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17th September 2025

bbc.co.uk/accessall

Access All – Ep 178

Presented by Emma Tracey

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EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hello, I’m Emma Tracey. This is Access All. And later in this episode I speak to rock folk duo The Bengsons. They’re from the US, they’re married, they’re disabled. And it started off as a pretty regular chat and then it took an unexpected turn where we started playing a game about bug facts. Take a listen:

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The queen bee has an anatomical set of pockets on their thighs, on their legs. And guess what they keep in the anatomical pockets in their thighs? You’re never going to guess, you’re never going to guess. I’m going to get to tell you. They carry…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, what a cliffhanger, Juliette.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý That is such a tease. If I were listening to this, which I will be when it’s broadcast, I wouldn’t switch off; I’d have to listen right till the end to find out what the answer is.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý This is Juliette. She’s a comedian extraordinaire. A regular reader of audiobooks I’ve just found out.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Disabled of course. And also a frequenter – is that a word?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, frequenter.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Of Comic Cons.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, Comic Cons. I’m a cosplayer so it’s my hobby.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What’s that?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý So, cosplay is playing with costume. You dress up as your favourite characters from video games or comic books or movie franchises, and you get to spend the day exploring your own identity. That’s how I sort of approach it is I like exploring different aspects of my own identity through these characters and I learn a lot about myself through them. So, yeah, I’ve done all sorts. I’ve done Rogue from the X-Men who I love. She’s my all-time favourite.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What’s good about her?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý So, her power is that if you touch her skin she absorbs your powers, your memories, your abilities and you might just die. So, if she were to touch me for example, Emma, then she would absorb the ability to write an award winning 5-star comedy show obviously [laughter].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But also is this to repel hugs, this sort of thing?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, this is part of her gift and her curse is that she can’t ever touch anybody. She’s very, very powerful, super powerful.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I would really hate that. As a blind person not being able to touch anybody would sort of be problematic.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý As a kid I had undiagnosed ADHD and autism which have developed into a myriad of different mental illnesses. And for me I love the fact that she felt too much, like, she felt all of the things and she had too much empathy. She could really live other people’s lives through their memories. So, I absolutely adored her.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Who would I play?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I have come up with so many. I wondered whether you wanted to be inspired by, for me there’s a few different characters that I cosplay as that have helped me understand my disability a bit more. So, I’ve got some characters that are blind. I’ve got 12 characters who are either blind of visually impaired for you.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Twelve!

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Then I’ve got some that are Irish, because obviously Irish roots. So, shall I rattle through a couple for you?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Juliette, I feel you’ve over prepared.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, I really have. I’m a nerd.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Is this part of being an autistic person and a nerd all rolled into one?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I need you to do a little job on the fly and break it down a little bit more for me.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay. So, I think that if you were going to go down the celebrating visual impairment route there’s got to be one, you’re going to have to gender flip, Dare Devil. Because not only has he got visual impairment but he’s also Irish, so you’ve got two in one there.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Is he?!

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, he is, well from Irish descent.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh right.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, there you go. But he’s an absolutely banging one to go for. There’s loads of others like Oracle.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hang on a second. Dare Devil, what’s his powers?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý So, because he lost his sight in a tragic accident he now has, classically, all his other skills are hyper-hyper aware.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh yes, standard.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý So, he’s able to anticipate every move that the bad guys do. And he’s also a lawyer, which is another type of superpower. I would suggest, I loved cosplaying as Emma Frost from X-Men because she has velvety corsets and feathers and everything. And I think with all of my sensory overwhelm having all the soft things around me felt really lovely and empowering. So, for you I would say that would be something that probably if you enjoy…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Does she have any powers?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh yeah, hell yeah. She’s telepathic and she can cast illusions telepathically. So, much like I’m casting the illusion of being very confident and knowledgeable right now.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Telepathy I could get behind. I’d quite like to know what the producer’s thinking a lot of the time, because sometimes I completely stop and…

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Stop and guess it.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I know exactly what he’s thinking. He’s thinking let’s get on with the show!

