Transcript: The woman who experiences pain as red and rectangular - Ouch Talk Show August 2017

This is a full transcript of 'The woman who experiences pain as red and rectangular' as presented by Kate Monaghan and Simon Minty

SIMON -Hello and welcome to the Ouch talk show, recorded at the Edinburgh Fringe Festival. This month we have a playwright who can see and hear her pain, a funny woman with cerebral palsy and the Tourettes Hero performing Samuel Beckett with added biscuits. I'm Simon Minty.

KATE - And I'm Kate Monaghan. You'll find us on the Ouch podcast feed the first Friday of every month shooting the breeze about disability stuff with a merry band of guests who know their onions.

SIMON - Every other week you'll hear shorter podcasts from the Ouch team with a mix of interviews and timely chat.

KATE - If you're streaming this over the web then you might like to know we're available via podcast too, meaning you can subscribe and have Ouch arrive directly to your phone or tablet whenever a new show is published. We do ask one small thing though, please leave us a review wherever you get your podcasts from because reviews help people find us.

SIMON - Tell your friends and followers about us on social media too. Share us on Facebook, Twitter, LinkedIn, Instagram, Snapchat and Myspace.

KATE - Myspace? Are you living in the noughties? You haven't moved on yet?

SIMON - I'm sorry, I need to catch up. This is the most loveliest venue we've probably done an Ouch show in isn't it?

KATE - I know, I love it, it's beautiful. So we're in the BBC Festival Gardens is where we are. We're surrounded by colourful fencing and beautiful lighting and we're in a sort of grassy area with a children's play area next to us, and then it's Edinburgh, so it's raining.

SIMON - It's a sort of British picnic area which has got a cover for the rain because that's what's happening. But just the sound and the atmosphere's just really lovely.

KATE - I know, it's exciting. Anyway, what have you been doing during August Simon?

SIMON - I've been away, I've been on the road all month. Two quick bits, AMI, the people who take our show over in Toronto in Canada…

KATE - You can listen to us in Canada?

SIMON - You bet you can, and I went to visit them and I was on their show.

KATE - Oh wow.

SIMON - And they've got a podcast and I talked about us and what we do and it was really lovely to meet them in person.

KATE - Did you talk about me?

SIMON - I did talk about you.

KATE - All good things?

SIMON - Very… I can't remember. I can't remember.

KATE - Oh…!

SIMON - Yes, they were very good things. [laughs] Of course they were. You were looking really serious at me then. Of course they were, they think you and I are the best-est buddies ever.

KATE - Well we are.

SIMON - Yeah, very much so. The other bit was in Toronto, I was going out and about scooting and you know, people look at me because I'm short and a scooter and all that stuff, everyone just smiled and I smiled back, it was so lovely, I just couldn't stop smiling.

KATE - Were they smiling at you because they were interested in you? Did they take your picture?

SIMON - No they didn't take my picture thankfully, and I've heard a few friends, the filming is getting really out of hand.

KATE - Because you are a short person.

SIMON - The smiles weren't patronising, "Oh look at him, bless," I know that smile, it wasn't that, this was eh, we're happy, you're happy, nice to see you on the street, it was just kind of cool and relaxed and… Oh, it just had a very nice vibe, I like Toronto people.

KATE - What did you mean the photos are getting worse?

SIMON - Because in the olden days we used to say, when people stared at us we'd say, "Oh, yeah take a photo, it lasts longer," now they do because they've got camera phones. And then I had a friend recently who's been filmed three times by the same person after telling them to stop. And that's kind of out of order. There's no shame. Why are people not knowing the boundaries?

KATE - Why is that do you think?

SIMON - Because they're weird.

KATE - Okay.

SIMON - That's why we have short people on television to try and get them over this 'excitement'.

KATE - Yeah.

SIMON - Who do you show it to for crying out loud?

KATE - I don't know.

SIMON - Anyhow, what about you, how's your month been?

KATE - Yeah, it's been good, I've been away.

SIMON - Where did you go?

KATE - I went to Alderney in the Channel Islands which was delightful. But I came up to Edinburgh yesterday and I was driven mad by Edinburgh, and to be fair it's not just Edinburgh. So normally in London I know my way around, I can get around buses, tubes, mainly driving, I came up on the train so I don't have my car here, so I had to either jump in a cab or do the short walk when I knew it was a short walk. So I'd Google Map place to place and see five minutes, right I'm fine with that, follow the directions and then you come to this massive flight of stairs. And it's like three levels up and I just am like now what am I supposed to do? How am I supposed to…? Come on mappy, techie people, put a sign up, you know, put something up that says this is going to involve stairs.

