Â鶹ԼÅÄ

2nd September 2022

bbc.co.uk/accessall

Access All – episode 16

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Presented by Nikki Fox and Emma Tracey

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EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý There’s like a beach five minutes’ walk from my house.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh wow.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý And when I was in Ireland it was really hot and we were swimming in the lake. So, when we came back we were like, we have water right beside us, why don’t we swim. So, I have started swimming in the sea.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh!

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Yeah, in the sea. I always thought it would be really, really cold, that my teeth would be chattering, but I absolutely love it. I can walk there in my towel cape thing. There’s no steps and hand rails, and it’s really blindy-friendly, and it’s really social. I go to when I’m out of my depth and then I turn around and I swim back. And there is loads of seaweed.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Sea sounds] Can you hear this?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý I can. It’s making me want to go there right now.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s so nice.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý I know. But there’s seaweed and there’s rocks to contend with.

HUSBAND-ÌýÌý Enjoy. I’ll see you in a moment.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Oh, there’s my husband. This is a video of me getting into the water.

HUSBAND-ÌýÌý Keep going. It’ll all get wet. Well done.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, I love your hubby.

HUSBAND-ÌýÌý Keep floating. Nice one. I’ll see you in a second.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Yeah, because there’s no people around just to worry about, and because I always have somebody with me who has my back. I also bring a little float with me, I tie it around my waist, so that if I did get lost or out of my depth I could just rely on the float for a bit until I figured it out, or someone came and got me.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I would love to swim in the sea, and I was weighing up the idea of wild swimming. Not as in just finding somewhere and just going for it, because I know the dangers of that, but going to a place that does wild swimming. There is a place near me actually. But I love swimming, and I’m good in my own way, but I’m not strong enough I think now unfortunately. I think back in the day I would have been.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Yeah, there’s no steps into the sea. If it’s high tide the sea’s right beside where you’re getting ready and I think…

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý There are stones though. That’s a bit problematic, isn’t it? Were there stones where you were?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý I mean, I’m not going to say there were no stones because that would be lying.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We’ll find somewhere. We should do an Access All outing. Let’s all go swimming.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Let’s go sea swimming.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý How many disabled people have we got working on the sea?

MUSIC-ÌýÌýÌýÌýÌýÌýÌýÌý Theme music.

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

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

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And coming up later:

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý There’s a sense of responsibility on my little shoulders.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That’s Rosie Jones. She’s an author, presenter; she’s basically the hardest working disabled person in showbiz.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý And make sure you subscribe to Access All on Â鶹ԼÅÄ Sounds.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, I couldn’t live and work unless I had somebody to help me, and I know you couldn’t either, could you, Em?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý No, I absolutely couldn’t.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But it seems that finding those people to help support us in everyday life is becoming harder and harder, and almost impossible. Crossbench member of the House of Lords, Baroness Jane Campbell, has told Access All she fears she and many other disabled people, like me and you Emma, could be forced back into living in instructional settings if the severe shortage in personal assistants, or PAs, isn’t solved. Now, she’s talking about care homes, community living, that kind of thing. The Baroness isn’t feeling too cracking at the moment but she sent me a text from hospital saying, ‘Most of us escaped from them in the 1970s to live independent lives. We don’t want to go back’.

Many disabled people employ PAs using social care or private funds so that they can live and often work independently with the support they need. A recent survey by the local government authority described the shortage as severe, and said part of that was down to the impact of Brexit. And it’s a problem people are talking about all over social media. The Baroness is also having her own difficulties recruiting at the moment. In her message to us here at Access All she went on to say, ‘We need workers from Europe to be able to return to this country to make up the shortage of personal assistants’. She also said that if all disabled people ended up living in a community she bagsied living next door to me. But seriously, let’s get an idea of the scale of the problem.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Now, we’re joined by Anna Severo. Have I pronounced that right, Anna?

ANNA-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, that’s right.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Now, Anna you’re a wheelchair user with an energy impairment. And you should have 35 hours of PA time, haven’t you? But you’ve had nothing for weeks.

