‘I know what madness is, and this is the good kind’
The Access All team head to Scotland for their first live show!
The Edinburgh Festival Fringe is in full swing as Nikki Fox joins Emma Tracey in Scotland to put on a show at Dynamic Earth in front of a live festival audience!
Comedian Joe Wells reveals how he decided to become King of the Autistics and the unusual way he discovered he was autistic in the first place.
Mental health advocate, comedian and writer Juliette Burton confesses that while the rest of the UK “got into Wordle and banana bread” during lockdown, she got into neuroscience as she tried to figure out how her brain works.
And Australian actor Sam Brewer has been wowing crowds with his play described by some as a “woke farce” which changes peoples’ perceptions through the power of comedy. The problem is, the play has a name that simply cannot be said on a ̳ podcast…
Recorded by, and with huge thanks to the ̳ Edinburgh Festivals team. Mixed by Dave O’Neill
Produced by Beth Rose, Keiligh Baker and Emma Tracey
The editor is Damon Rose
Email: accessall@bbc.co.uk and Google us for the latest transcripts. Find us on ̳ Sounds, smart speakers and Five Live early on Monday mornings.
Transcript
21st August 2023
bbc.co.uk/accessall
Access All – episode 67
Presented by Nikki Fox and Emma Tracey
EMMA- We are in Dynamic Earth, which is quite a popular tourist attraction in Edinburgh.
NIKKI- It’s very beautiful.
EMMA- And ̳ at the Edinburgh Festival’s venue is here. And we are going into that venue, onto the stage to talk to people.
NIKKI- Yes. And may I say, Emma, your hair looks divine.
EMMA- Oh thank you. What about you?
NIKKI- I always look a little bit overdone, do you know what I mean?
EMMA- So, does that mean are you usually better dressed than me?
NIKKI- No, no, I just usually overdress, too much make-up and that kind of stuff.
EMMA- I did see your make-up box last night. You even let me touch it.
NIKKI- Yeah, it’s huge. And I’ve got a nice little outfit on, it’s like a champagne coloured dress and a little blazer.
EMMA- Lovely.
NIKKI- For the professionalism.
EMMA- I am very, very excited. We’ve just met all the guests.
NIKKI- Yeah, they’re lovely, aren’t they?
EMMA- Yeah. we’ve got Sam, we’ve got Juliette and we’ve got Joe. And we’ve introduced ourselves, had some silly jokes with them.
NIKKI- I think as I just left the green room to come and find you I heard Juliette say, ‘Does anyone in here mind boobs? Anyone mind seeing boobs?’ [Emma laughs] because she was getting changed. Brilliant.
EMMA- I thought there was a screened off area we could have sent her to.
NIKKI- She doesn’t mind.
EMMA- No, she’s right.
NIKKI- Boobs are boobs.
EMMA- She’s right, absolutely, absolutely.
NIKKI- Shall we do this, Ems?
EMMA- Let’s go.
PRESENTER- Please welcome to the stage Nikki Fox and Emma Tracey.
MUSIC- Theme music. [Applause and cheers]
NIKKI- Hello everyone. This is our very first live Access All for the ̳. It’s the disability and mental health podcast. This knackered old disabled bird on the mobility scooter with far too make-up is me, Nikki Fox.
EMMA- And I’m Emma Tracey, and we are live in front of our audience at ̳ at the Edinburgh Festival. And we have some fantastic guests for you tonight.
NIKKI- Yeah. But first a quick poll, lovely audience, I hope you don’t mind me asking this but I am very nosey:
EMMA- She is.
NIKKI- Is anyone disabled in the audience?
EMMA- Hands up.
NIKKI- Ah, hands up, hands up.
EMMA- But actually hands up doesn’t quite meet with my access needs, Nikki [laughter]. We can’t do hands up.
NIKKI- I’d forgotten about that.
EMMA- Yes, I think that people if you’re disabled you should hum like this [hums]. So, go on, give us a hum.
AUDIENCE- [Hums].
NIKKI- See now, I was not sold on this idea, but that was actually quite nice.
EMMA- Can we get a non-disabled hum to see if it sounds different to a disabled hum? Go on then.
AUDIENCE- [Louder humming].
EMMA- Ooh, now that is different [laughter].
NIKKI- That’s deeper and ooh.
EMMA- Ooh, that’s very serious. That’s a serious hum [laughter].
NIKKI- I think, I’m going to be honest, the disabled hum was a lot better [laughter].
EMMA- It was a lot more tuneful.
NIKKI- Right, let’s get on with it. It’s a goodie.
EMMA- Okay, get your applause going [applause and cheers] we’re going to introduce the guests. First, comedian Joe Wells.
NIKKI- And we have actor, Sam Brewer [applause and cheers].
EMMA- And comedian Juliette Burton [applause and cheers].
NIKKI- Honestly, we’ve been saying this backstage, but you all look phenomenal. You’ve all got your individual style. I so want those puffy sleeves, Juliette.
JULIETTE- Thanks. One of the production team said that I’m channelling Little Mermaid vibes. I wasn’t aware of it until it was pointed out, and now I feel very seen.
NIKKI- Good.
EMMA- Some say she’s disabled, you know. Just saying.
NIKKI- What, the Little Mermaid? Oh, we had this discussion, didn’t we?
EMMA- See, I bring everything round to disability; that’s the other thing I do.