SIMON - Edinburgh is renowned for cobble stones and sudden flights of stairs because it's very hilly and up and down but you're saying there's no information when you're…?

KATE - No, when you map it, so on Google Maps or any other mapping system on your phone…

SIMON - Yeah there's loads aren't there, we all use all the other ones, yeah, yeah.

KATE - We all use any other one. It just says this is how you walk there and it doesn't say this will involve seventeen flights of stairs.

SIMON - Which Transport for London, they tell you when there's steps and whatever. I was going to say it's great to have a scooter round Edinburgh because I never need cabs, it's a small enough city, I just scoot around all day but like if I hit the steps that's a nightmare.

KATE - Yeah, because then I'm like well now I have to go a ten minute diversion round to where I need to be, I should have just got in a flipping cab.

SIMON - Okay, I'm sorry about that, that sounds quite stressful. So it's a bit different this month, as we've already mentioned. Instead of the guests all sitting round the table for the whole show they're going to be popping by our picnic table for a drink and a natter. In about fifteen minutes 'Last Leg' comedy writer and stand-up comedian with cerebral palsy Rosie Jones will take a look back on the month's disability news stories.

KATE - Jess Thom, writer and performer with Tourette's syndrome joins us for a chat about Samuel Beckett and relaxed performances. And we'll finish with a poem by Neil Hilborn, that guy whose poem about OCD has had over 62 million views on YouTube to date.

SIMON - But first, last month Kate's descriptions of her constant high pain levels kind of took me a little bit by surprise, just kind of that they're everywhere. Now, you know, I know a bit about pain, I had my hip replaced because of it, but I still can't quite get my head around your experiences.

KATE - Well yeah, I mean as I may or may not have mentioned, or as Simon alluded to, whinged about a lot last month, I've got Ehlers-Danlos syndrome which is a connective tissue disorder which means I'm in constant pain in almost all of my joints as a result, and earlier I met up with Rachel Bagshaw who has been analysing all aspects of her chronic pain for 'The Shape of the Pain', a new play which gives audiences insight into how living with it affects everything we do. I started by asking Rachel how she came to be in pain.

RACHEL - I have had chronic pain since I was nineteen, I had a running accident when I was nineteen which started what at first was a kind of really tiny running injury and then developed into a neuropathic pain disorder called complex regional pain syndrome.

KATE - So there was nothing wrong with you before the age of nineteen?

RACHEL - I also have Ehlers-Danlos syndrome hypermobility which we didn't know at the time, so I was fairly prone to kind of accidents and sprained ankles and kind of dislocations but nobody had picked up what that was, and they now think that there's a connection between people with EDS who then might have a really tiny small injury and then also develop neuropathic pain.

KATE - So what is this CRPS, neuropathic pain?

RACHEL - CRPS, complex regional pain syndrome, is a condition, it is a neuropathic pain disorder which means it is located in the brain. It's basically that the brain is sending pain signals to an area of my body, in my case my right leg, which are totally unnecessary. And my brain can't stop doing that, it has got itself into a pain loop, a riff of pain that it just can't stop.

KATE - So it means that your brain is saying there's pain when there isn't pain?

RACHEL - Yeah it's… Yes, a simplified version but essentially yes, I mean there are some physiological responses as well so it affects blood flow and muscle tone and it does affect the use of the leg, but it fundamentally is pain signals with no real source to them.

KATE - I talked in the last podcast about my pain and how I try and cope with it, because I also have chronic pain, but how do you try and cope with this pain? Can painkillers help?

RACHEL - Not really, I mean I do take a little mixture of medication, but actually these days I find mindfulness, meditation and working, those are the things that really work for me.

KATE - Now one thing I always find is that if I talk about pain, the pain gets worse because you're suddenly thinking about it. Is that the same for you?

RACHEL - Yes absolutely, and I think again with neuropathic pain in particular it's a very, very direct link that talking about the pain is actually firing off those signals in the brain. The word pain, talking about the affected limb, the awareness of the limb, can just increase the heightened sensation. It's posed quite a challenge in terms of making a piece of work which is about pain.

KATE - Yeah, that seems crazy.

RACHEL - Yeah, it has felt like perhaps not the finest decision of my life at points [laughs], we kind of set off on this little journey trying to figure out how we talked about pain and I knew I wanted to make a show that was exploring the way that I lived with pain and also the way that I experience it which is quite particular, I kind of see it and hear it, so I see it as colours and I hear it as sounds.

KATE - Well let's hear a bit of that sound from 'The Shape of the Pain.'

