2nd September 2022

bbc.co.uk/accessall

Access All 鈥� episode 16

听

Presented by Nikki Fox and Emma Tracey

听

EMMA-听听听听听听听听 There鈥檚 like a beach five minutes鈥� walk from my house.

NIKKI-听听听听听听听听听听 Oh wow.

EMMA-听听听听听听听听 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鈥檛 we swim. So, I have started swimming in the sea.

NIKKI-听听听听听听听听听听 Oh!

EMMA-听听听听听听听听 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鈥檚 no steps and hand rails, and it鈥檚 really blindy-friendly, and it鈥檚 really social. I go to when I鈥檓 out of my depth and then I turn around and I swim back. And there is loads of seaweed.

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

EMMA-听听听听听听听听 I can. It鈥檚 making me want to go there right now.

NIKKI-听听听听听听听听听听 It鈥檚 so nice.

EMMA-听听听听听听听听 I know. But there鈥檚 seaweed and there鈥檚 rocks to contend with.

HUSBAND-听听 Enjoy. I鈥檒l see you in a moment.

EMMA-听听听听听听听听 Oh, there鈥檚 my husband. This is a video of me getting into the water.

HUSBAND-听听 Keep going. It鈥檒l all get wet. Well done.

NIKKI-听听听听听听听听听听 Oh, I love your hubby.

HUSBAND-听听 Keep floating. Nice one. I鈥檒l see you in a second.

EMMA-听听听听听听听听 Yeah, because there鈥檚 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-听听听听听听听听听听 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鈥檓 good in my own way, but I鈥檓 not strong enough I think now unfortunately. I think back in the day I would have been.

EMMA-听听听听听听听听 Yeah, there鈥檚 no steps into the sea. If it鈥檚 high tide the sea鈥檚 right beside where you鈥檙e getting ready and I think鈥�

NIKKI-听听听听听听听听听听 There are stones though. That鈥檚 a bit problematic, isn鈥檛 it? Were there stones where you were?

EMMA-听听听听听听听听 I mean, I鈥檓 not going to say there were no stones because that would be lying.

NIKKI-听听听听听听听听听听 We鈥檒l find somewhere. We should do an Access All outing. Let鈥檚 all go swimming.

EMMA-听听听听听听听听 Let鈥檚 go sea swimming.

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

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. 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 And coming up later:

ROSIE-听听听听听听听听听 There鈥檚 a sense of responsibility on my little shoulders.

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

EMMA-听听听听听听听听 And make sure you subscribe to Access All on 大象传媒 Sounds.

NIKKI-听听听听听听听听听听 Well, I couldn鈥檛 live and work unless I had somebody to help me, and I know you couldn鈥檛 either, could you, Em?

EMMA-听听听听听听听听 No, I absolutely couldn鈥檛.

NIKKI-听听听听听听听听听听 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鈥檛 solved. Now, she鈥檚 talking about care homes, community living, that kind of thing. The Baroness isn鈥檛 feeling too cracking at the moment but she sent me a text from hospital saying, 鈥楳ost of us escaped from them in the 1970s to live independent lives. We don鈥檛 want to go back鈥�.

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鈥檚 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, 鈥榃e need workers from Europe to be able to return to this country to make up the shortage of personal assistants鈥�. She also said that if all disabled people ended up living in a community she bagsied living next door to me. But seriously, let鈥檚 get an idea of the scale of the problem.

听听听听听听听听听听听听听听听听听听听听听听 Now, we鈥檙e joined by Anna Severo. Have I pronounced that right, Anna?

ANNA-听听听听听听听听听 Yes, that鈥檚 right.

NIKKI-听听听听听听听听听听 Now, Anna you鈥檙e a wheelchair user with an energy impairment. And you should have 35 hours of PA time, haven鈥檛 you? But you鈥檝e had nothing for weeks.