MUSIC-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Theme music.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, hello there. This is Access All. I’m Emma Tracey, and I’ve got Juliette Burton with me this week. Hi, Juliette.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Hello, hi Emma. I’m very happy to be here. Thanks for having me.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Have you subscribed to Access All on ÃÛÑ¿´«Ã½ Sounds?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I have, I have indeed.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Everybody else do like Juliette, press that big button, subscribe to Access All because then you get it down on your device every week, and you also get any extra episodes that we throw in as well. And we do that sometimes. Also you can get in touch accessall@bbc.co.uk. And we are on social media, we’re on X and Instagram @ÃÛÑ¿´«Ã½AccessAll.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Right, Juliette, every week on Access All we have a little look through the headlines from disability news over the week. And this week is no different. And you have come up with some crackers.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh thank you, yes. Shall we start with an airline passenger who pretended to be disabled to smuggle nearly £1 million of cocaine into the UK with his mobility scooter? Because he got jailed this week. Shall we chat about him?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs] yes. He got jailed for nearly seven years. That’s quite bold, isn’t it, what he did?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. Have you ever used your disability to smuggle anything, Emma?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh no, never! What? How? Why would you even ask me such a thing? What? No, stop!

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I definitely have smuggled things.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, I have.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Have you? What have you smuggled?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I can’t say. I’m a ÃÛÑ¿´«Ã½ employee. I may have. A blind friend of mine when we were growing up smuggled some other people’s booze into festivals.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Other people’s though, not yours?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well I mean, mine and other people’s. No, my blind friend’s and other people’s.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Right, okay.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, he had 12kg of drugs, which is quite heavy, right?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, and he’s totally able-bodied, so I’m confused about the mobility scooter issue. He has an electric wheelchair, and it was stopped by Border Force officers at Manchester Airport back in March. He was coming back from Barbados with it. So, that’s a lot of cocaine.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It is. And it’s a worrying trend because this is actually apparently the second time this week that someone has been charged smuggling drugs using a powerchair.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Really?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, that’s the first thing, a worrying new trend.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s a trend.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, smuggling using powerchairs, people have realised what disabled people have understood for many, many years that once you’re in a powerchair you’re maybe scrutinised a bit less.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý And it’s that horrible thing, everyone wants to be treated humanely, right, and that’s absolutely the basic human decency, and yet you’ve got people like this who are doing it and they don’t need these scooters or these aids. They’re giving us a bad name because I feel like there’s an ethical aspect. Because I grew up with invisible disabilities and that meant that loads of people when I first got diagnosed were like no, it’s made up, it’s attention seeking. And it’s like, well this is the type of people who are making it seem like yes, it is made up, because they want to get away with stuff.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Do you know what, it actually hits really hard when someone pretends to have your disability.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, there were a few TikTok videos around a couple of months ago where parents were getting their kids to pretend to be blind to up their revenue on TikTok and to, I can’t remember the language used, but it’s to get more money basically.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh gosh, no.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And they were saying, oh I’m really sad because I’m blind and I walk into things. It just hurt, really hurt that a parent would do that. It was just such a…it just really hurt.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý It cuts deeper.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’m not being very articulate, am I? [Laughs] it just really hurt me.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I completely get it, because I’ve had people come up to me after my comedy shows and be, oh go on then, how much of that’s made up. And I’m like, why would I make this up? If I could make up my life it would not be having so many different mental illness diagnoses, so many different neurodivergent diagnoses. This is not what I would choose, you know. But it’s got its silver linings and all of that and life experiences that I’ve learnt. But this kind of guy I’m a bit irate about it, because as much as it’s cheeky, it’s also giving us a bad name.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes. Well, this brings us really nicely I feel onto the next headline, which is basically about misdiagnosis, isn’t it?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý It is.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Tell me more.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý There was a ten year-old girl who has been experiencing sudden mood swings that left her unable to attend school or her dance classes. And her parents and everyone who was treating her for a long while thought it was mental health conditions, so mental health problems. Like, she was screened to anxiety, she was screened then for bipolar disorder, she was screened for autism even. And after months and months of appointments they determined she was suffering from PANDAS syndrome – I hope I’m pronouncing that correctly.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Which sounds very cute.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý It does sound cute. It’s PANDAS but it’s a rare disorder caused by streptococcal infections.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, a sore throat basically?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. And it can trigger obsessive compulsive behaviour, extreme mood swings, anxiety, depression, sleep problems, hyperactivity and tics, even tics similar to Tourette’s.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Wow. And the most amazing thing is you go through all this long misdiagnosis process, because it’s quite hard to diagnose in fairness, and then you can be treated with antibiotics.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, exactly that.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It wasn’t a mind related problem at all and it wasn’t anything that was going on with that ten year-old’s brain. She was having all these really, really, really scary symptoms. It was a physical infection, it was a physical thing that could be cured by antibiotics. So interesting and so useful to know that that actually exists. But then I think it hit with you, didn’t it, because when you’re exhibiting a mental health issue, so you’re exhibiting symptoms of one, anything else you go to the doctor with gets misdiagnosed as being part of mental health, right?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. And it’s been really pertinent in the last few years. So, back in 2022 I caught COVID and since then my immunity went really bad, so I caught so many infections. I had pneumonia, I had shingles, I had…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh my god, the big ones!