[intense buzzing sound]

RACHEL - And so we wanted to try and unpick that and work out how that might inform a theatrical language, how we might be able to make a show out of that, and at first I actually felt it was really kind of simple and possible and it was just the two of us having some chats and that was really straightforward, once we got into making the show itself, so once we started bringing the sound in and the lighting as well, being in that environment that was like a constant recreation of what the pain experience feels like for me I did kind of doubt my own decision to do this to myself. [laughs]

KATE - But the show isn't just about pain is it, it's a love story?

RACHEL - Yeah, yeah. So the show kind of weaves my own lived experience of managing this quite odd set of circumstances with a fictional love story, it's girl meets boy, they fall in love, they move in together, they kind of wonder whether they can make it work. It's a story that we all know and that then gave us a really clear route in to how does the pain operate in that story. And for the audience I think that gives them a place to feel kind of secure in something, we know what that story is and so we can feel really secure in the love story parts of the show, and then the kind of other world of it, the pain and the way that we express the pain through sound and through light and projection doesn't feel so far away I think.

KATE - One of the things that kind of resonated with me was the idea that you want somebody to understand you, you want somebody to really get it, but then you hate that the fact that you have to have somebody who understands and gets it and how the pain is almost like a third person within that relationship. Is that something that you've experienced personally?

RACHEL - Yeah, absolutely. And I would say that's true of my own relationship, that the pain is this other and we call it 'the pain' as this sort of other presence in our lives, in our relationship, the kind of struggle of somebody understanding it can mean that then it just becomes part of the way that you live your lives and then it what feels like gets ignored. You want that telepathy so much, you want the person, your loved one, to understand it so much that they just instinctively know what's going on with it, but then that can mean that they sort of just ignore it and again the sort of push-pull of that, the kind of two ends of that spectrum.

KATE - And another thing that…

RACHEL - I'm very difficult to live with basically is what the show is about.

KATE - Oh, aren't we all! [laughs] The other thing that I found really interesting was the "Have you tried…?" you know, "have you tried this, have you tried that, have you tried thinking about that the pain's not there? Have you tried thinking about the pain?" What are the most ridiculous things people have asked you if you've tried?

RACHEL - So we've got very long lists in the show of 'Have you trieds'. I'm trying to think of some really ridiculous things, but I mean things I have tried are hyperbaric oxygen chambers, visualisation, I have tried a whole raft of, list of drugs, some of which are legal, some of which are less so and again, that thing of sort of still frequently getting offers of being prayed for and candles lit for me, and well-meaning suggestions from people who still think that after nearly twenty years of living with this that there must be something that I haven't tried, there must be.

KATE - Yeah, people don't like the idea that there's not a cure I guess, but then that leads to so much frustration on our parts, living with that and having to hear it all the time.

RACHEL - Yeah. How about you? What's the most ridiculous thing that you've had suggested to you?

KATE - I think when I was on a date a guy… It was a first date, we didn't get to a second obviously because he said to me, "Have you tried… a special diet, I will cook for you and you will get better." And I thought yeah. No. [laughs] No thank you. I really enjoyed the part where you talked about the night you, or your character… I never know whether it's you or your character, but your character in the play sort of said, "oh, it was a night out, it's like a confluence of events that mean you can have one good night out where you don't care, you don't think about the next day, you're well enough to just go with it and meet somebody." I always find that myself you've got to be in exactly the right place to have a good night out.

RACHEL - I don't know anymore what it's like not to be in pain but sometimes I just don't want to think about it. Sometimes I want to actively tell it to get lost, put it in a box and go out and have a really great night and basically pretend it's not there, but of course it is always there sort of tapping you on the shoulder trying to remind you of its presence.

KATE - And do you find that that's difficult when you're having that kind of night out and you meet somebody and then you have to explain, well that's not really the reality of who I am, the reality is really quite different and that was a one off?

RACHEL - So one of the things I'm getting a lot actually, particularly this week for some reason, I've had this said to me a lot this week, which is people talking about the show and going, "So you're in pain all the time?" "Yes." "But you're smiling, how can you be smiling?" as though somehow those two things are completely mutually exclusive, it is not possible to be in pain, in this much pain, whatever that means, and yet still be sitting here smiling, that those two things are just, yeah totally incompatible. And I think that's also, again this is kind of one of the things we talk about in the show but also one of the things we were really keen to explore in the show is about perception. We cannot actually understand someone else's pain because it is entirely subjective, pain is always going to be a subjective experience.

KATE - Well yeah, I mean it's interesting because I don't see pain, I don't hear pain, I describe it, the only way I can describe it is as a noise, but I don't see it, I don't hear it, I just feel it. So I mean yeah, our experiences are probably similar in what we're feeling, but the experience of it is very different.