NIKKI- I wasn’t buying it. Literally everything. And I was very taken by Joe Wells’ cardigan.
JOE- It’s lovely, isn’t it?
EMMA- Oh, a cardigan.
NIKKI- I love it.
JOE- This is great for an audio podcast, isn’t it? [laughter]
NIKKI- Yeah.
EMMA- Is it like one of those bobbly ones?
JULIETTE- It’s very tactile.
EMMA- Is it? Can I feel it? No, I won’t, if you’re not comfortable that’s fine.
JOE- You can feel my cardigan [laughter].
EMMA- Can I feel your cardigan?
JOE- It now feels weird.
SAM- Can I touch it, Joe?
JOE- You can touch my cardigan, yeah.
EMMA- Oh, it’s lovely and soft. And it’s got pockets as well, hasn’t it?
NIKKI- No one ever wants to touch me!
EMMA- Oh, love it. It’s gorgeous. That is soothing.
JOE- It takes days to dry when you wash it.
EMMA- Oh, I bet it does. And I bet you have to put it on a special wash as well, do you?
JOE- I handwash it.
EMMA- Ah!
NIKKI- I’m going to start off, most important question really, who’s got the best show?
EMMA- Why don’t we start with Sam? Ten seconds, have you got the best show?
SAM- Well, look, there’s a lot of shows, and I really believe that everybody brings their own spirit to any kind of festival.
EMMA- Time up, sorry.
NIKKI- Juliette, have you got the best show?
JULIETTE- I couldn’t possibly comment. I’ve never actually watched my show and I’ve not seen these guys yet.
EMMA- You’re so kind.
NIKKI- So good. Joe?
JOE- Well, art is subjective, but I do have the best show, yes.
NIKKI- Amazing. We always had to have one cocky one, didn’t we? [laughter] I love that. Now, Joe, you’re here with your latest standup show, Kind of the Autistics. It’s an amazing name. And you’re at the Banshee Labyrinth, aren’t you?
JOE- The title really makes me laugh, and I came up with it [laughter].
NIKKI- It’s so good.
JOE- I thought someone would stop me calling it King of the Autistics because it’s such an arrogant title, but my agent went, ‘Oh yeah, let’s do that’. And now it’s called King of the Autistics, yeah.
NIKKI- I love it. Now, you’re a standup, you are a writer, a speaker and a podcaster. And when I was reading about you, because I have been stalking you all, my notes said, Joe is autistic and his routine about his non-autistic brother went viral in 2022, racking up a staggering 4.5 million views on social media platforms. And then it said, according to Joe [laughter]. So, I’m wondering how many views did you actually get then, Joe?
JOE- Well, yeah, 4.5 million. But a lot of the people who follow me online are other autistic people, so 4.5 million views could just be four of us that really liked it [laughter].
NIKKI- And I’m going to put this to you as well, Joe Wells, that you do not have a non-autistic brother, do you, hunk?
JOE- This is like some sort of sting operation.
NIKKI- Yeah, I know. It’s not a nice easy-breezy interview this, Joe Wells. No, no, no.
JOE- No. I’ve got a non-autistic sister. But I wanted comedy to challenge stereotypes, and I wanted to challenge the stereotype that it’s only women who can be not autistic. There are lots of non-autistic men, but it often goes undiagnosed in men. So, that’s why I made it a brother rather than a sister.
EMMA- And you’re right, a lot of the people who are diagnosed autistic have been men over the years, so that’s what you’re getting at, isn’t it?
JOE- Yes.
NIKKI- How has your Edinburgh Festival been so far?
JOE- It’s been good. I’m happy to be here. But I’m not doing loads of extra shows. I’m just trying to look after myself a bit.
NIKKI- That’s nice.
JOE- So, my flat is disgusting [laughter]. There’s something libelous written, graffitied on outside. I was about to say what’s graffitied outside my flat but I don’t think I can make that accusation on the ̳. And my bathroom light the switch isn’t in my bathroom, the switch is in next door’s bathroom, so I can only go to the toilet when next door are going to the toilet [laughter].
NIKKI- Amazing.
JOE- So, that’s stressful. But otherwise I’m having a lovely Fringe.
EMMA- Can you not go to the toilet in the dark? It’s pretty easy actually [laughter and applause].
NIKKI- You’re amazing, Emma. You could teach him.
EMMA- I can teach…well. That’s way above my pay grade, sorry.
NIKKI- Shall we do that? So, you were saying there then Joe that you’re looking after yourself. You mean just like mentally and physically not overdoing it, yeah?
JOE- Yeah. I mean, I’m mainly eating takeaway food and beer. But in other years I have taken less care of myself, so comparatively I’m doing all right.
NIKKI- Juliette, you’ve been taking care of yourself as well, haven’t you, at the Fringe?
JULIETTE- I’ve been trying, which doesn’t mean succeeding, but I have been trying to do that in new ways.
NIKKI- It must be so hard here though because one, it’s such an amazing city and it’s so vibrant and it’s so busy, and this job that you have is full on, isn’t it? And it’s a big deal and it’s chaotic I would imagine.
JULIETTE- It is mad, but I’ve been sectioned under the Mental Health Act so I know what madness is.
NIKKI- I love that!