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý The big ones. Then I also had repeated UTIs, I picked up every fever.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Nice.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, so sexy [laughs]. I picked up every fever going, any cold going lasted for a long old while and was flu-like. And I kept going to the doctors and being like, there’s something wrong, there’s something wrong. And last year 2024 it got to the point where I got an all-over body rash, so it was from my neck downwards, every single part of me apart from my palms and the bottoms of my feet. It was really painful. And the doctors said, looking at my medical history, well it’s probably just stress, and have you tried calming down. For a while, I’ve even written for the Metro about it being linked to medical misogyny potentially. But how much of it is medical misogyny and how much of it is being too quick to brush all these physical symptoms into a mental health related pile?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, medical misogyny being that women are treated differently than men?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And men treated more favourably?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý And not always by male doctors. It can be by female presenting doctors.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Did you get a cream for it?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs] it was only until my partner, who’s male presenting, came with me to appointments to say no, she really can’t live like this, and it isn’t stress. But this February I was diagnosed with a completely different doctor, so I went to a completely different area and went right, I need help. They gave me some pills that basically I haven’t been ill since February. I had one little cold, and a couple of hangovers, which I think is my fault [laughter].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Listen, we’ve only got a tiny bit of time now to talk about, right, so did you meet your partner through a special dating app?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý What a segway, Emma.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you [laughter].

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý We did meet via a dating app.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý A special dating app?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý No, we didn’t meet…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Because there is a new one, isn’t there?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý There is. There’s one that’s coming over. It’s going to be coming from Australia, and it’s a neurodivergent dating app. It’s coming to the UK and to the US.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Why do you need your own dating app though, you neurodivergent people?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I mean, I would say that my dating history has been quite self-selecting of neurodivergent people anyway. Even my friendship circle, the people who’ve lasted the longest in my relationships have been people who they themselves have either ADHD, autism or…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But you’re meeting them in the wild. Why do you need this, the app’s called Wable by the way, which I’m not sure about if I’m honest.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Wable’s weird. Wable.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s like Weeble, wobble, Womble.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, is it meant to be a play on the word able? But then it doesn’t actually mean anything.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Willing and able apparently.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Willing and able? [Laughter] are you ready, willing and able? I don’t know if that’s the best chat up line.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I know, I feel like willing and able is, like, open to anything [laughs].

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, that’s a different app that I can tell you about off air, if you like, Emma.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, it’s a different show, different app, different show. But if you already self-select why do you need Wable?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, I do think it’s helpful because…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’m going to call it Wabbla.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý …I’ve had lots of dates with people who are neurotypical and at the very start I’m like, there’s all my labels, here’s my history, I’ve been sectioned under the Mental Health Act, here’s my autism and ADHD stuff. Because ultimately if you hide any of that I think that it’s just delaying the inevitable if they can’t handle it in the first date. So, I feel like that’s one way that’s helped me sort the wheat from the chaff – farming reference. My farming family will be proud [laughter]. But I also think that it helps because there’s a short hand. You can waste so much time trying to justify your behaviour, trying to explain your behaviour. And my job is not to educate people, certainly not on dates. Maybe in other places like when I’m facilitating workshops. I’ll even say in my comedy routines maybe sometimes my job is partly to educate as well as entertain.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, but not when you’re on a date.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Not when I’m on a date.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I have heard that before. Tell me, it’s got a chat wheel?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I think for me the thing that appeals the most is that it’s a game. And for me and fellow neurodivergent people we love boardgames. The gamification of dating apps in general this is the next step.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, if you’re awkward chatting though the chat wheel would help, would appeal?

