檚 going on, and finally I had a diagnosis so it was like, wow great. In my mind, I sort of rang my mum and I was almost jubilant about it because it's like, we鈥檝e got a diagnosis, yay. And her reaction I was disappointed, I thought why are you acting like that. And the same with some of my mates as well, they were like wow, they sort of reacted to it, but I hadn鈥檛 yet. And I think with lockdown and Christmas was approaching, and it was as if I鈥檇 been given a grenade by this neurologist, because she said, 鈥淟ook, someone鈥檚 going to contact you within a week, an MS nurse, and we鈥檒l start processing towards treatment and you鈥檒l have a plan鈥�. So, I thought okay great, wait for this person. A week passed, another week passed, and all this time I鈥檓 holding this grenade, if you like. And Christmas came round and it exploded and I lost my mind 鈥� to put it in a nice way.

NIKKI-听听听听听听听听听听 Really?

LIVVY-听听听听听听听听听 Yeah. I think because also by then it鈥檇 been two months, and so suddenly we鈥檙e at Christmas, and in the meantime I鈥檝e been asked all these questions about things like to do with getting treatment, 鈥淗ave you had your family yet? Is your family complete?鈥� And I thought hold on, I haven鈥檛 even got a boyfriend, like why would that be鈥�? So, it brought up all these issues. And then of course at Christmas I鈥檓 there with my family and their kids and things like that and it just triggered me I think. And a minor argument just caused me to literally, it was like something out of EastEnders, you鈥檙e this, you鈥檙e this, you鈥檙e this. And my dad鈥檚 chasing me around the house with his answer to everything is like you should eat something.

NIKKI-听听听听听听听听听听 Yeah!

LIVVY-听听听听听听听听听 Trying to feed me a sausage roll, and I鈥檓 kicking off, and my niece is running after me going, 鈥淲hat鈥檚 wrong? What鈥檚 wrong?鈥� She was about four. And I feel awful about it because these are people who care most and have been the most supportive, but I attacked them. And that was me, that was that grenade I think going off. It鈥檚 funny, I鈥檒l go through waves of feeling right, I鈥檓 cool with it, I know what I鈥檓 doing, I understand more about it now. And then suddenly I鈥檒l have a bad day and it brings so many issues up.

EMMA-听听听听听听听听 I was just wondering if you have to do anything differently within your work? I was listening to a File on Four that you did. I knew that you had MS at that stage, I could hear you getting up on Brighton beach, getting off the pebbles:

[Clip]

LIVVY-听听听听听听听听听 I can鈥檛 get up. There鈥檚 no way I can get up!

EMMA-听听听听听听听听 And I could hear the producer saying, 鈥淗ave you got enough layers on?鈥� and it鈥檚 really interesting that they left all that in. Was that a little nod to it?

LIVVY-听听听听听听听听听 Do you know what, I don鈥檛 think it was a deliberate nod to it. But now you point it out it鈥檚 absolutely true, because my biggest thing is on shoots, whether it鈥檚 TV, radio or podcasts, doing what I do is you鈥檙e hanging around a lot, there鈥檚 a lot of time in the dark. Sometimes I鈥檒l be waiting for dealers, I mean, they鈥檙e the most unreliable people in the world, and it鈥檚 freezing.

NIKKI-听听听听听听听听听听 Oh yeah, yeah okay.

LIVVY-听听听听听听听听听 And so I鈥檓 the master of layers. But yeah, getting up and sitting on Brighton beach wasn鈥檛 the best idea because it鈥檚 fine getting down, but getting back up. I鈥檝e got a big bruise here actually from a fall I had the other day.

EMMA-听听听听听听听听 I loved it. I loved hearing it. You know I bring everything back to disability, right, this is my thing. Criminals they have a hard life sometimes, and lots of things going on that bring them to that world, do you find that there are a lot of disabled criminals?

LIVVY-听听听听听听听听听 Do you know what through my career, yes. There are, just like in the real world, criminals have disabilities too. And one of my favourite ones, I must say he鈥檚 actually in the States, but he is a reformed gang member. He had I think it was something like 30 drug houses across the Dallas Fort Worth metroplex at his peak, and that was when he was about 21. But he got set up and his own gang turned on him and they shot him in the head. And the bullet went straight through both of his optic nerves and they left him to die. But he didn鈥檛 die. He somehow managed to get up, blind, he thought he was dead, and now is completely blind. But the guy he became like a fixer for me. So, without telling the office where I was working, I didn鈥檛 say he was a blind guy, because he was my guide and led us into all sorts of difficult situations, but he was like a human Satnav. And he said something that was pretty powerful, he said, 鈥淚t took me to become blind before I could see鈥�. And he left the gang life behind.

听听听听听听听听听听听听听听听听听听听听听听 But sickle cell is one I come across quite a lot. I鈥檇 heard about sickle cell but I think I was pretty sort of ignorant to what was involved and the realities of living life with sickle cell. And there鈥檚 a young lad I know to speak to him when he鈥檚 not in hospital is a rarity. And he even actually had an incident where a rival gang, when he was much more active, they did a honeytrap situation. So, he suddenly got these messages online through Instagram saying you鈥檙e hot and everything. So, he goes yeah, I鈥檓 in the hospital, come and see me. And it was a honeytrap so actually the rival gang went to see him in the hospital and attacked him there, which is outrageous. So, yeah I鈥檓 always learning. And so many youngsters are looking after parents and things as well. I won鈥檛 justify their crimes with it, but having that insight into actually what is pushing them into, I need money, I need money.