JULIETTE- And this is the good kind. This is the place where madness can breed creativity, creativity can breed madness. And having been diagnosed with 15 different mental health conditions and been in therapy for over 20 years and hospitalised five times this Fringe is amazing. This is like the good stuff.
NIKKI- Easy-breezy.
EMMA- I really like that she’s giving her disability credentials there.
JULIETTE- I just want to name that out there.
EMMA- Put it on the table, I love it. You’re my kind of girl.
NIKKI- We’re going to hear more about that later as well. But Joe, I was going to say, going back to you, how would you describe your comedy to people who haven’t seen you?
JOE- Oh, I don’t know. Sometimes it’s shouty. I find if you shout the jokes louder they’re funnier. And I guess I’m quite interested in different perspectives on neurodivergent, so a lot of what I do comes from sort of trying to flip scripts on things. So, you know, doing stuff about my brother being he’s very severely not autistic [laughter] and talking about things from a different angle. I think the writer Donna Williams is a very important writer to me. I think that everyone should read Donna Williams. And a lot of her stuff was all about that, was about seeing autistic people from another angle, and the way in which our ideas of autisticness have only come from one perspective, and trying to offer different perspectives on that. So, I basically just, yeah, have done what Donna Williams did but try to put jokes on it.
EMMA- Your previous shows have been a lot about politics and the state of the world etc etc. This one, as you said, is called King of the Autistics. Tell me about it and what inspired it.
JOE- Well, I’ve been doing stuff about being autistic for a few years now. And my angle is I think autistic people should have rights, and I believe in the neurodiversity paradigm, so I believe that it’s good that we’ve got different brains and that that makes the world a better place. And I think autistic people should be treated fairly. And whenever you speak up about those things people will say, ‘Well yeah, but you don’t speak for all autistic people. You’re just one person so we don’t really need to listen to you because you don’t speak for all autistic people’. So, I decided that I was king of the autistics [laughter] so that if someone says to me, ‘You don’t speak for all autistic people’, I can go, ‘Well actually I am their king, I speak for all of them’.
EMMA- So, you just made yourself king?
JOE- Yeah, that’s how it works: you just declare yourself.
EMMA- How do the other autistic people feel about that?
JOE- You’ll find in the show it’s very complicated. I’ve stood down as king because the pressures were too much [laughter]. We had an election and there’s a new king; but you have to come to the show to find out who that is.
EMMA- And you got your formal diagnosis as autistic in 2019. What have you learned about yourself since that? And how has that changed how you do things, how you do your comedy etc?
JOE- It’s complicated. What happened was in 2018 my mum gave me a lift, I went for lunch and she gave me a lift home, and as I was getting out of the car she said to me, ‘Oh, by the way, have I ever told you that you’re autistic?’ [laughter]
NIKKI- [Singing] have I ever told you you’re autistic?
JOE- I said, ‘No, you’ve never told me that before’. And she said, ‘Well, why did you think that I used to run that support group for parents of autistic children?’ [laughter] and I was like, ‘Oh yeah, you did do that, didn’t you, mum?’ I wasn’t really paying attention to what she was doing; I was just sort of in my own world really. And yeah, so I’d had this informal diagnosis of what they would have at the time called Asperger’s traits or something like that. And then it had been referred to euphemistically a lot growing up, but I didn’t pick up on those euphemisms. And then as an adult I had a formal diagnosis.
I’ve gone off the track. That wasn’t the question at all, was it? Sorry.
EMMA- Yeah. So, how did that change what you do? So, you used to do comedy about other stuff, now you do comedy about being autistic. So, I suppose one example is you’ve talked about drinking beer, you’ve not always drank alcohol, have you?
JOE- Yeah, I like to get drunk now. That’s what I do at the Edinburgh Fringe! I used to not get drunk because I used to get drunk and then I wouldn’t make eye contact with people and I’d move my hands about and I’d say the wrong thing, and I was very ashamed of who I was. So, I didn’t drink alcohol when I was a teenager. And now I’m older and I have this diagnosis, I’m proud of who I am, and I’m trying to get hammered at every opportunity [laughter].
NIKKI- Love this. A lot of your material does focus on other stuff that makes you angry though, doesn’t it, Joey? Like your dislike of men’s voices I was reading here in the notes, and your own accent. I think you’ve got a lovely voice.
JOE- My own accent? I don’t mind my own accent. I always get nervous doing gigs in Scotland because of my accent because I’ve got the accent that Scottish comedians put on when they want to make fun of English people [laughter]. I’m always self-conscious that Scottish audiences think that I’m like a local guy doing a caricature act. It just wears me down lots of sorts of voices over the top, particularly men’s voices because they are generally sort of lower and more resonating, and it just wears me out. That’s something I have to be conscious of here at the Fringe is I felt awful the other day, and I just went home and was in a…I thought I needed a nap, but I didn’t, I just sat quietly in my room for an hour and it just helped me to sort of reset. There are lots of voices all the time here and that is tiring.
NIKKI- Yeah, it is hectic. You had a rant against e-scooters I was reading as well. What would you put into Room 101? I’d put acrylic nails if that helps.
EMMA- Tinned fish for me.
JOE- You’d put what in?
NIKKI- Long, long acrylic nails.
JOE- Why do you not like long acrylic nails?
NIKKI- I don’t know, it’s just something about them, like on me. I love the on other people, but when I had them on me I just couldn’t do anything. And I’m disabled enough. It’s like they disabled me further.