RACHEL - Yeah, so I suppose a way of describing the way that I kind of see and hear pain would be as a type of synaesthesia, so as a sort of misplaced senses experience, and again there's a little pocket of research that suggests that people with neuropathic pain may be prone to experiencing it as sound and colour. But equally it might be that people who are synesthetes are more prone to developing neuropathic pain, we're not entirely sure, and it might be that I already was a synesthete prior to all of this happening, but because this happened when I was nineteen I'm not sure I kind of knew myself well enough to say that that's how I viewed the world. So the metaphors in the show I suppose, the red rectangle or the sounds are not theatrical metaphors, they are actually how I experience the pain, they are literally the things that are in my head.

KATE - So did you play the sounds? Like did you just hear loads and loads of different sounds and then you went, that's the one that the pain sounds like?

RACHEL - Yeah, so we worked with a sound artist called Melanie Wilson and Mel and I spent quite a lot of time kind of creating a sound palette, so we would sit and listen to sounds together and I would colour code them, so according to the colours that I see. So there's a spectrum of pain that goes from kind of yellow through orange through red through black, and black pain is like sort of so far down the pain that there's no colour because there can't be. And so we spent quite a long time pulling all of that apart and colour coding and then Mel composed, by painting with colours I suppose, the sound design emerged out of that. I think one of the tensions for us in terms of making the show was that some of the sounds are kind of theatrical sound design, a lot of them, because what became really apparent is that the stuff that sounds exactly like my head didn't necessarily translate to an audience, so it was sort of again trying to find the best theatrical language to communicate this experience.

KATE - You talked about when the pain gets to that black level. What happens to you when that pain gets that bad?

RACHEL - I have an out of body experience, I have another little place that I go to that is up and to the left of me, it's a little bubble, and when the pain is really, really bad I take myself out of my body and I go to this other little place. I know that I am still in my body and I know that the pain is still going on, but I'm also looking outside of myself down at this other being in pain and I know that's me but I also am sort of separate from it. So it's a disassociation, and again there's a whole load of research about situations in which people in extreme duress also disassociate.

So it's a fairly common phenomenon that people experience. Again, I think there's something in that which sort of really gets to the crux of what it means to be human and what it means to live, that my mind's way of surviving something so extreme is to actually try and take myself out of my own body, and again that's sort of fragmenting of self I suppose that that does. Which is the most real version of me? Is it the one that's experiencing the pain? Is it the one that's protecting me by taking myself out of my body? I don't know, I mean I'm both of those and all of those and all the bits in between.

KATE - And is it a good thing? Is it a bad thing to do it?

RACHEL - I think it's a good thing as far as I'm concerned, it is a coping strategy, I don't know whether I've trained myself to do it, it is a way of surviving it when the pain's really, really bad.

KATE - Does it mean that as someone who has chronic pain you're like oh, other pain is fine, or is it amplified worse?

RACHEL - I think a little bit of both, so with CRPS sometimes other injuries can cause spreads so other surgery has caused spreads for me so it's really easy for that to cause a trigger. In terms of dealing with other pain I've been through childbirth twice, I've got two children, and actually I think I don't know whether I experienced the pain differently from another woman, and again, I'll never be able to know that, but I think because I cope with pain on a daily basis I had a little tool bag with me, I was able to pull on the stuff that I already have in that tool bag in order to get through that experience.

And actually on the pain chart CRPS there's a kind of McGill pain scale thing and on that CRPS comes higher than childbirth so I was kind of like oh well it's a breeze then, it's fine. It was definitely not a breeze, I mean I would not advise it as a pleasurable experience but I did have a little set of strategies already that made it easier. And actually one of those was that in my second labour my husband had an hour and a half nap just before our second baby was born and actually it was the most sort of delightful part of the whole thing [laughs] because I was so used to dealing with my own body, so used to being able to process that on my own and to rely on the way that my mind and my brain and my body can all work together to get me through something really extreme. So yeah, all of that came in pretty handy when it came to childbirth.

KATE - So where can we see 'The Shape of the Pain'?

RACHEL - So we've just come to our end of the run at the Fringe but the show will be touring next year and also doing a run at Battersea Arts Centre.

KATE - Cool. Well I will be saying anyone who wants to understand more about pain definitely go and see this show. I probably won't see it again but I'm glad I saw it once. Thank you very much Rachel, it was lovely to meet you.

RACHEL - You too, thank you.

SIMON - You know what, that piece, it felt like one of Ouch's regular take over podcasts where we put a couple of people with the same impairment in a room and get them answering questions that people are sort of too afraid to ask them. Look out for the next official take over on being autistic, it's coming up soon on the Ouch podcast feed.