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I think so, yeah. It’s like a conversation starter, isn’t it? It’s just a little icebreaker. And I think giving the responsibility over to a wheel, I’m imaging it being like the Wheel of Fortune, like you’re on a gameshow. It’s a game of chance, and I feel like it’s giving a little bit of responsibility to the app to start that conversation for you.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay producer, I need a wheel.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, you could do that!

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Maybe I should do all my interviews using a chat wheel.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I love that. I love the idea of having a little wheel, and then you could end on like a quick-fire question with the wheel.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. So, we can do it for the last few questions. I’m going to get one next week.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I can’t wait. This is lovely.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Juliette Burton, it has been an absolute pleasure, despite the fact that I am going to dream about disabled drug smuggling superheroes who date each other tonight.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs] that sounds like a great dream. It sounds fantastic.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s been a bit of a random collection of chat which I absolutely love. Thank you so much for bringing it to me.

JULIETTE-ÌýÌýÌýÌýÌýÌýÌýÌýÌý I love bringing you random stuff, Emma. Let’s do this again sometimes.

MUSIC-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We’re not just a podcast. Find Access All on social media and read our articles on the ÃÛÑ¿´«Ã½ News website.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You might remember a few weeks ago I spoke to disability minister Sir Stephen Timms. And I spent quite a big chat of that interview talking about Access to Work and asking him about that. That’s the government scheme designed to cover some of the extra costs of being disabled in a job. Because I’ve been speaking to disabled people who told me that when their grants were up for renewal their support was being reduced, so I asked Stephen Timms whether there had been changes in policy at Access to Work.

[Clip]

SHAUN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý No, we’re applying the policy as it currently is. We are looking at a future model, how Access to Work should look in the future.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, the model hasn’t changed recently?

SHAUN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The model hasn’t changed, no.

[End of clip]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, then he asked me for an example of where someone’s support had been reduced, and I used a high-profile example at the time which is artist Jess Thom. She’s since had her support reinstated. And this is what he said about that:

[Clip]

SHAUN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý There are constraints in what Access to Work can provide; maybe some time previously they haven’t always been applied, perhaps they are now being applied.

[End of clip]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Right, okay. So, he was saying that there are things that people could have done who work in Access to Work in the past that maybe they hadn’t been doing before – well that’s my take on it anyway. Nikki Fox, the ÃÛÑ¿´«Ã½â€™s disability correspondent has been out and about talking to disabled people whose support from Access to Work has been reduced and who are on long waiting lists and whose payments are taking a long time to come through. Nikki Fox is with me on Access All. Nikki what are disabled people saying? What is the situation with Access to Work at the moment?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, just like you mentioned there, Emma, I’ve been speaking to a lot of disabled people, more so recently, who are having real difficulties with Access to Work. I think you’ll know this, Emma, because we speak to a lot of disabled people all the time, you would be hard pushed to find someone that says Access to Work is a load of rubbish. The scheme for so many people, the scheme in principle is something that enables them to start a job and to stay in work, and climb up that greasy pole and do everything that we all want to do in life. but it’s not working as it should. And it seems to have ramped up quite significantly in the last year or so. I’ve heard a lot from disabled people like Josh, who we’re going to hear from in a minute, people who when they’re up for renewal, so when you have an Access to Work grant you’re going to get renewed at some point, it can be annually…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s been annually a lot lately I’m hearing as well.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It has, yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý People getting one-year rather than three-year grants.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And it’s that renewal process, the way Access to Work works the admin and everything involved we know, you’ve spoken about this a lot on Access All, I’ve covered it before, it’s very longwinded, it’s bureaucratic, it doesn’t work for a lot of people’s access needs. So, we know that there’s problems when it comes to renewal. Some people actually miss the deadline because they don’t realise they’re up for a renewal. But what I’m hearing a lot lately from a lot of disabled people is when they’re going through that renewal process the awards that they had previously been given they get less. Whether that’s the support that they need for a support worker, it’s mainly people with support workers that I’ve been speaking to actually, that when they come out of the process they haven’t got the same award; and it’s just so difficult because they’re in work and they need that support.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And you spoke to disabled business owner, Josh. What did he tell you?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Josh has had his business since 2019 now. Honestly, he’s running his own business, he kind of is working seven days a week as everybody, disabled or not, does when they have their own business. But he had an Access to Work grant that enabled him to employ a support worker for five days a week. When he went through the renewal process he was given a support worker for one day a week, so it was reduced significantly. It’s really put him in a pickle.