JOE- Right [laughs].
NIKKI- Do you know what I mean?
JOE- Yeah. But you should see the social model of disability and the world is set up against people with long acrylic nails that’s a social barrier.
NIKKI- What would you put in, Sam?
SAM- What, about the social model or what I hate?
NIKKI- Your Room 101, yeah, if you had to put something in?
EMMA- Room 101 is a room where you put the thing that you hate the most.
NIKKI- Yes.
EMMA- He’s Australian, that’s why I’m telling him that.
SAM- London [laughter].
EMMA- Oh you’re in Scotland, that went down well. Good one. You know your audience. Read the room.
NIKKI- Juliette, what would you put in there?
JULIETTE- Oh god. I wouldn’t put God in there [laughter]. Sorry. I have a whole list of things that make me angry in my show, and so I’m trying to pick which one. I will choose waiters who say, ‘Is it just you?’ when you work into a restaurant on your own [laughter and applause]. Rude. What do you mean, it’s just me? It is all of me. And if I’m asking for a table for one I’m asking for a table for The One, thank you very much. Just me can just go elsewhere and justifiably spend my money there. Just saying.
EMMA- Brilliant. Joe, stay there. Thank you.
NIKKI- Thank you Joe.
EMMA- We’re going to stick with Juliette now, aren’t we?
NIKKI- Yes, because Juliette Burton is here in Edinburgh with her show No Brainer. And it’s at the Gilded Balloon, is it [mispronounces] Teviot?
JULIETTE- Teviot.
NIKKI- Got it wrong, I always do. Teviot Venue. And it’s a solo comedy show, and you’ve been packing out shows since 2015, haven’t you?
JULIETTE- I’ve sold out 2015, 2016, 2017, 2018 every show up in Edinburgh. Before that I was doing solo shows since 2013, double act since 2011. And before that I was in other people’s shows since 2006. And the first time I came to Edinburgh was as a reviewer in 2005, so I am proof that reviewers are just jealous [laughter].
NIKKI- The blurb says that No Brainer isn’t another awareness raising show about mental health, it’s actually a change-making show. Do you want to explain that to me and the audience as well?
JULIETTE- Yes. So, my solo shows have always touched upon my mental health lived experience, which I’ve already alluded to. And in each of them I try to push the conversation forward a little bit more around mental health lived experience. So, it started off with just coming out as I’ve had mental health experiences and I’ve been hospitalised. I then started doing shows about body confidence, having been a UK size 4 and a UK size 20 due to anorexia and binge eating disorder and having all those experiences, being sectioned for anorexia. And then I did a show about kindness and how kindness can change the world. And in that I started speaking about my hallucinations that I had when I was sectioned under the Mental Health Act. So, each time I was trying to push and push and push just to expand our comfort levels of discussion around mental health and mental illness. And finding intersectionality as well with disability, with just anybody who’s living life on the outskirts of what is the socially acceptable norm. And the Fringe is the right place to do that; we’re on the fringe of society, right? So, being able to have these conversations about what’s deemed socially acceptable and unacceptable, what’s deemed socially sane or insane, what is deemed funny or not funny – and many audiences have told me which [laughter]. And I think this is why the Fringe exists is to have those conversations.
This show, however, having raised awareness for so long it is borne of yet another breakdown that I had during the past four years when I haven’t been up in Edinburgh. It wasn’t purely due to the fact that I wasn’t in Edinburgh [laughs]; there was a global something or other that happened as well. And I really struggled again. I was like, I’ve been in therapy for so long, how is this happening again? And I decided I needed to find out what the root of the problem were, how does my brain work, everyone else got into Wordle and banana bread, I got into neuroscience.
NIKKI- Wow.
JULIETTE- And I found it fascinating. I was like there’s some cool stuff in there that probably could help a lot of people. I also was doing some deep, deep therapy into the dark shadowy space in therapy, which I’d been avoiding for all of the time. Because going to therapy turns out is not the same as actually doing therapy.
EMMA- So, what is the difference in that, then?
JULIETTE- I used to go to therapy and perhaps participate in a fairly surface-level engagement of some parts of it. but there are certain things that I wasn’t ready to look at in my past, in my experience that I don’t bring to my shows because that is purely for therapy. Comedy isn’t therapy – apart from the fact that my therapist is on holiday for three weeks at the moment, during Edinburgh Fringe, how dare she! Anyway.
NIKKI- What if you met her here?
JULIETTE- [Laughs] she came to my show in 2019. I think that nowadays we’ve done the awareness raising and nothing really changed, either systemically in funding of services or in terms of governmentally policy, or on an individual basis. For me I was still struggling with my mental wellness, so I decided that I needed to personally change and also highlight the lack of systemic change. And a lot of that is crammed into this show, a lot more angrily. And so you can come along. You’ll laugh a lot. You might learn something, but mainly you’ll be laughing. And that might give you some more tools to help you personally change your own experience of your mental wellness. And it will also make you potentially a little bit angry at the lack of funding that certain governments are not giving the services that are so vitally needed, particularly post the global thing that happened that I’m trying to forget, but I keep talking about.
EMMA- Oh I know, it’s just unavoidable, isn’t it? You said it’s a change making show, you explained what that is. What are the tools that we need to rebuild a healthy brain?
JULIETTE- Ooh, this is a big question.
