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'I haven't had a door on my bathroom for years'

The dangers and discomfort of an inaccessible home.

Claire has been waiting for three years for her council to make adaptations to her home so that she can live in comfort, have a family life and keep danger to a minimum. She talks to Nikki Fox and Emma Tracey about the frustration and how it affects her wellbeing as a wheelchair-using person with MS.

Last week, Loose Women's Sophie Morgan shared her thought that Blue Badges could surely become digitised after her car was broken into and her badge stolen. It provoked an unexpectedly unpleasant response and Sophie returns to talk about online hate aimed at disabled women.

And fearless documentary-maker, Livvy Haydock, talks to us about disabled gangsters and her own diagnosis of multiple sclerosis, MS.

Presenters: Nikki Fox and Emma Tracey
Producers: Keiligh Baker, Beth Rose and Emma Tracey
Recorded and mixed by: By Dave O'Neill
Assistant editor: Beth Rose
Editor: Damon Rose

Since the recording, the Royal Borough of Windsor and Maidenhead have responded to the question of why adaptions to Claire's house, featured in the podcast, have not been done three years since applying under Disabled Facilities Grant. They explain residents are at the centre of their decision making processes and they try to assess and complete work as soon as possible but some houses aren't readily adaptable, that engineers need time to explore solutions creatively and that the pandemic has affected some cases.

Find us on Twitter @bbcaccessall
And you can listen to the very latest episode by telling your smart speaker "Ask the BBC for Access All".

Release date:

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36 minutes

Transcript

 

31st March 2023

bbc.co.uk/accessall

Access All – episode 46

Presented by Nikki Fox and Emma Tracey

 

 

NIKKI-           Something happened to me a few days ago, Emma, which I wouldn’t have believed, but it happened.

EMMA-         Okay, what is it?

NIKKI-           So, you know that in the day when I’m 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-         The joystick?

NIKKI-           The joystick, that’s a better word. Thanks, Ems. I was still on maximum speed and it lunged forward. There wasn’t 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’s a sentence I’m never going to say. I must admit at first I did think that I’d broken it. I looked at my sister and I was like, “I think it might be broken”. But it was just bruised, it was just bruised. But I’ve always joked, you know, whenever I’ve 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-         What do you mean, this makes me want to feel like someone’s run…this makes me want something bad to happen to me?

NIKKI-           Yeah, you know, like something excruciatingly embarrassing happens and I’m 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’m trying to be funny.

EMMA-         Is there a lesson from this: don’t leave your wheelchair on top speed?

NIKKI-           It’s don’t leave your wheelchair on top speed. Also I’m going to take the elastic band off and put it on a different setting so it can’t go forward and back.

EMMA-         Okay.

NIKKI-           I got run over by my mum.

EMMA-         How’s the radiator?

NIKKI-           That’s really quite significantly dented.

MUSIC-         Theme music.

NIKKI-           It’s Access All, the BBC’s disability and mental health podcast. We’re here every single week with a different look at what life is like when you are disabled, innit. I’m Nikki Fox and I’m in London.

EMMA-         And I’m Emma Tracey and I’m in Edinburgh.

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

EMMA-         Disabled gangsters.

NIKKI-           And sadly, online hate crime.

EMMA-         We’re on BBC 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-           And then get their dogs to subscribe. Going too far with that one.

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

NIKKI-           Oh yeah.

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

NIKKI-           Yeah, I would. It’s rental health week on the BBC, so we’re 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-         Well, we’re 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-           Yeah.

EMMA-         We’re 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’s like you might be able to get in and out of it if you're a wheelchair user.

NIKKI-           7%, that’s staggering, isn’t it?

EMMA-         7%, really, really low. So, people end up moving a long way from their support system. I’ve 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-           Well, someone who knows all about living in an unsuitable home is Clare. Now, Clare has MS and like many disabled people she’s in social housing. And she’s joining us on the podcast today. Clare, hello. How are you?