KATE - Now then, when 'The Last Leg' started on Channel 4 during the 2012 Paralympic Games we at Ouch spent the first few episodes shouting, "We've been doing that brand of disability comedy for years!" at our screens, but we're not bitter, no, no, no, no, honest, in fact Rosie Jones, one of the show's comedy writing brains is with us in our garden. Hello Rosie.

ROSIE - Hello.

KATE - How are you today?

ROSIE - I'm really good. How are you?

KATE - I'm very well thank you.

ROSIE - Good.

SIMON - Now the Royal Television Society describe you in an article as a highly in demand researcher, a critically acclaimed stand-up and a globetrotting TV dynamo.

ROSIE - Yeah, all true.

SIMON - What does that mean? Translate that for me.

ROSIE - Basically I'm a legend.

SIMON - [laughs] In your own lifetime.

ROSIE - Yeah. No, I tend to do everything I love doing, so I love comedy, I'm a comedian. I love TV, I work in TV, and basically I'm living the dream.

KATE - So Rosie, tell me a bit about your show, what have you been doing up here in Edinburgh.

ROSIE - So it's my first time at the Fringe and I thought I'd start with a little 40 minute show.

SIMON - Four zero minutes?

ROSIE - Yeah, four zero. So ((if you speed down 0:24:03?)) my voice you hear two jokes and that's the first joke, [laughter] but it's about really I've been finding my feet and I feel a lot more confident performing but basically, like Kate said, it is horrible. I've walked up hill for three weeks, I don't know how high I am, I'm very high.

KATE - And what did you do on 'The Last Leg'?

ROSIE - So I'm a researcher so I come up with ideas and I basically make it all happen.

SIMON - And the bit I still love about 'The Last Leg', I think it's faded a bit now, but when you get the non-disabled stand-ups come on, at the beginning they used to be a bit anxious didn't they?

ROSIE - Yeah, yeah.

SIMON - And now they're kind of cool and relaxed and I love that kind of, I don't know, the shift in balance, it's just a joy of a show.

ROSIE - Yeah. I love how they've made it cool to be disabled.

SIMON - And for our international listeners maybe like in Canada…

KATE - Hey, AMI.

SIMON - How would you describe 'The Last Leg' in a sentence?

ROSIE - So 'The Last Leg' started out with the Paralympics and it was a daily show to round up the sporting news but people liked it so much it turned into a weekly show on Friday night, not just about disability but about topical news.

SIMON - Was it London 2012?

ROSIE - Yeah.

SIMON - And it was on every night. It's irreverent isn't it, it has that little glint in the eye and tongue in cheek and lots of other things.

ROSIE - And it was great how almost overnight it became the show that everyone wants to watch.

SIMON - Yeah, absolutely. So you're here to talk about the disability news, what's your first story Rosie?

ROSIE - Yeah, so my first story is about a boy with cerebral palsy called Kyle Gunn and he's nineteen from Scotland and he wanted to do a journalism course - of course he did, he's ambitious. They told him no, you can't do that because you can't write shorthand.

KATE - And what's shorthand?

ROSIE - So shorthand as a journalist, well they used to use, I don't think they all use it now, and it's to write very quickly and to us it would look like a lot of symbols but they know what it means.

SIMON - My mum, who's obviously a bit older, she does shorthand from her secretarial days.

ROSIE - Really?

SIMON - And even now she'll write shopping lists in shorthand. But okay, so…

ROSIE - I mean shorthand was really useful back in the day but now we have so much technology, we've got computers, Dictaphones, really you don't need shorthand.

SIMON - So when we look at reasonable adjustments there's always a bit which says is this an essential criteria or not, and you and other people are saying this isn't essential anymore.

ROSIE - No, it's not at all. I went to Uni and I did an English degree and my Uni were so great in creating adjustments for me because they got me a note taker for every lecture which was really great.

KATE - Did that mean you could miss the lecture and just send the note taker? That's what I would have done. [laughs]

ROSIE - Well… No, I tell you what I did, I partied till seven am, turned up at nine am, sat at the back and fell asleep.

SIMON - And is it true the note taker got a first class honours degree in English?

ROSIE - Yes, she did! [laughs]

KATE - So why was this such a big story?

ROSIE - It's big because in 2017 we shouldn't still be fighting for this and the bigger story is the lack of disabled people in the media and we should be encouraging more disabled people to come into this industry, not making it harder for them.

SIMON - So it sounds to me that the National Council was just kind of twenty, thirty years behind. What's the latest, do you know if he's been allowed on the course? Have they made an adjustment?

ROSIE - Yeah, so at the moment they're still waiting but he's getting a lot of support on Twitter and I am optimistic, I think hopefully they'll allow him on the course, because it's so great as well, he's already going to football matches and interviewing the players and the managers, he's got that…

SIMON - So he's a journalist.