ANNA-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I usually have two, sometimes three PAs, so I’d have somebody six days a week and one spread out across the week. But my last PA left at the beginning of June and I’ve just found it impossible to recruit at the moment. I’ve never known it to be this hard. I’ve had PAs for about ten years, you have to sift through a lot of applications; but at the moment I’m lucky if I get one or two a week. And then what I’m finding is people aren’t actually interested in the role when I follow with them, or they even accept the job and then don’t turn up on the first day. It just has felt like such hard work.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Anna, do you mind me asking what you use PAs for?

ANNA-ÌýÌýÌýÌýÌýÌýÌýÌýÌý They’re sort of my hands in a way. There are a lot of things that I do in my day-to-day life that are just ordinary stuff that we all do: they assist me in washing my hair and drying my hair and things like that; or if I’m out and about they’ll open the door that I can’t open because it’s too heavy; they’ll chop vegetables so I can have my dinner in the evening. When it’s working well I almost don’t notice, obviously I know they’re there, it’s seamless. It’s just me getting on with my daily life. I know I’m very lucky, I can still get out of bed, I can still eat. I know for some disabled people it’s not an option to not have a PA and they’d have to find some other solution. But it does mean that I’m having a shower once a week at the moment, and that’s not ideal. But wet wipes and dry shampoo get you so far, but it’s not what you want in life.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Can I say, you look very hygienic on this call?

ANNA-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you. I did actually wash my hair for this occasion.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Thank you for spending all of that energy on us, Anna. It’s really, really appreciated. But you’re off this week as well, it’s useful to say, so you were able to kind of store up some energy for it.

ANNA-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes. I only work part time just to try and manage my health and my condition.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Which is in itself a difficult balance. Do you need to use PAs for work as well, Anna?

ANNA-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes. So, before the pandemic I was probably travelling to London or Manchester and places twice a week. At the moment it’s probably once or twice a month. But ideally I would have a PA that would travel with me, would stay in the hotel overnight, would come to meetings with me, assist me with my case, it’s that kind of thing. And I’ve actually ended up having to have colleagues meet me at train stations to get me from the train station to a hotel with my case, open the door into a hotel room – because they’re always really heavy because they’re fire doors, even though it’s a disabled room.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What emotional impact does it have on you?

ANNA-ÌýÌýÌýÌýÌýÌýÌýÌýÌý In one way I think I’m quite good, I think a lot of us as disabled people are pretty resilient. We’re quite good at finding solutions.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

ANNA-ÌýÌýÌýÌýÌýÌýÌýÌýÌý And I’ve sort of got into camping out survival mode. So, in one way I don’t sit and think, oh I’ve only gone out once this week, and I really wish I could have done this, this and this. I’ve almost taken those options off the table. I’m in a kind of temporary life situation, getting through this current, I don’t want to call it crisis, but this current thing. But I think one of the hardest things about it is it feels a bit like a sort of rejection: you’re putting yourself out there all the time, you’re putting your advert out, you’re sharing quite personal information about what you need, you’re interviewing people and then they don’t turn up or they change their mind, and you sort of start again, you get your hopes up, you think oh okay, great, this person seems lovely. So, I suppose it’s kind of that up and down sort of thing.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, I hear you.

ANNA-ÌýÌýÌýÌýÌýÌýÌýÌýÌý And when I thought I had a PA it was such a relief. I thought oh, I’ll be able to do that again, oh I can do that, I can sort that out, just things I’d stopped doing. And I think that puts people off using direct payments and PAs. I’m really passionate about self-directed support, I’m really passionate about disabled people and older people and people with learning disabilities and mental health challenges having that choice and control over who is in your home, when they come, who they are. But I hear from a lot of people that they just don’t want the burden of becoming an employer and having the hassle and the lack of support. I think there needs to be much better support for people to employ those PAs.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And you take on all that responsibility, the payroll, the hours, the timesheets, and you are very much out on your own. There’s not a great deal. Say, someone like me, I need someone to give me a hand in the morning getting out of bed to put my splints on and stuff, if my PA didn’t turn up I wouldn’t be able to get out of bed. So, it’s like what do you do? You don’t have agency back-up either.

ANNA-ÌýÌýÌýÌýÌýÌýÌýÌýÌý And without that support our lives become very, very small. And I have considered do I go back to an agency just for the meantime, and I’m really trying to resist that because I never knew who was coming, they come at different times, they very much come to do stuff to me rather than me just living my life. So, I’d rather avoid it, but it may come to that.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, we’reÌý joined by – I love Katy – it’s Katy Etherington. I’ve met Katy before because we’ve covered this story for Â鶹ԼÅÄ News some time ago. Obviously the situation seems to be getting even worse since when we met. Katy is the founder of a site called PA Pool. It’s a kind of dating site, isn’t it Katy?