CLARE-         Hello, I’m good thank you.

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

CLARE-         I’m in a ground floor maisonette. It’s not wheelchair accessible. I’m in a chair full time and getting in and out of rooms is precarious. My doorframes have taken a real beating. I can’t 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’t actually do a full circle in my electric chair just in one position. I bash all of my white goods. I’ve got scrapes everywhere. It’s a nightmare.

NIKKI-           The impact is actually bigger than I think someone who isn’t disabled would imagine. What impact is all of this having on you, Clare?

CLARE-         [Sighs] Where do I start? It’s 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’s embarrassing for them. So, I hate having visitors, even my kids, I find it really degrading.

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

CLARE-         Yeah, because my legs don’t work, and I have to drag myself into the loo and back. And when you’ve got MS and you’ve got to go, you’ve got to go. A delay can be disastrous. But also the rest of the house just brings me down constantly. I haven’t 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’s the point putting flooring, carpets, laminate, whatever down, when you know that you’re going to have to have chunks cut out of your floors?

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

CLARE-         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’s 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’s the point. And then somebody slapped me metaphorically around the face and said, “This is not you. You need to get on with this”. And since then I have, but it’s hard work. And oh my goodness, trying to get anyone to do anything is like pulling teeth, it is so painful.

NIKKI-           And fighting can be so tiring, can’t it, as well?

CLARE-         And stress really impacts MS.

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

EMMA-         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’re private renting or if you’re renting social housing. And it’s to cover the costs of adaptations like handrails, ramps and bathrooms. It’s usually given out in increments of about five grand, that’s 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’s 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’s going to do the work and how it’s going to happen.

NIKKI-           Clare, you’ve applied for a Disabled Facilities Grant, haven’t you? How is it going?

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

CLARE-         Sorry.

NIKKI-           But it’s just like three and a half…

CLARE-         Sorry.

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

CLARE-         It’s soul destroying.

NIKKI-           What are the hold-ups though, Clare? What’s delaying it so much?

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

CLARE-         Well, it collapses on me. And my legs don’t 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-           Ems, these kinds of waits they’re not unusual are they?

CLARE-         No.

EMMA-         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’re supposed to wait. And nearly a quarter said that the disabled people in their local authority were waiting for over two years.

NIKKI-           Have you ever considered moving, Clare?

CLARE-         I don’t 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’s all my children. And I knew at the time there were no alternative choices.

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

EMMA-         Well, if a Disabled Facilities Grant applicant isn’t happy they can formally complain to their council first. And if there’s no joy there they can take it to the local government ombudsman.

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

CLARE-         Yeah, definitely. Thank you.

NIKKI-           Take care.

EMMA-         We did ask Clare’s council, the Royal Borough of Windsor and Maidenhead for a statement, but at the time of recording we haven’t yet received one.

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

SOPHIE-        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’re worth about 500 quid.

NIKKI-           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’s the exact same thing that happened when Rosie Jones came on, do you remember?

EMMA-         Yeah.

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

NIKKI-           Yeah. And I’ve had it as well in the past. Especially I remember it more so when I first started in TV, probably because it’s a – I’m like Teflon now – but in the beginning when you’re a little bit nervous and it’s 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-         So, you were seeing these things and then having to read stuff about consumer issues?

NIKKI-           Exactly. And I had to say, “Oh Darren’s got in touch to say blah, blah, blah” while underneath they’ve got, ‘Blimey, Nikki’s ugly, isn’t she?’ 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’ve said this before to you and I’ve 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-        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’t repeat. But I’ll read it out a little bit. It says: ‘Hey, c word, stop your whining. Just because you [sic] Blue Badge got stolen doesn’t make you more important than anyone else. For you to be on the news is a, expletive, joke’. And then it says – the worst part for me personally – it says, ‘You should be slapped into permanent disability’. And then it says something at the end which I actually won’t repeat, but it’s sexual threats, which are really harmful and really painful and actually shook me so much I, I didn’t 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’s 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’s obviously off the back of my disabled badge being stolen, so I felt just a bit of a kick me when I’m down moment. But anyway, it'll be fine.