ANNA-听听听听听听听听听 I usually have two, sometimes three PAs, so I鈥檇 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鈥檝e just found it impossible to recruit at the moment. I鈥檝e never known it to be this hard. I鈥檝e had PAs for about ten years, you have to sift through a lot of applications; but at the moment I鈥檓 lucky if I get one or two a week. And then what I鈥檓 finding is people aren鈥檛 actually interested in the role when I follow with them, or they even accept the job and then don鈥檛 turn up on the first day. It just has felt like such hard work.

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

ANNA-听听听听听听听听听 They鈥檙e 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鈥檓 out and about they鈥檒l open the door that I can鈥檛 open because it鈥檚 too heavy; they鈥檒l chop vegetables so I can have my dinner in the evening. When it鈥檚 working well I almost don鈥檛 notice, obviously I know they鈥檙e there, it鈥檚 seamless. It鈥檚 just me getting on with my daily life. I know I鈥檓 very lucky, I can still get out of bed, I can still eat. I know for some disabled people it鈥檚 not an option to not have a PA and they鈥檇 have to find some other solution. But it does mean that I鈥檓 having a shower once a week at the moment, and that鈥檚 not ideal. But wet wipes and dry shampoo get you so far, but it鈥檚 not what you want in life.

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

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

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

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

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

ANNA-听听听听听听听听听 Yes. So, before the pandemic I was probably travelling to London or Manchester and places twice a week. At the moment it鈥檚 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鈥檚 that kind of thing. And I鈥檝e 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 鈥� because they鈥檙e always really heavy because they鈥檙e fire doors, even though it鈥檚 a disabled room.

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

ANNA-听听听听听听听听听 In one way I think I鈥檓 quite good, I think a lot of us as disabled people are pretty resilient. We鈥檙e quite good at finding solutions.

NIKKI-听听听听听听听听听听 Yeah.

ANNA-听听听听听听听听听 And I鈥檝e sort of got into camping out survival mode. So, in one way I don鈥檛 sit and think, oh I鈥檝e only gone out once this week, and I really wish I could have done this, this and this. I鈥檝e almost taken those options off the table. I鈥檓 in a kind of temporary life situation, getting through this current, I don鈥檛 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鈥檙e putting yourself out there all the time, you鈥檙e putting your advert out, you鈥檙e sharing quite personal information about what you need, you鈥檙e interviewing people and then they don鈥檛 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鈥檚 kind of that up and down sort of thing.

NIKKI-听听听听听听听听听听 Yeah, I hear you.

ANNA-听听听听听听听听听 And when I thought I had a PA it was such a relief. I thought oh, I鈥檒l be able to do that again, oh I can do that, I can sort that out, just things I鈥檇 stopped doing. And I think that puts people off using direct payments and PAs. I鈥檓 really passionate about self-directed support, I鈥檓 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鈥檛 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-听听听听听听听听听听 And you take on all that responsibility, the payroll, the hours, the timesheets, and you are very much out on your own. There鈥檚 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鈥檛 turn up I wouldn鈥檛 be able to get out of bed. So, it鈥檚 like what do you do? You don鈥檛 have agency back-up either.

ANNA-听听听听听听听听听 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鈥檓 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鈥檇 rather avoid it, but it may come to that.

NIKKI-听听听听听听听听听听 Well, we鈥檙e听 joined by 鈥� I love Katy 鈥� it鈥檚 Katy Etherington. I鈥檝e met Katy before because we鈥檝e covered this story for 大象传媒 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鈥檚 a kind of dating site, isn鈥檛 it Katy?

KATY-听听听听听听听听听听 Yeah.

NIKKI-听听听听听听听听听听 You鈥檙e matching disabled people with personal assistants. And you鈥檝e got about 20,000 users, haven鈥檛 you?

KATY-听听听听听听听听听听 Yes, it鈥檚 over 22,000 now across the UK.

NIKKI-听听听听听听听听听听 Wow. I was going to say, how鈥檚 business going. Booming, Katy?

KATY-听听听听听听听听听听 Well, it sounds like it鈥檚 booming, but I鈥檝e 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鈥檚 available.