KATY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You’re matching disabled people with personal assistants. And you’ve got about 20,000 users, haven’t you?

KATY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, it’s over 22,000 now across the UK.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Wow. I was going to say, how’s business going. Booming, Katy?

KATY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, it sounds like it’s booming, but I’ve definitely noticed a massive drop in the number of PAs joining the site in particular, and actually an increase in the amount of PA users, so disabled people or elderly people, people with mental health challenges joining the site as well. So, at the moment the demand outstrips what’s available.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý In Baroness Campbell’s message, Katy, she said we need workers from Europe to be able to return to the country to make up the shortage of personal assistants. Is the shortage down to Brexit in your opinion?

KATY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý In my opinion absolutely yes.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Because you’ve got all the figures of people that join and everything, haven’t you?

KATY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý How can you say that so confidently?

KATY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý When people join PA Pool they put their nationality in, they put where they live, so I know that the amount of people coming from Europe has dropped off completely. In fact they’re not coming anymore. And I’m even getting emails on a weekly basis from people saying, can you sponsor us. Unfortunately it’s not something that PA Pool has the legal allowance to do, like agencies do.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Because that’s the tricky thing as well, isn’t it, and you’ll probably explain this better than me, Katy. But a company can sponsor somebody who’s coming over to help with care. But a private employer who needs a personal assistant cannot do that.

KATY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Absolutely yeah. For some strange reason the government decided that private employers weren’t able to do the kind of process of sponsorship. They are just so suited to the role of PA, they are just brilliant.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý So, why are they suited? Can we talk a wee bit about the job? Because some European PAs used to commute, isn’t that right?

KATY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Absolutely. I mean, it was prefect. It was actually more cost effective I think sometimes to commute from Europe to the UK than it is to travel across the country in the UK. And obviously costs of living are far higher here. So, for Europeans they would come over for a couple of weeks or a month and then fly back home to their family.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý People in the UK might not necessarily want to do the different hours, like the nights and the weekends and stuff, as you are finding, Nikki. And the wages as well; we’ve seen people say that they’ve left the PA job to go and work in a coffee house as a barista or as a dog walker because they earn the same or more.

KATY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Exactly. And you can get £9 an hour for working at Tesco’s and there’s no bum wiping involved, I mean it’s a no-brainer, isn’t it, really. I think we need to encourage a different kind of mindset in terms of what a PA does, because people understand the role of something like social care and what a carer does, but I think the side of a personal assistant and all the exciting things, as Anna was saying earlier, it’s not just about personal care, it’s not just about helping someone get up in the morning; it could be going on a four-month cruise around the world, which is what I did with my PA. I mean, where do you get the chance to do that in another job and get paid for it?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, Katie, I’m looking for a job as a PA. I can’t do anything but we can have lots of fun. Be my friend.

KATY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’d love to go away with you, Nikki. I also think there’s always that association of long hours and low pay. But if you work as a private PA you can actually be really well paid. You can earn up to £250 a day.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The pay can be a problem as well because local authorities will set the budgets. If you’re lucky enough to work in a job where you can afford to top up yourself you can do that, probably on the quiet, but you can do it.

KATY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s very, very varied.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It depends if you’ve got the resources and the energy and everything to fight your case.

KATY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And to basically go to your local authority with a huge kind of PowerPoint presentation as to the local jobs on offer in your local area and why you need to pay, say, £15 an hour rather than £9 an hour, because basically you’d have nobody and you’d be stuck in bed.

We put Baroness Campbell’s statement to the Department of Health and Social Care and they got back to us saying, ‘We’re working to grow the adult social care workforce and are investing £500 million to train and develop the existing workforce to bolster recruitment and retention, including of personal assistants. We have also delivered a national recruitment campaign highlighting different adult social care roles, with planning for the next campaign underway’. What do you reckon to that, Katy?