EMMA- You’ve got 30 seconds. Go! [laughter]
JULIETTE- I would say that my brain did break in as much as colloquially speaking during these last four years I lost all of my tools that I was relying on: my social network, my therapy, my therapeutic relationship, my performing, my income, everything that I thought was certain in life was ripped away. And when that happens understandably the best of us, who perhaps didn’t have any problems before that sort of thing happened, might struggle. For me it wasn’t an immediate thing, but it took some time and then suddenly in 2021 I just became catatonic. I couldn’t leave the house, I didn’t understand what I was going through. I cancelled all of my shows that we’d scraped back because I could not get up on stage and perform.
I then started learning about the brain, and I think it’s important that we understand that we are an amazing mass of cells and programming in our lovely little noggins that they’re just doing their best. Like my mental illnesses are not weaknesses; they are survival mechanisms that have helped me survive overwhelming thoughts and feelings. So, my brain, my polyvagal – I’ve learned a lot about polyvagal theory, which is how the brain connects to the rest of our bodies – and I’ve realised that for some of us our brains have formed slightly differently to others. For me it’s CPTSD, so complex post-traumatic stress disorder, which I see as the roots of the tree of all of my other 15 mental health conditions. I went into the shadowy dark place and for a long while I was buried, but now I’m sprouting. And sometimes – to mix my analogies – you’ve got to have a forest fire for any real growth to happen.
So, having said all of that really worthy stuff I would say I am having so much fun, because coming back here, having been to that dark place, and performing every day on stage it’s just a flipping joy. We can’t swear. It’s such a joy to be here, just being here with audiences laughing. That’s enough. Like all the sold out Laurels, five star reviews and awards, I can tell you that means nothing when you’re sitting at home along with no audiences there to share it with. Being on stage every single day is this beautiful experience of connection with audiences. And that’s all I’m after in life generally.
EMMA- So, laugh and learn about your brain.
NIKKI- Yeah.
JULIETTE- Yes, that’s what I was trying to say in that very lengthy speech I just gave [laughter].
NIKKI- Obviously because you’ve got the whole mental health advocacy and you’ve got your comedy as well, would you be the same person if you didn’t have that comedy? Is the comedy a real support? Is it a help? Would you be a completely different person without the comedy, dealing with what you have to deal with?
JULIETTE- I mean, the honest answer is I don’t know. But I will say that the first time that I started to want to talk to my friends even about my more unusual mental health lived experiences, so my hallucinations, my experiences of suicidal ideation, being able to make them laugh about it eased the tension. It helped them a lot, and it helped break the tension, ease their anxiety. If we’re laughing together we feel less alone. And also it’s the quickest way to change somebody’s mind is telling a joke. If you’re able to do the set-up punchline gag someone might start off that experience listening to you thinking they know where it’s going, but by the end of it they’re laughing and they’ve changed their perspective. So, it’s the most succinct way of changing somebody’s idea of you. And given that I look like the Little Mermaid [laughter] I’m taking that and running with it.
EMMA- Sam, that’s your thing as well, isn’t it, changing people’s minds?
JULIETTE- Looking like the Little Mermaid.
EMMA- Yeah.
SAM- I used to be ginger back in a past time. No, I’m not trying to jump in here over you, but that changing people’s minds thing I think it works really effectively with comedy. Our theatre company, FlawBored, it’s made up of myself, Chloe and Aarion, but a big thing for us was trying to challenge these sort of, we call it like a woke farce, because we’re basically looking at liberal identity politics within corporate environments or artistic environments, and what that’s meant for disabled people.
EMMA- He doesn’t use as big a words in the play though, just to say.
SAM- No, it’s funnier than that [laughter]. Also I’m just going to show my disability cards here: I’m both blind and Australian.
EMMA- Show off [laughter].
SAM- So, I was really confused coming in because I left my stick back in the green room and one of the stage managers said, walk forward. I was like walk where, there’s all these people. And then there’s a microphone in front of me and I’m like argh, what’s going on.
EMMA- And the headphones as well.
SAM- Yeah, where is this!?
EMMA- Well, Juliette thank you so much for telling us all about your show, which sounds absolutely amazing. And I know, I’ve been to see it, it’s got dress-up and glitter, so when you tour again soon everyone should just go and see it.
JULIETTE- Yeah, we will be on tour in September if anyone wants to come.
NIKKI- I’m definitely coming.
JULIETTE- That would be lovely.
NIKKI- Juliette, you’re a superstar, you really are. We have audience questions. That will be a really nice time.
EMMA- Audience questions for any of us, not just Juliette.
NIKKI- We’re going to keep going yet. We’ve got more interviewing to do, but if you’ve got any questions that you would like to ask our guests:
GIDEON- Hi, I’m Gideon. I’ve got cerebral palsy. You’ve all mentioned about sort of the relationship between disabled people and non-disabled people in your work. And I wondered if you’d have any advice for non-disabled people how they might want to talk to disabled people. That stuff people get nervous about being pc or saying the wrong things.
EMMA- Joe?
JOE- Well, I’m autistic so I say the wrong things to everyone [laughter]. Yeah, I think people are, and I think we just need to accept that in order for progress to happen things just have to be messy and people have to say the wrong things and be embarrassing. And actually things are tricky to talk about. We talk about conflicting inclusion needs; if someone needs a space where they can make noise, and someone else needs a space where they’re quiet, it’s difficult for those two people to be in the same space. And inclusion is really difficult. I think progress is in ten years’ time we’ll look back on everything that we’re doing and go, well that wasn’t very good. That’s how you progress.