[Clip]

JOSH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’m not getting everything done that I used to get done.

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You’re not?

JOSH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, things are having to be parked on the bench, customers are waiting longer to get their orders. If we want people in work we have to support them and we have to do it quickly. There are people out there that are losing their businesses right now. I’m one of those that can be at risk, and that is a terrible place to be in when we want a thriving economy and we want people to have aspirations. We have to support them.

[End of clip]

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I mean, this is having quite an impact. Obviously we’ve heard from Josh there who runs his own business, but we’ve got people that are in work. I’ve spoken to a guy who’s brilliant. Now Ross isn’t actually having any problems with Access to Work at the moment, but what he was telling me I just thought really sums up how important Access to Work is for so many disabled people. Because he was saying, I’ve worked for Lloyds Bank for 20 odd years, I started in 2001, and since 2009 he’s been completely dependent on Access to Work. And the scheme supported him with wheelchairs, but also for him, most significantly, they fund him a support worker. And it’s enabled him to thrive in his career. I mean, the jobs market is so difficult anyway for anyone, but when you’re disabled and you’ve got extra challenges Access to Work is just something that does take the pressure off. People who need support workers, these are very high cost BSL interpreters that people need in place to be able to work, and they go above and beyond reasonable adjustments, which a business legally has to provide. And this is what Access to Work is and this is what it does, and it enables people to thrive. It’s why business owners are concerned, and it’s why organisations like the Business Disability Forum are also concerned.

[Clip]

ANGELA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We want more disabled people in work. The government has an 80% employment target that it really wants to reach. But we’re taking away the tools that disabled people need to do their part in achieving that target. So, at best it’s nonsensical; but at it’s really core it’s unjust.

[End of clip]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Strong words. And that was Angela Matthews from the Business Disability Forum. So, what’s the government saying about this situation?

NIKKI-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, they’ve said that they inherited a scheme that’s failing both employees and employers. They are reviewing, as I know you know, all aspects of the scheme and they’re going to be developing future policy alongside disabled people and organisations. It has also said that there might have been instances in the past where published guidance wasn’t always properly applied. It is being applied now, but that may give rise to some of the issues that have been drawn to the minister’s attention. But it’s insistent there’s been no change at all in the policy. Because we’ve heard that a lot, haven’t we, disabled people and organisations saying that they think there’s been a change in policy, but the government says absolutely categorically there has been no change at all in policy; there’s just an increase in the numbers of people using it.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Nikki Fox, disability correspondent, ÃÛÑ¿´«Ã½ News, thank you so much for joining me on Access All.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Abbie and Shaun Bengson are a married disabled rock folk duo from the US. They’re known for their autobiographical stage shows, and their newest one Ohio tells the story of Shaun’s progressive hearing loss and his loss of religious faith. It’s had rave reviews at the Edinburgh Fringe and it’s going to be in London’s Young Vic Theatre in October. Abbie has also had a recent diagnosis, she’s autistic, and she’s just figuring out how to take care of herself after years and years of burnouts and energy dips. And they’re doing all of this on stage for us. It’s absolutely fascinating and I couldn’t wait to speak to them a few days ago all about their show and their lives. And of course you’ll also find out the answer to what we teased you with at the start of the show. It involved bees and pockets by the way.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Let’s get to know you guys a little better so that we can understand the show, Ohio. You got married I believe four weeks after you met, but I mean you obviously had very interesting lives separately before that so let’s start there. Abigail, your parents owned and ran a school, is that right?

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh wow, this is deep cut. Yes, yes [laughs]. My parents started an elementary school in Vermont. They were really interested in sort of new ways of educating all kinds of children. And I got to go to that elementary school, that’s true.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And tell me a little bit more about your childhood and your early life.