NIKKI-           Oh.

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

NIKKI-           Yeah, it really is. And that, I mean it’s shocking. When she read that out, and I’d 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-         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-           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-         But there were loads of really supportive messages for Sophie as well, weren’t there?

NIKKI-           Yeah, there were, Emma. Invisibly Me – that must be the social media handle – said, ‘Whoever sent that has serious problems. Some pathetic people like to poop all over others just to make themselves feel better. It’s not okay and it’s not something anyone should have to put up with. It’s disgusting and I’m sorry you’ve had to deal with such vile messages’.

EMMA-         And another said, ‘Sophie, I’m disabled and a wheelchair user, and I’m 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’.

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

                       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’s called 1800 Seconds on Autism, and it’s 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-         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’m absolutely delighted that it’s an all autistic team. They’re doing such a wonderful job and nabbing such amazing guests. Let’s listen to a clip of their episode with the amazing Chris Packham:

[Clip]

CHRIS-          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’t 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-           And they also did an episode with [in Australian accent] an Australian actress, Chloé Hayden.

CHLOE-         When I was in Year 8 my English teacher brought my parents in and were like, “Hey, we think there’s something wrong with Chloé”. My parents were like, “Oh her horse probably kicked her”. 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, “Congratulations, it’s an autistic”.

EMMA-         It’s an autistic.

NIKKI-           It’s 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 BBC 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’ve discussed, or if there’s 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 – and Emma. We’re on Twitter @BBCAccessAll, or you can email us accessall@bbc.co.uk. Or you can send us a WhatsApp message, we love them, to 0330 123 9480.

                       She’s known for her podcast smash hits, including Gangster on BBC Sounds, and for her connections and exposés 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-          Hello.

NIKKI-           So nice to have you on.

LIVVY-          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-           Oh Em, did you hear that?

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

NIKKI-           I’m sure a lot of people know Livvy is, but for listeners that don’t, aren’t familiar with her work, we’ve got a little taster clip here of some of the brilliant, brilliant reporting you’ve done:

[Clip]

LIVVY-          How was it living next to Mr Palmer’s house?

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

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

NIKKI-           Livvy, for people that don’t know, can you sum up what you do? And also how did you get involved in the criminal underworld? It’s fascinating.

LIVVY-          Thank you. It’s a hard one to explain really. I’ve 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’d 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-           So, what is the latest gangster series about then, Livvy?

LIVVY-          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’t 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’s the guy who famously melted the Brink’s-Mat gold.

NIKKI-           We’re hearing more and more about that at the moment, aren’t we?

LIVVY-          Yeah, there’s so much. It’s because it’s 40 years since Brink’s-Mat so there’s lots going on around it. but the thing I find exciting about Gangster is we start pretty much with the Brink’s-Mat, and so it’s what happened next. And he’s 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’t know it was from the Brink’s-Mat robbery. And then he’s the one who went on and built a criminal empire.

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

LIVVY-          Well, I hadn’t been well for about, I’d 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’s rheumatoid arthritis, it’s 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’re in lockdown, and a neurologist rang me and she said, “I’m terribly sorry but you’ve got multiple sclerosis”. The crazy thing was, because we’d had this kind of four years of what the hell’s 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’ve 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’t yet. And I think with lockdown and Christmas was approaching, and it was as if I’d been given a grenade by this neurologist, because she said, “Look, someone’s going to contact you within a week, an MS nurse, and we’ll start processing towards treatment and you’ll have a plan”. So, I thought okay great, wait for this person. A week passed, another week passed, and all this time I’m holding this grenade, if you like. And Christmas came round and it exploded and I lost my mind – to put it in a nice way.

NIKKI-           Really?