NIKKI- I’ve got another question. Thank you so much for that, Joe. Thank you for asking that question as well.
MALE- I’ve got a question, I guess for Juliette, but other people feel free to chip in as well. You talked about the highs and the lows – and I can’t wait to go and see your show by the way – but I wonder from your perspective what needs to happen to enable people to better understand mental wellness and just to feel comfortable with it?
JULIETTE- Can I pause for a second and get my stats out of my pocket? Would that be okay?
NIKKI- Do it.
JULIETTE- So, one in six young people now have a diagnosable mental health disorder. That’s five in every classroom. In May alone there were 3,732 urgent referrals to mental health services for under 18s. These are stats by the way from MQ Mental Health Research, an amazing charity. Patients have been hospitalised with – oh god, I’m going to the c-word now – COVID, [laughter] patients who were hospitalised with [coughs] COVID were at much greater risk of developing neuropsychiatric problems than patients admitted for other reasons. And long-COVID – I’m so sorry – is thought to affect 2 million Brits, 3.1% of the population, with symptoms including brain fog, fatigue and depression.
What I’m trying to say is we need funding. We need so much funding for education, intervention, prevention and research, because without research it’s just guesswork. And research is going to be the backbone of lobbying government’s change, changing services, changing diagnostic criteria. And that goes across the board with all disabilities as well.
Also coming to my show I think would really help [laughter and applause].
NIKKI- Now listen, we’ve got time for one more very quick question.
FEMALE- Thanks Juliet. I loved that. And I’m one of the 2 million people with long-COVID who it nearly disabled.
JULIETTE- Welcome.
FEMALE- Thank you. And I – sorry, I’m going to say the c-word as well – but COVID could have given us an opportunity to really rethink health and healthcare and taking our health for granted. And I think the opportunity has been missed and we’ve just gone backwards. The 2 million people who have had long-COVID for the last three plus years are quite surprised, disappointed and appalled at the ableism – to quote what you said earlier – and are up in arms and wanting to change the way people are treated. And I just wonder, listening to you all, I bet many people coming to your shows have some form of disability and are part of that community, and I just wonder how we can get through to people who are not disabled and who are currently thinking COVID’s over, no one else is getting COVID anymore, no one’s getting long-COVID – when we absolutely are. And there is this massive denial about the fact that anyone can go from being healthy to disabled when clearly that’s not the case. I just wonder how we reach out to that audience, because it feels like people have got their fingers in their ears and going, la, la, la, it can’t happen to me.
EMMA- Sam, we’re giving that one to you, because you’re giving out disability ally tattoos at the end of your show.
SAM- Yes. Gimmicks, that’s how you reach out to them [laughter].
NIKKI- It’s hard, it’s hard.
SAM- Yeah. I think it’s a really tough one but it’s also again for us in our experience, and I can only talk from our experience as well, because I think a big goal for FlawBored was making sure we had a shared space of non-disabled and disabled people. And in the show itself we set it up at the very beginning, so non-disabled people watching it would be like, oh what is this woke trash, and then we rip the carpet out from underneath them. And that was a really big intention to sort of trap them.
JULIETTE- We win them over, right? Whether that’s through gimmicks or whether through it’s saying it’s comedy but then changing their minds, or whether it’s through, I don’t know, glittery earrings and beautiful charity shop clothes. Win them around in whatever way possible, but then get them to listen.
NIKKI- Yeah.
JOE- I think that’s what I love about standup is for me standup is a very mainstream artform but you can put radical ideas into it, and you can talk about the social model of disability on a Friday night in a club when everyone’s on a night out. So, that’s why standup particularly appeals to me.
NIKKI- Yeah.
JULIETTE- It’s anger. It’s what Sam said earlier, it’s the anger, the force of anger. If you guys are angry then that’s brilliant because that’s going to be a motivational force that we can all use to our advantage.
NIKKI- And everyone doing their thing. And you guys are certainly doing your thing. Listen, we’re going to move on to Sam now. Sam Brewer, hello darling.
SAM- Hello.
NIKKI- One of the writers and actors in, okay…
SAM- Can’t say the title.
NIKKI- Yeah, he’s in a play…
SAM- Because we can’t say swear words.
NIKKI- …that we cannot tell you what it’s called because it’s got rudey-dudey words in it, okay.
EMMA- Very rudey.
NIKKI- Now, we’ve been through Edpol several times…
EMMA- That’s our legal lot.
NIKKI- …can we shorten it, can we…? No, we can’t. So, we are going to call it it’s an MF Pleasure. Okay.
JULIETTE- Oh, I get it.
SAM- Very clever.
NIKKI- If you want to find out more just google Sam and you’ll know.
SAM- Google FlawBored, not me. Don’t google me.
NIKKI- I googled you Sam.
EMMA- Have you got a murky past?
SAM- No, no murky past here. What are you talking about? [laughter]
NIKKI- Now, you’re playing at Underbelly Friesian, that’s right, isn’t it?
SAM- Yeah, Underbelly Friesian, 2:20pm till the 27th August. That’s the…
JULIETTE- You say that as if it’s like till the end of time [laughter].