KATE - He's already doing it isn't he?

ROSIE - Yeah, he is, yeah.

KATE - Yeah. And I think they are doing the research now and they are saying that perhaps…

SIMON - Great. Well I hope they're taking the notes in shorthand.

KATE - Yeah, they're going to clarify their position. What's your next story Rosie?

ROSIE - So my next one is about Liz Carr. Did you hear?

SIMON - Yes. Who is she, for those who don't know?

KATE - A friend of the show.

ROSIE - Yes she is, she's a disabled activist, a stand-up comedian and actress who's currently in 'Silent Witness'.

SIMON - That's BBC as well, yeah.

KATE - And ex BBC Ouch podcast presenter.

SIMON - Yes, she used to sit in these hot seats.

KATE - She did.

SIMON - That's the biggest introduction. Tell us about her.

ROSIE - So last week she was out with her carer and a man unfortunately came over to her and stabbed her in the head with a pair of scissors, which is awful.

KATE - It just sounds incredible. Is she okay?

ROSIE - Yeah, and luckily she only has a few scratches, but in true Liz Carr style she's already trying to make light of it and said that it was like being attacked by Edward Scissorhands.

SIMON - Which I've always wondered, is he disabled? I think he might be. But, I know this isn't the point of the story but the role of carer, or would we say personal assistant, her PA, her support worker, this was the critical bit, the bit I saw was the support worker tried to be a barrier between and had to physically fight.

ROSIE - Tried to stop them and then they got injured as well. This story has really hit home for me because as a disabled person you don't want to feel like a victim but you are.

SIMON - Well there's that horrible word. I always think authorities and security services, we are seen as vulnerable, there's that kind of catch all term that we are vulnerable, which bugs me.

ROSIE - Yeah.

SIMON - I mean I use my mobility scooter, Liz uses a wheelchair, you've got CP, and it's very visible. I've always thought there's a sort of bubble around us that nobody will touch me because of that, but…

ROSIE - Yes, I'm just so pleased that Liz is okay.

SIMON - I mean that's the bit, even if she is laughing, she'll probably make a show out of it knowing Liz, but it's the point, it could have been so different and that's terrifying, the fact that she's just got a scratch, that's about luck.

KATE - So what's next for you then Rosie?

ROSIE - I've got a big acting job, but I don't think I can say what it is.

KATE - Oh come on, you can tell us, you're with friends.

SIMON - Oh, we're at Edinburgh, this is TV land, come on.

ROSIE - Well you should see me on TV next year.

KATE - In a soap? In a…?

SIMON - Will we laugh?

ROSIE - No you won't…

SIMON - How many syllables?

KATE - Is it a soap?

ROSIE - [laughs] So it's a very new venture for me.

KATE - Are you the new Doctor Who?

ROSIE - Oh, don't tell anyone.

KATE - That was brilliant, thank you.

ROSIE - Thank you so much.

SIMON - And good luck with the rest of your time here.

ROSIE - Thank you.

JESS - One leg with a sheepdog in his hand.

SIMON - You may already be able to hear our next guest and you'll probably recognise her as Jess Thom, also known as Tourettes Hero. Welcome Jess.

JESS - Ta-da! Bryan Adams. Okay, I'm not Bryan Adams. [laughs] Biscuit.

KATE - Thanks for clearing that up for us. Now, Jess is one of the 10% of people with Tourettes who have copro…

JESS - Coprolalia.

KATE - Coprolalia. This means that some of her vocal tics are sweary but her most regular tic is…

JESS - Biscuit.

KATE - …biscuit.

JESS - Hedgehog.

KATE - Which she says a thousand times a day.

JESS - Biscuit.

SIMON - Following a wildly successful world tour of her comedy, 'Backstage in Biscuit Land' Jess has been performing the Samuel Beckett play, 'Not I' in Edinburgh this summer.

JESS - Biscuit.

SIMON - Now I'm going to lead on this interview and you're going to just let me get on with it Kate.

KATE - All right, I'll try and keep my mouth shut.

SIMON - This is a rarity, let's see how we go.

JESS - Cats. Biscuit. Hedgehog.

SIMON - So for the non Beckett experts among us describe the play in its traditional form Jess, and how has it been reasonably adjusted for you?