KATY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, I still question whether the government actually understand what a personal assistant is and what they do. Obviously they have quite a big handle on what general social care is, but I checked out their website which is promoting social care, and checked out the personal assistant section, and I don’t think that recruitment is going to be working very well at the moment in terms of personal assistants. PAs support us in more ways than just personal care, coming in and out, helping us out of bed. We need to inspire people to become PAs. It is an inspirational job; you get to do things that you never would normally.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, guys this has been so insightful, and I hope a lot of people have got a lot out of this. So,Ìý thank you so much for joining us.

KATY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I made it out of the hospital. I’ve survived. I’m in my car now, just about to leave. But it actually went really well.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, there you go, Emma, that was my week.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Ah.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Sounding relieved that I’ve just got out of hospital. I’ve got nothing else to give.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Well, I don’t know, I think being in a hospital appointment for how many hours and coming back out and doing your job, I think that’s pretty cool, and I think it’s worth talking about.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Ah!

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Do you mind me asking what the appointment was for, or is that too personal?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý No, not at all, not at all. I think you know, Emma, I don’t know whether I’ve told you, but I’ve got endometriosis and something called adenomyosis – I don’t know if I’ve pronounced that right.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý What does that mean?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s just I get a lot of pain during my cycle. It’s very heavy, uncontrollable, very difficult to work. It’s like Stranger Things up there, Emma, I’m telling you.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Oh, we’re not going to talk about Kate Bush again.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, can we? No, we’re not.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý We can talk about one sort of bush but not maybe the other Bush. Sorry.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, that was good, that was good. So, I’ve tried a contraceptive pill; that didn’t work unfortunately. So, the next option is to try what they call a Mirena coil. The reason I was quite relieved is because when it comes to having the very important smear test or anything to do with that particular area I’ve always found it quite difficult because of my disability. Our local GP doesn’t have an adjustable bed or stirrups, and I’ve found that very difficult. So, I’ve had a lot of very lengthy kind of painful smear tests in the past. Now, smear tests aren’t painful, we should all go and get our smear tests, it’s incredibly important. It was just painful for me because I couldn’t get in the right position. The poor nurses were sweating. I mean, they were lovely, they were doing their best, but they were like, ‘Please let me never have to do you another smear test ever’.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý I know, and then you’re lying there going sorry, sorry, when it’s not your fault.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You do, yeah. And you get pillows, I had lovely Libby with me or whoever I was working with, and we were putting pillows up behind my back and under my bum, but it was still just very tricky, really, really tricky. And I do understand why some disabled people would be a little put off having those kinds of appointments, because not all surgeries are set up. But I went to a hospital to get this done because I thought there’s no way I can get this done at the local GP surgery. So, I went to the hospital, I had to wait a very, very long time for the appointment for this. I got onto the bed, it was adjustable, the stirrups were great, it was fine this time, the doctor had absolutely no problem whatsoever. She fitted the coil, she did the smear test, she found a polyp, she got rid of that for me. Is it a polyp? I still don’t really know what a polyp is.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Is it a little growth?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, a little growth, I think so. So, it was a slightly longer appointment than I was imagining. But I got it done.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Can I ask my favourite question that I always ask? It’s not my favourite question but it’s always my burning…

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Is my dog a support dog?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý No, the other thing. Is endometriosis and boob cysts are they anything to do with your is it spinal muscular atrophy, your impairment?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Muscular dystrophy, Emma!

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý You see, that’s how much I don’t think of you as disabled!