NIKKI-听听听听听听听听听听 In Baroness Campbell鈥檚 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-听听听听听听听听听听 In my opinion absolutely yes.

NIKKI-听听听听听听听听听听 Because you鈥檝e got all the figures of people that join and everything, haven鈥檛 you?

KATY-听听听听听听听听听听 Yes.

NIKKI-听听听听听听听听听听 How can you say that so confidently?

KATY-听听听听听听听听听听 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鈥檙e not coming anymore. And I鈥檓 even getting emails on a weekly basis from people saying, can you sponsor us. Unfortunately it鈥檚 not something that PA Pool has the legal allowance to do, like agencies do.

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

KATY-听听听听听听听听听听 Absolutely yeah. For some strange reason the government decided that private employers weren鈥檛 able to do the kind of process of sponsorship. They are just so suited to the role of PA, they are just brilliant.

EMMA-听听听听听听听听 So, why are they suited? Can we talk a wee bit about the job? Because some European PAs used to commute, isn鈥檛 that right?

KATY-听听听听听听听听听听 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-听听听听听听听听 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鈥檝e seen people say that they鈥檝e 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-听听听听听听听听听听 Exactly. And you can get 拢9 an hour for working at Tesco鈥檚 and there鈥檚 no bum wiping involved, I mean it鈥檚 a no-brainer, isn鈥檛 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鈥檚 not just about personal care, it鈥檚 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-听听听听听听听听听听 So, Katie, I鈥檓 looking for a job as a PA. I can鈥檛 do anything but we can have lots of fun. Be my friend.

KATY-听听听听听听听听听听 I鈥檇 love to go away with you, Nikki. I also think there鈥檚 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 拢250 a day.

NIKKI-听听听听听听听听听听 The pay can be a problem as well because local authorities will set the budgets. If you鈥檙e 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-听听听听听听听听听听 It鈥檚 very, very varied.

NIKKI-听听听听听听听听听听 It depends if you鈥檝e got the resources and the energy and everything to fight your case.

KATY-听听听听听听听听听听 Yes.

NIKKI-听听听听听听听听听听 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, 拢15 an hour rather than 拢9 an hour, because basically you鈥檇 have nobody and you鈥檇 be stuck in bed.

We put Baroness Campbell鈥檚 statement to the Department of Health and Social Care and they got back to us saying, 鈥榃e鈥檙e working to grow the adult social care workforce and are investing 拢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鈥�. What do you reckon to that, Katy?

KATY-听听听听听听听听听听 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鈥檛 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-听听听听听听听听听听 Well, guys this has been so insightful, and I hope a lot of people have got a lot out of this. So,听 thank you so much for joining us.

KATY-听听听听听听听听听听 Thank you.

NIKKI-听听听听听听听听听听 I made it out of the hospital. I鈥檝e survived. I鈥檓 in my car now, just about to leave. But it actually went really well.

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

EMMA-听听听听听听听听 Ah.

NIKKI-听听听听听听听听听听 Sounding relieved that I鈥檝e just got out of hospital. I鈥檝e got nothing else to give.

EMMA-听听听听听听听听 Well, I don鈥檛 know, I think being in a hospital appointment for how many hours and coming back out and doing your job, I think that鈥檚 pretty cool, and I think it鈥檚 worth talking about.

NIKKI-听听听听听听听听听听 Ah!

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

NIKKI-听听听听听听听听听听 No, not at all, not at all. I think you know, Emma, I don鈥檛 know whether I鈥檝e told you, but I鈥檝e got endometriosis and something called adenomyosis 鈥� I don鈥檛 know if I鈥檝e pronounced that right.

EMMA-听听听听听听听听 What does that mean?

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

EMMA-听听听听听听听听 Oh, we鈥檙e not going to talk about Kate Bush again.

NIKKI-听听听听听听听听听听 Oh, can we? No, we鈥檙e not.