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Let me tell you I did not know that, this is the headline for me at this time in my life, that I did not know that I was autistic, and other people in my life [laughs] also didn’t know that I was autistic. So, I got incredible support from some people, and incredible bullying and hatred from others – as I’m sure a lot of people listening to this can relate to. But I was also in my heart I think a happy child. I sang all the time. I sang to worms, I sang to trees, I sang to bugs. I was annoying I’ve been told, but [laughter].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý When I listen to your voice, Abigail, it does sound like a happy stim to me.

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh! [laughs]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Is that a good description?

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’m actually going to cry it is such a good description. It is the way my soul moves in the world. It’s like I get to stim and connect with the whole world with my voice. It’s my favourite thing.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, stimming is using ways of stimulating yourself if you’re feeling a bit overwhelmed or you need some sort of input. And some people jump and spin and move their hands around and squeal and all sorts of fabulous things. And one of yours is clearly singing because I can literally, I can hear it. So, why were you bullied, do you think, Abigail? Back to a sad note now.

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh well, I think that at that time, I grew up in the ‘80s, early ‘90s, I think there’s been such incredible growth in many areas of the culture around this, but we just didn’t have a name for what I was. I spent so much time trying to figure out, every time I met with a doctor or a shrink or anything the only question I had was, ‘What am I?’ because I just felt like an alien or an animal or something else. And now I have this gorgeous answer that actually opens me; it doesn’t limit me, it opens me into my experience of the world. But at the time I didn’t have it so kids thought I was weird and gross and annoying and awkward. And now I have beautiful positive words for all of those things.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý A gorgeous answer. That’s so interesting. So, you're a very proud, happy autistic person.

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Autism has been, oh, the coming into this autism diagnosis has been one of the most liberating experiences of my life. And coming into an artistic community, you guys…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You’ve met your people.

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý …it’s like I’ve met my people! I’m finally home. It’s really, including my husband by the way [laughs].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, are you autistic too, Shaun?

SHAUN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I am, yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, and here was me focusing on Abigail. That’s so unfair. I thought you’d just lost some of your hearing. I didn’t realise there was autism in there as well.

SHAUN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, of course.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Does it show up very differently for both of you then, Shaun?

SHAUN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I do really think that part of our getting married so quickly was recognising the way our brains worked in each other. And in my life there have been so few people who I feel like this person moves through the world the way that my body and my brain does. And I think with Abigail as soon as we saw each other I think there was just this deep exhale and this deep feeling of connection. And we fell in love with trading bug facts [laughter]. And that’s been such a joyful part of entering into the autistic community is just the joy of science and sharing all the little things that we’ve discovered.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I feel like we need to have a bug fact-off here, Shaun. So, I’ll get a fact from you first, Shaun, and then I’m going to get one from Abigail.

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You’re going to need a longer podcast.

SHAUN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs] I love ants. Ants I think are so amazing. One of my favourite little ant facts, which isn’t necessarily, I don’t know how deep cut any of this is, but there is a species of ant in the jungle that sometimes needs to move hives. And so what they do is they all go out into the jungle, they all go out in a big mass, but then when night comes and they need to sleep and they need to protect the queen they actually form a huge ball of ant, with the queen in the centre.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That is very cool. Okay, Abigail, beat that.

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs] well, did you know that bees dance maps for each other? And the queen bee has an anatomical set of pockets on their thighs, on their legs. And guess what they keep in the anatomical pockets in their thighs? You’re never going to guess, you’re never going to guess. I’m going to get to tell you. They carry bee semen.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý No!

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, [laughs] they get all of the bees to give them semen and they put it in their pocket so they can inseminate themselves whenever they want. And that is one of my favourite matriarchal bee facts.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Do we know how they decide which pocket to dig into when they want to inseminate themselves?

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs] I’m pretty sure that all of their pockets are filled so I think they can go with whatever pocket they wish. I don’t know how they decide. That is the only time I’ve ever been asked that question, and I think that is a mystery we will leave to the queen herself.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I feel like we kind of need to go on to your music at some point and your show, Ohio. Shaun, you’ve done autobiographical shows before. This one’s about you and your journey fairly recently. Tell me a bit more about it.