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That’s how much you pay attention.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Your disability does not define you. I don’t even remember what your disability is.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý All right, love, I’ll let you have that one. I’ll let you have that one, just this week. No, it’s got nothing to do with it. But it’s been a right eye-opener.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý If that’s something that you have trouble with it or that you’ve figured out some amazing strategies around do get in touch with us, accessall@bbc.co.uk. And I absolutely do not know the WhatsApp number, sorry.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay, so it’s 0330 123 9480. I’d like to say I plucked that out of my head, but the wizard that is Dave in the studio just said it in my ear.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý We love to hear your experiences. It’s all good us talking about ours, but we’re two 40-something women working for the Â鶹ԼÅÄ. You tell us what’s happening with you.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Did you know we’re on 5 Live as well?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý As a podcast. That’s really exciting.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And you know the cow bungalow.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý My Helen, she’s a lovely lady, she said oh, ‘I stayed up and I heard your voice one night’. 5 Live she was listening to.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Someone else was listening to us on 5 Live, and that’s Suzanne’s husband.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh yes, so she caught up last Monday morning and wrote to tell us about a recent holiday to Spain with a now defunct airline. She had some trouble on the way out, but here’s what happened when boarding the return flight: she says, ‘The Spanish assistance men, one small, one large – I like the detail there; thank you for that Suzanne – tried to get me into the window seat. Now, while doing so ÌýI was almost half undressed by them – I hear you, the same thing has happened to me and my sister – much to the merriment of the other passengers. They couldn’t quite get me into the seat, and so dumped me on top of the seatbelt and then just left. My partner tried to dress me to cover up my embarrassment. He also had to hold me up straight for the whole flight in a terribly uncomfortable position, and I would have fallen on top of him had he not done so’. She tried all avenues to complain, with no joy, but was told the front seats can never be used for disabled people. The one thing I can tell you is that when I flew on my family holiday this year my sister and I, who we’re both disabled, we did prebook the front seats and nobody told us that that was illegal.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Now, Rosie also emailed us, and she says that she cannot find a hotel in London with a profiling bed. And that’s a bed that’s variously adjustable, isn’t it Nikki?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It is.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý For the back and head and knees.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’m trying to get one at the moment for the cow bungalow, but they cost a fortune. They’re the ones they raise up really high, so if you need support while you’re in bed somebody can help you. The front goes up, the legs go up. They’re brilliant. I absolutely love mine.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý I stuck ‘what is a profiling bed?’ into my search engine earlier and it was like 3,000 some hundred, or 2,000 some hundred for the bed, and it just looked extortionate to me. But sure, isn’t everything disability related?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh everything.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý And that’s what she was saying, she was saying she can hire a profiling bed for a hotel, they will let her do that, but that’s really expensive hiring as well. And do you know what, she said she can get self-catering accommodation, but she doesn’t want to do the meal planning, the washing, the cleaning. Her husband’s got a brain injury, they live together, they do all that when they’re at home; why should they have to do that just because he’s disabled and why should they have to do that when they go on holiday?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, I’ve never found one in a hotel.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý No, this is what she’s saying. So, if anybody knows of any hotel in London – because obviously one wants to come to London, and do what we often do, go on a bit of a holiday to London – do you know a hotel with a profiling bed? Rosie would be in there straightaway.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý She’d be on it like a bonnet. Just going back very quickly to the extra costs. I was totalling up – the cow bungalow, I mean honestly, how much more can I talk about it?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý No, this is important. I think this is really good because you’re doing it right now, you’re looking at all the extra things.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I added up, and I’m not asking for the world, I need a raised shower seat, a raised toilet seat, and a profile bed, and you’re looking at 15,000.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý That is a lot of money! You could go on a serious, serious holiday with that. You could pay a lot of energy bills with that.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’ve potentially underestimated that as well. It’s really expensive. I need a new scooter, to get a car you need a hoist – the list goes on. There you go, it’s expensive being disabled, people.

MUSIC-ÌýÌýÌýÌýÌýÌýÌýÌý Access All with Nikki Fox.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý She’s a comedian and she’s a TV presenter, a twice-published author, and Emma and I are so excited because today we are joined by the one, the only Rosie Jones. Rosie Jones is in the house.

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Hello. How are you?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So good for seeing you.

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I feel like I need to explain my voice, not disabled part, but it’s a little bit deep and husky. Hello.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And why’s it so deep and husky?

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I’ve been in Edinburgh. I drunk all the alcohol, I was screaming my head off, and now I’ve ruined it. but I think it makes me sound quite…

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Sexy.

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý …sexy.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, I’m with you. Sexy. But that’s it, okay, you’ve been in Edinburgh. This is the thing, Rosie Jones, you are one of the busiest women. And I work quite hard, but in no way do as much as you do, and I’m permanently knackerooed, I mean wiped out. I have to spend Sunday with a blanket and a hot water bottle and my legs up elevated.

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I need to learn the word no. Because I have had a quite quick rise to fame or whatever.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Fame, Rosie Jones, fame.