SAM- It feels like it. I think everyone was talking about their Edinburgh Fringe experiences before and I’ve got to be honest, it’s probably the most stable living situation I’ve had in a long time [laughter]. Before that my flat back in London there was a random man who was sleeping on my bed who I didn’t know who he was for about a month.
JULIETTE- Really?
SAM- Now I’ve got my own room, it’s pretty great [laughter].
NIKKI- You honestly weren’t worried when you came up with the name for this play about media, were you really?
SAM- No.
NIKKI- No. I get quite excited now because obviously I know Em, and I love her very much, and we’ve been doing this thing for a year now, and I’m like down with blind people, right [laughter]. I get well excited when there’s some technology, or I’m getting excited about audio description.
EMMA- I have my Perkins Brailler with me today.
NIKKI- She had her brailler, yeah.
EMMA- Have you heard of one of those?
NIKKI- It’s an amazing piece of machinery.
EMMA- It’s a type…it’s like…
NIKKI- Straight out of the ‘50s.
EMMA- …an old typewriter, but braille, so six keys. It’s really noisy and it’s really heavy and it’s metal, and everyone in the whole office was salivating over it, ah, this is great.
NIKKI- We were, we were. But I was thinking now that I’m down with blind people and stuff and I know about…
JOE- Sorry, it just connected with me, when you said down with blind people you meant like as in down with the kids, right?
NIKKI- Down with the kids, yeah.
JULIETTE- What did you think?
JOE- I thought it was like a protest.
JULIETTE- Yeah.
JOE- Like they’re taking a real turn [laughter], down with blind people!
JULIETTE- I really thought that too.
EMMA- Did anyone else feel the same? Is everyone going to start going, down with blind people, down with blind people! [laughter]
SAM- Do it! I was at Bristo Square yesterday and there was a table on one half it was deaf people and one half was blind people.
EMMA- Wow.
SAM- Two natural mortal enemies. It was like the Treaty of Versailles, it was so awful.
NIKKI- Tell us a little bit about FlawBored and also tell us about your show.
SAM- So, FlawBored is a disability-led theatre company, we’re a new writing/devising company, which is just a fancy way of saying making work. It was started by Chloe Palmer, Aarian Mehrabani and myself. Aarian and I are both severely sight impaired or blind, and Chloe’s not disabled; but a big thing for us was sort of trying to create this space of sort of disability-led but sort of creating a shared space between disabled and non-disabled people. And this show it’s an MF Pleasure.
EMMA- Well done.
SAM- That was written by the three of us and our director, Josh Roach. But the main crux of the show is basically us selling identity and the way that identity has been monetised nowadays. And I don’t think with disabled identity that you can necessarily monetise that. So, the whole purpose of the show is a PR company where somebody’s done an ableism and to try and solve the issue, they basically try to create disability as the next cultural caché that people are scrambling for. So, it sort of climaxes to the point where people are trying to opt in to being blind and stuff like that.
NIKKI- Love this.
SAM- Which leads to horrific results. But the funniest part about horrific results is any time blind people are watching it they’re laughing. Everyone else is really uncomfortable [laughter].
EMMA- I was really uncomfortable with that.
NIKKI- We need to explain.
EMMA- You see, not all blind people are the same.
SAM- Not all blind people are the same; I have that tattooed on my back.
NIKKI- Ems, we do need, because you know I was a bit unsure of the word ableism for a while and you had to teach me.
EMMA- Oh god.
NIKKI- What is doing an ableism?
EMMA- Sam?
NIKKI- Yeah, Sam, over to you.
EMMA- Explain ableism.
SAM- Oh…
EMMA- I’m sure we can do it together.
SAM- Yeah.
EMMA- It’s…
SAM- One word at a time:
EMMA- It’s doing…
SAM- …something…
EMMA- …that…
SAM- …is…
EMMA- …upsetting…
SAM- …or…
EMMA- …discriminatory…
SAM- …to…
EMMA- …disabled…
SAM- …people.
NIKKI- Oh, that was really good [applause].
EMMA- Teamwork. Thank you. So, the branding company did an ableism and they decided, the company decided that blindness was the new thing, and you had an influencer getting people to show people how to have a shower blind and all that.
SAM- Yeah, and also basically selling…there’s a line in it like: You’re a straight white, non-disabled man with a steady job and, I don’t know, a 40k salary. Yeah? Well, you’ve got nothing to complain about. So, with us they can feel, you know, what, feel marginalised. So, it’s the selling the idea of marginalisation to non-disabled people so they can complain about something in that sense.
EMMA- And you had a moment yourself when you were in a call centre when you were really young.
SAM- Yeah.
EMMA- What happened there?
SAM- Sort of like the genesis for this idea sort of like comes from all of our experiences as a team when writing this. But my personal experience with the corporate world and being disabled, I remember working at a call centre years and years ago back in Australia, and I was doing the briefing for something and I was looking really closely at the briefing paper – because if I need to read something I’ll hold it super close to my face so it looks like I’m smelling it. And the person who was the boss of the call centre had a big fur coat, it looked very tacky, but she basically went like, ‘What are you doing? We don’t hire blind people here!’ and everyone who knew me they just clenched up because they heard what she just said. And then I just sat there silently, because I would have been like 18 years old and I didn’t have the kind of vocabulary I have now to stand up for myself. But within a week at that same call centre they did a diversity and inclusion workshop with disabled people, and it was just a get stuffed moment from me. And that sort of stuff and that sort of righteous anger has motivated us as a group to make this show.