LIVVY-          Yeah. I think because also by then it’d been two months, and so suddenly we’re at Christmas, and in the meantime I’ve been asked all these questions about things like to do with getting treatment, “Have you had your family yet? Is your family complete?” And I thought hold on, I haven’t even got a boyfriend, like why would that be…? So, it brought up all these issues. And then of course at Christmas I’m 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’re this, you’re this, you’re this. And my dad’s chasing me around the house with his answer to everything is like you should eat something.

NIKKI-           Yeah!

LIVVY-          Trying to feed me a sausage roll, and I’m kicking off, and my niece is running after me going, “What’s wrong? What’s wrong?” 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’s funny, I’ll go through waves of feeling right, I’m cool with it, I know what I’m doing, I understand more about it now. And then suddenly I’ll have a bad day and it brings so many issues up.

EMMA-         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-          I can’t get up. There’s no way I can get up!

EMMA-         And I could hear the producer saying, “Have you got enough layers on?” and it’s really interesting that they left all that in. Was that a little nod to it?

LIVVY-          Do you know what, I don’t think it was a deliberate nod to it. But now you point it out it’s absolutely true, because my biggest thing is on shoots, whether it’s TV, radio or podcasts, doing what I do is you’re hanging around a lot, there’s a lot of time in the dark. Sometimes I’ll be waiting for dealers, I mean, they’re the most unreliable people in the world, and it’s freezing.

NIKKI-           Oh yeah, yeah okay.

LIVVY-          And so I’m the master of layers. But yeah, getting up and sitting on Brighton beach wasn’t the best idea because it’s fine getting down, but getting back up. I’ve got a big bruise here actually from a fall I had the other day.

EMMA-         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-          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’s 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’t 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’t 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, “It took me to become blind before I could see”. And he left the gang life behind.

                       But sickle cell is one I come across quite a lot. I’d 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’s a young lad I know to speak to him when he’s 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’re hot and everything. So, he goes yeah, I’m 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’m always learning. And so many youngsters are looking after parents and things as well. I won’t justify their crimes with it, but having that insight into actually what is pushing them into, I need money, I need money.

NIKKI-           What’s going on in the background, yeah.

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

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

LIVVY-          Oh yeah, totally. I’ve complained a few times because it’s like, you’ve left me out here waiting for you for five hours, my legs hurt. Also I’ve told a few off. But also there’s 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’s not surrounded by other people who have perhaps disabilities, and neither am I, so we talk about that. And it’s quite funny, you go from talking about robberies and things to, “How’s your health? Are you all right? Have you seen your mum?”

NIKKI-           Livvy, it’s been absolute treat chatting to you. You are brilliant and I’ve 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’s brain and Em’s as well.

EMMA-         Absolutely.

LIVVY-          Thank you so much. 

NIKKI-           Thank you for listening. This has been a BBC News production for BBC Sound and BBC 5 Live.

EMMA-         We’ll be back next week when, amongst other things, we’ll be talking about love, chess and teenage arthritis, and whatever’s on the disability news agenda.

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

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

NIKKI-           Yeah, every week.

EMMA-         Every single week.

NIKKI-           Because when I’m working and I can’t listen to the pod I often have a scan of the transcript. Is there enough Nikki in this, is there enough Nikki? I’m joking.

EMMA-         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’t 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-           Perfect. We ain’t got time to talk about this more, Emma, we’ve got to go.

EMMA-         I know.

NIKKI-           Until next week everyone.

EMMA-         Bye.

[Trailer for Americast]

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

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

MALE-           There’s a phrase which has been bouncing around since the Trump presidency, which is LOL, Nothing Matters. And the things that would matter don’t seem to matter anymore.

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

FEMALE-      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-        And of course we’ve also got to mention all the amazing guests and experts that we have on the show helping us understand the stories.

FEMALE-      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-        And Americast of course isn’t just about politics and news, is it? Can we get something in about the more cultural, the social stuff too?

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

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

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

SARAH-        Yeah, well you have just said that.

 

 

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