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. And I’ve been riding that wave for three years. And I think as a disabled person there’s not a lot of us out there in the media, so I’ve been very aware that I need to say yeah, yeah, yeah, I’ll do that, I’ll do that. And I’ve been running off adrenaline. And what the bottom line is I bloody love my job, but yeah, I’m at a point now where I am very tired. But it’s so hard, I just see all the people coming up to me and saying thank you for what you’re doing for disabled people, and speaking out. And there’s a sense of responsibility on my little shoulders.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý In my job, Rosie, as disability correspondent, there are two kinds of emails that I get more than anything. And one of those is about how I work and how I do the things that I do, and how do I cope, do I have PAs, all of that kind of stuff, all of which you’ve just touched on. The other is from gay disabled people who feel isolated from that particular community, for two reasons: access and also feeling excluded from that kind of whole body beautiful kind of narrative that there is. As a gay woman what are your experiences like, especially being in the public eye and everything?

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I feel like with every minority group the problems are we’re too busy fighting each other that we can’t make big changes. And I find that in the disability community I’ve unfortunately been with physically disabled people who say, oh but head disability is not like us. And it’s like, no, if you’re disabled you are disabled, and we’re not going to make change in society if we start fighting each other. And unfortunately I’ve had a similar experience in the queer community in that I really think we’re getting better and we’re getting more accepting, but the whole thing of the group of lesbians who don’t accept transwomen as women. Stop fighting each other! I personally didn’t come out till my late 20s because I would look at the queer community and think, I don’t belong there.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Really?

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. In my 20s when I was closeted I would go to gay bars with my friends and the bouncer would say, ‘No, you can’t come in. A, you’re too drunk, and B, you’re not gay’. That was so damaging for me as a closeted gay woman. And even now I am out and proud, I love being gay, I shout it from the rooftops, but I have never been to London Pride.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Why not? Why don’t you go?

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Because it terrifies me as a wobbly person in terms of accessibility. If I want to show up on Pride I would get knocked down, stepped on. And I feel like it is getting better, but the queer community could do so much more in terms of being more accepting of disabled queer people.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I could talk to you forever, Rosie Jones, but I realise I’m being quite selfish. Emma wants to say something, don’t you, Ems?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý I always want to say something, always, constantly. No, I’ve been really enjoying listening to your conversation. I’ve been reading Edie Eckhart, the character in your books, and she’s having conversations about that at 12. What a disabled role model Edie is for disabled girls. Tell me a bit of the thinking behind the Edie Eckhart books.

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý My parents are the best people in the world, but growing up in the ‘90s being disabled, being the first person with a disability to go to my mainstream school was hard. And to add onto it I was having feelings for other girls. I remember wanting to kiss a girl in my class when I was four.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý No!

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Four years old. But because it was the ‘90s, because on TV, in books there was no disabled people, and when they were rarely on TV they were the victims, they were vulnerable, they were the villains. And god forbid, none of them were having sex. No one was shagging, no one was, oh my god, in a loving relationship. When I was old enough I thought no, I want to put this right. But even nowadays I couldn’t believe the lack of disabled characters in children’s books.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Yeah. So, you wanted to change that?

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes. So, that’s why I wrote Edie. I don’t think it’s a spoiler because everyone out there should have read the first book at least, but Edie is based a little bit on me. And at 12 years old she gets a crush on another girl. And I just wanted to share how normal that is.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý We can also see you absolutely gadding about and taking the micky out of various comedians on Trip Hazard on Channel 4 and All 4 as well, which I’m really, really enjoying. I particularly liked from last series the James Acaster episode, and you just singing Slidey Slidey Bum Bum at him in a cave.

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Can I live here and can we just do every episode together?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh my god, Emma, could you imagine that?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý I would love that, I would love that.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’d get bumped off the podcast. Oh my god, Rosie, I adore you. So, we can get your Trip Hazard on More 4 and the book’s out now?

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Amazing. What’s the book called?

ROSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý The Amazing Edie Eckhart.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And you are the amazing Rosie Jones. [Music] Well, I think I’m a bit in love with Rosie Jones. Are you, Em?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý I am. I honestly have a bit of a girl crush on Rosie Jones. I didn’t want to say that when she was there, but.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, listen, if you like what you hear more then subscribe to us on Â鶹ԼÅÄ Sounds, or wherever you get your podcasts actually, and tell your friends about us because they might appreciate a bit of Rosie Jones and all the fabulous guests that we’ve got coming up in the future. See you next week.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌý Bye.

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