NIKKI-听听听听听听听听听听 What鈥檚 going on in the background, yeah.

LIVVY-听听听听听听听听听 It gives you so much more insight, yeah. And I wish we could explore a lot more of those issues.

EMMA-听听听听听听听听 Would you ever confide in any of them about your situation?

LIVVY-听听听听听听听听听 Oh yeah, totally. I鈥檝e complained a few times because it鈥檚 like, you鈥檝e left me out here waiting for you for five hours, my legs hurt. Also I鈥檝e told a few off. But also there鈥檚 a gentleman I know who spent an awful lot of time in prison and actually felt off a prison bunk and caused horrendous injuries to his back, and he has ongoing trouble from that and the injuries he got. But we talk quite a lot, and we sort of get the giggles about things, because you can relate so much and it is just refreshing. And I think for him I was refreshing, because he鈥檚 not surrounded by other people who have perhaps disabilities, and neither am I, so we talk about that. And it鈥檚 quite funny, you go from talking about robberies and things to, 鈥淗ow鈥檚 your health? Are you all right? Have you seen your mum?鈥�

NIKKI-听听听听听听听听听听 Livvy, it鈥檚 been absolute treat chatting to you. You are brilliant and I鈥檝e loved this, so thank you so much for coming on. And if you ever need to chitchat to two professional disableds you can definitely pick this old disabled bird鈥檚 brain and Em鈥檚 as well.

EMMA-听听听听听听听听 Absolutely.

LIVVY-听听听听听听听听听 Thank you so much.听

NIKKI-听听听听听听听听听听 Thank you for listening. This has been a 大象传媒 News production for 大象传媒 Sound and 大象传媒 5 Live.

EMMA-听听听听听听听听 We鈥檒l be back next week when, amongst other things, we鈥檒l be talking about love, chess and teenage arthritis, and whatever鈥檚 on the disability news agenda.

NIKKI-听听听听听听听听听听 Yeah. So, mail us if you want to talk about something in particular. Our address is accessall@bbc.co.uk, or听 you can find us on Twitter.

EMMA-听听听听听听听听 And a quick google will help you find the transcript of our programme. We do a full transcript of every single episode.

NIKKI-听听听听听听听听听听 Yeah, every week.

EMMA-听听听听听听听听 Every single week.

NIKKI-听听听听听听听听听听 Because when I鈥檓 working and I can鈥檛 listen to the pod I often have a scan of the transcript. Is there enough Nikki in this, is there enough Nikki? I鈥檓 joking.

EMMA-听听听听听听听听 Talking about 1800 Seconds on Autism we used to have a lot of people who would read the transcript of the podcast because listening to that sort of audio didn鈥檛 work for them, but they really wanted to know what was happening and who was speaking and what they were saying, so it was actually quite a common thing for people to do.

NIKKI-听听听听听听听听听听 Perfect. We ain鈥檛 got time to talk about this more, Emma, we鈥檝e got to go.

EMMA-听听听听听听听听 I know.

NIKKI-听听听听听听听听听听 Until next week everyone.

EMMA-听听听听听听听听 Bye.

[Trailer for Americast]

JUSTIN-听听听听听听听 So, Sarah, we鈥檝e been asked to put together a trailer for Americast. What do you think we should put in?

SARAH-听听听听听听听 Well is it too obvious to just say we鈥檒l be covering all the bigger stories that are coming out of America?

MALE-听听听听听听听听听听 There鈥檚 a phrase which has been bouncing around since the Trump presidency, which is LOL, Nothing Matters. And the things that would matter don鈥檛 seem to matter anymore.

JUSTIN-听听听听听听听 I think that works but it鈥檚, well it鈥檚 not just that, is it? We need to talk as well about the undercover voters investigation, what鈥檚 happening online, what everyone鈥檚 getting in their social media feeds.

FEMALE-听听听听听 What they allow us to see is what someone who has a specific set of views or is from a specific demographic or a specific place might be seeing on their feeds.

SARAH-听听听听听听听 And of course we鈥檝e also got to mention all the amazing guests and experts that we have on the show helping us understand the stories.

FEMALE-听听听听听 This is a great talking point for him in the court of public opinion, but it is not going to go very far in a court of law.

JUSTIN-听听听听听听听 And Americast of course isn鈥檛 just about politics and news, is it? Can we get something in about the more cultural, the social stuff too?

FEMALE-听听听听听 It kind of is in keeping with the conversations that we鈥檙e having in this country about race and colonialism and the legacy of those things.

SARAH-听听听听听听听 Yeah, as long as you include that I think that about covers what we do.

JUSTIN-听听听听听听听 And then all I need to say at the end is: Americast is a podcast from 大象传媒 News, and you can find it on 大象传媒 Sounds.

SARAH-听听听听听听听 Yeah, well you have just said that.

听

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