JESS - Biscuit. 'Not I' biscuit is a late work of Samuel Beckett's, it's a short play and it is a mouth, a disembodied mouth in a total darkness, biscuit, that has to deliver a monologue really quickly, biscuit, and urgently, biscuit, and it's a woman talking about her life, biscuit, describing flashes of her experience. And we join Mouth, the character Mouth, at a time where she's experiencing some sort of massive brain event, something that's changed for her very suddenly, biscuit, and traditionally it's performed by female performers who are sort of strapped up eight foot in the air so that lights can be shone, biscuit, on their lips so that just the mouth is visible. So we needed to find a way to perform this text in a way that worked for my body. Biscuit, Hedgehog.

SIMON - And what have you done? Because one of the things is you involuntarily move, that's part of the deal.

JESS - Biscuit, yes, biscuit.

SIMON - So how have they…?

JESS - Being held still was not going to work for me, biscuit, I think strap me still and I wouldn't be able to do anything but wiggle. Biscuit. The Beckett estate control the right to perform Samuel Beckett's work and they make sure that people follow the stage directions that Samuel Beckett wrote. So there are, biscuit, two main stage directions for 'Not I' and that is that the mouth is lit close up and that the mouth is eight foot in the air. Biscuit.

And so to achieve this for me, rather than holding me still I have an amazing hoody with the light in my costume so that the light moves with me so that I'm not held still, the light moves with me, because nothing says that Mouth has to be still. Biscuit. And in terms of the eight foot in the air, biscuit, stage direction that posed a little bit of a challenge for us, I have Tourettes syndrome which means that I have relatively poor impulse control and there's an element for me of doing the worst thing in any given situation. If I'm eight foot in the air and have the option of not being the chances are I'll throw myself down, and it would be a very short play, an even shorter play. Biscuit. So we…

SIMON - You use a chair as well, so are you just free standing in the air or are you…?

JESS - Biscuit. No, so in my chair they've built this amazing lift which operates like a seesaw that gets me up quickly and quietly and my chair is strapped in so that I don't look like I'm held still, I don't look like I'm strapped in but I am safe. And it lifts me up eight feet and I perform the monologue at speed and urgently, and I really related to that text as someone with Tourettes. It was a reference for me and my creative collaborator, Matthew, who directors 'Not I' for years and we talked about it on and off for several years. And when we were touring 'Backstage in Biscuit Land', our first show, we had lots of amazing venues say things like, "Ah, we're really interested in relaxed performance so we'd love to make our work accessible to disabled people," biscuit, "but we haven't had the right type of show yet." And so we became fascinated by the idea that there's this cultural curation around, biscuit, what work is and isn't made accessible to disabled people, and the idea that there are some pieces that are suitable and some not. So we wanted to take a really intense piece of theatre and make it accessible on every level, to performer and to audience and so every one of our shows is a relaxed performance.

SIMON - For those who don't know, relaxed performance means?

JESS - Biscuit. Relaxed performance means that they take a relaxed approach to sound and movement coming from the audience, biscuit, they offer a warm welcome to people who might find it hard to follow the traditions of theatre etiquette, so people who might make noises, people with a learning disability, people with neurological conditions, people with loud laughs, people with babies. I think relaxed performances work best when they are for everyone and inclusive of everyone and not specific targeted performances but ones that just acknowledge the liveness of theatre. Biscuit. Hedgehog.

SIMON - And you're… I presume it's to say that every show should be, or just some. I mean where does it…?

JESS - Well every show of ours, every show of 'Not I' is a relaxed performance and I'm really interested in broadening out relaxed performances and starting to think about how we can think about relaxed venues and how relaxed performance can be embedded across a whole institution. And I'm working with Battersea Arts Centre on a project looking at that. Biscuit.

SIMON - When you were approached were you excited or how did you feel?

JESS - Well actually, biscuit, it's a play that we'd decided to do, biscuit…

SIMON - Sorry, so you chose this?

JESS - Yeah, so we were approached, it was our idea. 'Not I' was a text that I was introduced to years and years ago, long before Tourettes Hero, long before I could see the creative potential of Tourettes and of talking about my experience as a disabled person. And I was introduced to 'Not I' at a time when I was finding it really hard to adjust to the changes in my body and to my tics, and the play is about someone not recognising their own voice and struggling to adjust to understand the world and how their body and mind is working.

If you read the text… so there's a big difference with 'Not I' between hearing it or watching it being performed and reading it. Because it's performed so fast with such urgency you can never catch it all, you can never catch every word, this is a mouth just splurging out her life and it's very fragmented. Biscuit. When you read the text there is a story there, there is a narrative there, and it is the story of a woman who's practically speechless all her days, so she's largely non-verbal, she experiences these sudden explosions of language that she lets out in unusual places, including in a lavatory, and that certainly rings true to my lived experience of holding up my tics and letting them out in toilets.

SIMON - Were you a bit spooked when you first came across this and thought hold up, he's playing with Tourettes here or he knows something?