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

NIKKI-听听听听听听听听听听 Oh, that was good, that was good. So, I鈥檝e tried a contraceptive pill; that didn鈥檛 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鈥檝e always found it quite difficult because of my disability. Our local GP doesn鈥檛 have an adjustable bed or stirrups, and I鈥檝e found that very difficult. So, I鈥檝e had a lot of very lengthy kind of painful smear tests in the past. Now, smear tests aren鈥檛 painful, we should all go and get our smear tests, it鈥檚 incredibly important. It was just painful for me because I couldn鈥檛 get in the right position. The poor nurses were sweating. I mean, they were lovely, they were doing their best, but they were like, 鈥楶lease let me never have to do you another smear test ever鈥�.

EMMA-听听听听听听听听 I know, and then you鈥檙e lying there going sorry, sorry, when it鈥檚 not your fault.

NIKKI-听听听听听听听听听听 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鈥檚 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鈥檛 really know what a polyp is.

EMMA-听听听听听听听听 Is it a little growth?

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

EMMA-听听听听听听听听 Can I ask my favourite question that I always ask? It鈥檚 not my favourite question but it鈥檚 always my burning鈥�

NIKKI-听听听听听听听听听听 Is my dog a support dog?

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

NIKKI-听听听听听听听听听听 Muscular dystrophy, Emma!

EMMA-听听听听听听听听 You see, that鈥檚 how much I don鈥檛 think of you as disabled!

NIKKI-听听听听听听听听听听 That鈥檚 how much you pay attention.

EMMA-听听听听听听听听 Your disability does not define you. I don鈥檛 even remember what your disability is.

NIKKI-听听听听听听听听听听 All right, love, I鈥檒l let you have that one. I鈥檒l let you have that one, just this week. No, it鈥檚 got nothing to do with it. But it鈥檚 been a right eye-opener.

EMMA-听听听听听听听听 If that鈥檚 something that you have trouble with it or that you鈥檝e 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-听听听听听听听听听听 Okay, so it鈥檚 0330 123 9480. I鈥檇 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-听听听听听听听听 We love to hear your experiences. It鈥檚 all good us talking about ours, but we鈥檙e two 40-something women working for the 大象传媒. You tell us what鈥檚 happening with you.

NIKKI-听听听听听听听听听听 Did you know we鈥檙e on 5 Live as well?

EMMA-听听听听听听听听 As a podcast. That鈥檚 really exciting.

NIKKI-听听听听听听听听听听 And you know the cow bungalow.

EMMA-听听听听听听听听 Yeah.

NIKKI-听听听听听听听听听听 My Helen, she鈥檚 a lovely lady, she said oh, 鈥業 stayed up and I heard your voice one night鈥�. 5 Live she was listening to.

EMMA-听听听听听听听听 Someone else was listening to us on 5 Live, and that鈥檚 Suzanne鈥檚 husband.

NIKKI-听听听听听听听听听听 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鈥檚 what happened when boarding the return flight: she says, 鈥楾he Spanish assistance men, one small, one large 鈥� I like the detail there; thank you for that Suzanne 鈥� tried to get me into the window seat. Now, while doing so 听I was almost half undressed by them 鈥� I hear you, the same thing has happened to me and my sister 鈥� much to the merriment of the other passengers. They couldn鈥檛 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鈥�. 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鈥檙e both disabled, we did prebook the front seats and nobody told us that that was illegal.

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

NIKKI-听听听听听听听听听听 It is.

EMMA-听听听听听听听听 For the back and head and knees.

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

EMMA-听听听听听听听听 I stuck 鈥榳hat is a profiling bed?鈥� 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鈥檛 everything disability related?

NIKKI-听听听听听听听听听听 Oh everything.