SHAUN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We’ve been working on this show for years. I think this is year seven. What that has meant for us is stepping into disability and into the joy of the disabled community. I grew up very much in the church, and the moment of stepping away from faith at the time in kind of great anger, it was also colliding with stepping into my hearing loss.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What happened that you lost your faith? Is that too big a question for this podcast maybe?

SHAUN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I feel like it’s something that in my life worked in circles. I would move closer and further, and closer and further to my faith and to atheism. It was sort of a long extenuated thing for me.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, it often is, isn’t it? But it kind of coincided with you losing quite a lot of hearing as well?

SHAUN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It really, really did. That’s something also, I guess, getting back to science facts, something that has been so fascinating for us is whilst we’ve been working on this show we’ve also been trying to learn some of the science behind hearing loss. I have quite a lot of tinnitus. Also thinking of bug facts, I used to love going on walks at night, I’d go for long works at one, two in the morning in Ohio, and I loved hearing the insects, all the cicadas and the crickets. And most of those sounds I can’t hear anymore. But my tinnitus sounds so much like those bugs.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh wow.

SHAUN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, in a way I’m walking with them always with me now, which can alternate difficult and also comforting.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Abigail, are the cicadas in the show? What do we expect from Ohio? It’s been getting rave reviews when it was in Edinburgh. You’re in Bristol at the moment, you’re going to be in London. What can people expect when they go to see Ohio?

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh my goodness. There’s a moment in the show where we try to recreate to the best of our ability what it sounds like to be in Shaun’s head. Now, we never know what other people in the audience can hear, if they’re hearing people, people with hearing loss, deaf people, so we made it specifically for me so that he could show me what it’s like. And we used the sounds of cicadas to actually simulate tinnitus, and we use that sound throughout sort of scientifically, but we use it poetically, and eventually we use it as a kind of music. In all the work we’re making we’re trying to honour the grief of loss that can be part of disability, and also think of it as a shore we’re moving towards that we’ll be welcomed towards. We can be honest about what’s difficult to lose and thrilled about where we’re headed.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, amazing. And how do you balance it all as disabled people, parents, musicians, people who have to travel? How do you balance all of that, Abigail?

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We don’t [singing], we don’t balance it [laughter]. It’s so hard. I mean, it’s incredibly difficult. I’m learning so much so fast from my friends, other support around just how to regulate my nervous system when there really aren’t, I think every parent maybe or care giver in general experiences how there aren’t a lot of minutes in the day to restore yourself. Luckily singing itself is a restorative act for me, and being with Shaun is a restorative act. And luckily both of our children are neurodivergent so we get to hang out with gorgeous [laughs] neurodivergent people all day long. Balance is maybe not in play, but joy is.

SHAUN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay. Well, I can’t wait to go and see Ohio and feel that joy for myself.

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yay!

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s been an absolutely joyful experience to speak to you both. Thank you so, so much, Shaun and Abigail Bengson for telling me your bug facts, how you make your music and a bit about your lives as well. And where can we see Ohio? What’s left in the UK now?

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We just finished up in Bristol, and you can catch us in London at the Young Vic for all of October. Come!

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you Shaun and Abigail. Thank you.

ABIGAIL-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you. Bye!

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Nathan Wedge was working 14-hour days as a dentist and an acting tutor earlier this year when he had 17 seizures in one day which left him unable to walk and talk. He’s been posting videos since then which have brought him 2 million likes and 40,000 followers on TikTok. Hi Nathan, how are you?

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hi, I’m really good thank you.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, thank you for coming on. I’ve been really, really loving your videos. Tell me a little bit more about yourself. You’re only 34 but you’ve done an awful lot already, haven’t you?

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. So, I’m ex-military, retrained to be a dentist, all in conjunction with that we have two drama schools and a casting agency for TV and film, and also father of six [laughs].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý A father of six! Wow, gosh, there’s an awful lot happening for you. How do you fit it all in?

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I don’t know how we did it. Now I’ve got a lot more time [laughs], but looking back I just don’t know how it actually worked.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, because obviously you can’t be running round doing 14-hour days at the moment because you had 17 seizures and it was because of FND, functional neurological disorder. Now, we had Alex Mitchell, comedian, in a few months ago who talked a little about that, he’s got it as well. And I believe it's your brain not talking to the rest of your body as well or as much as it should, is that right? What is it for you? What are your symptoms and how does it impact your life?