NIKKI- Yeah. Do you mind me talking about your diagnosis, Sam?
SAM- Yeah, okay. Basically I have a thing called Knobloch syndrome. It’s a terrible, terrible name [laughter]. And when they gave it to me – well, the doctors didn’t give it to me [laughter]…
EMMA- They gifted you Knobloch syndrome.
SAM- Yeah. When I moved to the UK I just wanted to register as severely sight impaired so I could get a free Oyster Card so I could get free transport. And they were like, ‘You know you’re going to deaf as well?’ I was like ‘What! No one’s told me that!’ I was here when I was 26. I spent six months basically waiting for a second appointment, went back in and they were like, ‘Oh no, you’re not going to go deaf, you’ve just got this other thing called Knobloch syndrome’ and I was like, ‘Okay, what does that mean?’ because immediately you think where my mind’s going to go. And basically the doctor who was like this professor, he was a very celebrated professor, all the walls at this Moorfields Eye Hospital are like the partition walls you have in like insurance companies so people can hold onto them and peek over, and he peeks over and he shouts, ‘Sharon! Sharon! Come here!’ and another doctor comes running into the partition office. ‘Feel the back of his skull!’ and they start rubbing the back of my head. And, ‘He’s got Knobloch syndrome!’ and I’m like ‘What does this mean? No one’s told me anything!’ And the reason they weren’t able to diagnose it is usually with Knobloch syndrome the back of your skull is slightly concaved in. so, then Sharon peers over the partition, calls for Steve, Steve comes in, he feels the back of my skull, then Steve calls for Chris, Chris comes in and then Chris takes a photo of me. And then I got my Oyster Card for free transport [laughter].
EMMA- Yay, good one.
NIKKI- I love it. I love this whole idea of disability humour, because for me growing up I’ve always been disabled so for me it was the early stages when I was a bit of a dufuss, let’s say that, I’d be cracking all the gags. Actually even up until recently I’d be like, ‘Oh yeah, I’m like Madge from Benidorm’. Have you ever seen Benidorm? Madge, the cigarette smoking on the scooter.
EMMA- They don’t know what to do with her, no she isn’t, but she says she is. I don’t know.
NIKKI- I wonder with humour is it a way to like…for me it was a way to sort of protect myself in the early stages. I was like laughing at myself in a way. But your kind of disability humour seems like you want to educate people as well, bring out the absurdity of many things but also through that educate?
SAM- I completely agree. I think for us there’s one thing where it’s this kind of punk attitude where it’s an external driving force. So, the show it teaches you something but it’s not teaching you something in like, well did you know that the social model of disability is this. It’s very much using, like anger is a gift in some capacities, and that can really motivate and help you to create something quite powerful to showcase to other people. The work is so powerful! I don’t mean it like that, but I think that trying to externalise that frustration or externalise the frustrations you’ve had about yourself onto society and sharing that with an audience. Because the reason we go to shows is because A, I want to laugh and B, also for theatre especially it’s empathy. And I think that’s the main reason people watch theatre.
NIKKI- But you don’t sound like, all of you don’t sound like you’re going for the easy win, do you know what I mean, when it comes to the laugh? You’re so much more than that. Does that make sense?
JULIETTE- I love what Sam said about the, I used to use #mentalhealth in lots of my publicity and stuff, Insta and other social media, and suddenly it became this thing to slap on a t-shirt and then sell to people with mental wellness. And it becomes this commercialised, capitalised thing which is like what’s happening here, there’s actual people who are still segregated and ostracised and suddenly it becomes this kind of thing.
NIKKI- Yeah.
JULIETTE- I don’t know. I don’t have any solutions to that; I just have a comedy show [laughter]. But I think that's part of the anger, like you’re saying, that’s where that anger resonates from. And when I first started out in comedy somebody told me, ‘Comedy is all about what makes you angry’ and I was like, ‘Oh no, I never get angry. Holding onto anger is like holding onto hot coals expecting somebody else to get hurt’. Do you know what makes me angry? Pass to me, she’s an idiot [laughter].
NIKKI- Oh you guys have been brilliant, thank you.
EMMA- Absolutely.
NIKKI- Juliette Burton, Joe Wells, Sam Brewer [applause].
EMMA- Fantastic. This is the anger episode I feel.
NIKKI- Yeah.
EMMA- Thank you so much to our guests again.
NIKKI- Yeah, it’s been brilliant.
EMMA- Thank you to our audience here and at home. People can get in touch with us, can’t they?
NIKKI- Yeah, they can: accessall@bbc.co.uk. Don’t ask me what the WhatsApp number is because I cannot remember.
EMMA- 0330 123 9480.
NIKKI- We like text messages, or voice notes even better. Subscribe, don’t forget to subscribe.
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NIKKI- @̳AccessAll on Twitter.
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NIKKI- Or X or whatever it is. You’ve been a wonderful audience. Thank you so much.
EMMA- Thank you.
NIKKI- And this has been Access All [applause].
EMMA- Blindy wave, blindy wave.
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Access All: Disability News and Mental Health
Weekly podcast about mental health, wellbeing and disabled people.