EMMA-听听听听听听听听 And that鈥檚 what she was saying, she was saying she can hire a profiling bed for a hotel, they will let her do that, but that鈥檚 really expensive hiring as well. And do you know what, she said she can get self-catering accommodation, but she doesn鈥檛 want to do the meal planning, the washing, the cleaning. Her husband鈥檚 got a brain injury, they live together, they do all that when they鈥檙e at home; why should they have to do that just because he鈥檚 disabled and why should they have to do that when they go on holiday?

NIKKI-听听听听听听听听听听 Well, I鈥檝e never found one in a hotel.

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

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

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

NIKKI-听听听听听听听听听听 I added up, and I鈥檓 not asking for the world, I need a raised shower seat, a raised toilet seat, and a profile bed, and you鈥檙e looking at 15,000.

EMMA-听听听听听听听听 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-听听听听听听听听听听 I鈥檝e potentially underestimated that as well. It鈥檚 really expensive. I need a new scooter, to get a car you need a hoist 鈥� the list goes on. There you go, it鈥檚 expensive being disabled, people.

MUSIC-听听听听听听听听 Access All with Nikki Fox.

NIKKI-听听听听听听听听听听 She鈥檚 a comedian and she鈥檚 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-听听听听听听听听听 Hello. How are you?

NIKKI-听听听听听听听听听听 So good for seeing you.

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

NIKKI-听听听听听听听听听听 And why鈥檚 it so deep and husky?

ROSIE-听听听听听听听听听 I鈥檝e been in Edinburgh. I drunk all the alcohol, I was screaming my head off, and now I鈥檝e ruined it. but I think it makes me sound quite鈥�

NIKKI-听听听听听听听听听听 Sexy.

ROSIE-听听听听听听听听听 鈥exy.

NIKKI-听听听听听听听听听听 Yeah, I鈥檓 with you. Sexy. But that鈥檚 it, okay, you鈥檝e 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鈥檓 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-听听听听听听听听听 I need to learn the word no. Because I have had a quite quick rise to fame or whatever.

NIKKI-听听听听听听听听听听 Fame, Rosie Jones, fame.

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

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

NIKKI-听听听听听听听听听听 Really?

ROSIE-听听听听听听听听听 Yeah. In my 20s when I was closeted I would go to gay bars with my friends and the bouncer would say, 鈥楴o, you can鈥檛 come in. A, you鈥檙e too drunk, and B, you鈥檙e not gay鈥�. 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-听听听听听听听听听听 Why not? Why don鈥檛 you go?

ROSIE-听听听听听听听听听 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-听听听听听听听听听听 I could talk to you forever, Rosie Jones, but I realise I鈥檓 being quite selfish. Emma wants to say something, don鈥檛 you, Ems?

EMMA-听听听听听听听听 I always want to say something, always, constantly. No, I鈥檝e been really enjoying listening to your conversation. I鈥檝e been reading Edie Eckhart, the character in your books, and she鈥檚 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-听听听听听听听听听 My parents are the best people in the world, but growing up in the 鈥�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-听听听听听听听听听听 No!

ROSIE-听听听听听听听听听 Four years old. But because it was the 鈥�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鈥檛 believe the lack of disabled characters in children鈥檚 books.

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

ROSIE-听听听听听听听听听 Yes. So, that鈥檚 why I wrote Edie. I don鈥檛 think it鈥檚 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-听听听听听听听听 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鈥檓 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-听听听听听听听听听 Can I live here and can we just do every episode together?

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

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

NIKKI-听听听听听听听听听听 I鈥檇 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鈥檚 out now?

ROSIE-听听听听听听听听听 Yeah.

NIKKI-听听听听听听听听听听 Amazing. What鈥檚 the book called?

ROSIE-听听听听听听听听听 The Amazing Edie Eckhart.

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

EMMA-听听听听听听听听 I am. I honestly have a bit of a girl crush on Rosie Jones. I didn鈥檛 want to say that when she was there, but.

NIKKI-听听听听听听听听听听 Well, listen, if you like what you hear more then subscribe to us on 大象传媒 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鈥檝e got coming up in the future. See you next week.

EMMA-听听听听听听听听 Bye.

听

听