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That’s probably it summed up is that misfiring of signals. But for me how that manifests is I get left leg paralysis, I get left arm weakness, I have bladder retention so I have to use catheters, and it affects my speech.

[Clip]

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Today we went, did morning, she whipped, and when I say whipped she obviously don’t like men because she grabbed my catheter wire and just yanked it out. I’d never felt pain like it.

[End of clip]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý At one point earlier this year you weren’t able to talk at all and you weren’t able to move after all that seizure activity. I mean, you’ve been making videos for a long time anyway, but you started to make really regular videos documenting everything that happened and how you moved forward from it. tell us a bit about those videos and what happens in them.

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý For myself I wanted to document the journey, something to look back on, but also to raise a bit of awareness because it’s often a diagnosis that people get and then they are left with so many questions that are unanswered from medical professionals, and you’re often sent home with a website to look at. And it’s just to try to make people feel less lonely in the journey, including myself, because it is a very isolating place to be.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You’re really funny, you and your wife have great craic, great laugh, you’re very sweary but you’re very honest and it’s very sort of raw.

[Clip]

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The downside to being disabled however is being stuck in the bloody car with so many eyeing up your piece.

WIFE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I’m not your piece.

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs] your current girlfriend.

WIFE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oy!

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Have you seen that new friend?

WIFE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Your current wife.

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý My current wife. No, you put me off for life to be honest. I wouldn’t have another [laughs]. Love you.

[End of clip]

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It was really important to me that it did capture the truth of the situation, because not all of it is glamorous let me tell you [laughs]. There’s been so many points where I’ve sat and cried, like proper ugly cry. But it’s needed now and again, as long as we remember to laugh at the end of the day. Laughter is the best medicine, it really truly is.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It is. But what were the things during the journey that did make you, as you say, ugly cry?

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It was really early on when I couldn’t speak, and it was trying to communicate with people. Because all the words were there in my head and I knew what I wanted to say, but trying to get them out. It was like I was locked inside my own body and it was really frustrating.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. I mean, even now you’re using walkers to get round the house and your wife is pushing you in a wheelchair when you’re outside. Is that frustrating or is it just a kind of a journey and have you lent into it a bit more now?

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That frustrates me less than the speech did. And do you know what, we can overcome it. I’ve made so much progress from early June to now that yeah, I do use a walker and yeah, I do use a wheelchair, and you’re always going to get nosey people that have a stare over when we’re out and about, but at the end of the day we’re living our lives for us, not for them.

[Clip]

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý She has always said to me, you put the fuel in, you go to the till and pay, and now I don’t have to move a leg. Sorry love, you’re going to have to put the fuel in. I would really, really, really love to but I’m not going to be able to put the fuel in so you’re going to have to do it. And she can’t get mad, that’s the best bit. Always got to look on the bright side of life.

[End of clip]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What do your wife and kids think of all this fame and all these videos and the amount of followers and likes you’re getting?

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs] I think they’re used to just me being crazy antics long before this. Now I obviously just need a bit more assistance in doing it, so I’m roping them in. But I think they love it really. They might protest a little bit but they do like it.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What are you going to do next?

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I don’t think I’ll be going back to that clinical dentistry any time soon. I won’t write it off the table forever. Who knows? We don’t know how much I’m going to progress and where I’m going to be at in a few months, so I won’t say never, but not for now. Right now I’m just concentrating on getting stronger each day. The biggest thing is the energy levels.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Do you miss being a dentist?

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes and no [laughs].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Why do you not miss it?

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It is a very stressful job and it is very fast-paced. And I think this whole thing not just because of the dentistry but I’d got to a point in my life where my body told me enough’s enough now, you need to reassess.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, listen, I’ve really enjoyed chatting to you. It’s such a cool thing for me to have people pop up on my socials and my TikTok and then I get to have a chat with them. It’s awesome. Thank you so much for joining me for a bit.

NATHAN-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý No, thank you for having me.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, that’s it for this week’s episode of the Access All podcast. I’ve been Emma Tracey. Thank you so much for listening and I’ll see you next time. Bye.

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