JESS - Biscuit. I'm not saying this is a play about Tourettes, biscuit, but it is a play about a neuro diverse person, it is a play about someone whose brain works differently, biscuit, and therefore as a neuro diverse performer I feel like it's partly my story to tell. It did make me laugh out loud when I read the bit about the toilet, there's a line that says 'incapable of deceit' and as someone with Tourettes I'm very bad at keeping secrets, biscuit, playing eye spy or, biscuit, or I'll tell you instantly what you've got for Christmas. Hedgehog. A marmite sandwich and a bucket of rum. Biscuit. I haven't got you that. Biscuit, and so I think, biscuit, those elements just made me question like how a, from my understanding, a non disabled dead man had known so much about my lived experience. And it was just really resonant with me and I wanted to explore that and I felt I would struggle to go and see this in lots of other productions and I wanted to create a production that enabled people to connect with it.

It's also a play that's often understood to be about isolation and I sort of challenge that idea, there's a whole segment where Mouth, the character, describes her experience of going shopping and just handing in a list and handing in her shopping bag and waiting for her shopping back and not saying as much as goodbye, just paying and going. And people often point to that and say, "Look, she shops, she doesn't even speak to anyone, how isolated she is," and it's like I see that and I look at someone being supported to live, somebody is doing Mouth's shopping for her, her community is providing support and, biscuit, now at this moment in time in terms of what's happening to disabled people politically and socially in terms of how loads of people are being cut out of society by decisions and lack of support I really want people to know that Mouth as a character is only as isolated as a community makes her. And us as a community of disabled people are only as isolated as we are made. Salad.

SIMON - So let's move a little bit away from the play to real life Jess. We've been reading your blog and one post that sort of struck us about your relationship with your support staff, your PA and so on, lots of disabled people get why it's not always about medical or personal care needs but others won't necessarily. So can you describe the dynamics about the people in your house who assist you?

JESS - Biscuit. Yes. Biscuit. The act of receiving care and receiving support is really intimate and it's really personal and for me it's really important that that reflects the person that I am so that it happens with humour and that I'm in control of it. I think when my tics first started intensifying and my support requirements increased I think I was really reluctant to ask for help, I saw that as losing something, as losing my independence. Actually I read an amazing piece on Ouch by Laurence Clark about the idea that independence wasn't about doing everything for yourself and for me it didn't have to mean that I made my own cup of tea because that gets messy, or cut my own carrots because that gets even messier and more dangerous, biscuit, but that independence was about being in control of decisions. Biscuit, and for me, receiving support, receiving the right support and being in control of that is what makes me independent. I am not disabled by my tics or by my body or by my impairment, but I would be disabled by lack of support and I suppose at a time where loads of that feels really fragile as a disabled person I often feel precarious and I think I can see that echoed in lots of other people's experience and we shouldn't feel precarious, we have a right to independent and active lives. Biscuit.

And also I think there's so many narratives that are around disability that are negative and this perception that you're somehow failing if you need support, you're somehow failing if you require help or assistance or asking for something from someone else and it's like I don't see it, like it shouldn't be that way at all, like the relationship with other people and supporting each other, I would certainly give support willingly and people give support willingly but that is also as a disabled person, that needs to be understood as part of our life and not a failing, but it's hard when the narratives that surround us understand it in a particular way and see it only as a tragedy and as things getting worse or a failing on your part.

And I felt very similarly when I started to use a chair and it was like lots of the narratives around using a chair and that being a step backwards or worrying about what other people would think. Loads of the things that were barriers for me were not about actually the difference it would make in my life but about how other people would perceive that. And actually the reality in using a wheelchair, getting the right support, has made me much more independent than I was before and mean that I can achieve things that I would never be able to do without that support.

SIMON - And without that I presume your life would be smaller and it would shrink.

JESS - Yeah, I wouldn't be here. I wouldn't be here, I wouldn't be safe, I wouldn't be performing, I wouldn't be employed, I wouldn't be able to express myself creatively, politically, socially, biscuit, and it's hard though because it's hard not to take on board the language and those narratives that we're surrounded by, you know, biscuit, even when I've had sort of packages of support reviewed and heard the sort of support I've described as a big package of support and it is, I do need lots of support because I'm at risk a lot of the time from how my body and mind works. And to keep me safe and to keep me independent does take resources, but I also give a lot back, and I think it's easy to take on the language of consumption of resources and we need to remember what we give as a disability culture and the richness or our world and our rights as individuals. Biscuit.

SIMON - Sell out in Edinburgh, what happens next? Are you taking 'Not I' on tour? What's next for Jess?

JESS - Biscuit. So we are, biscuit, doing a three week run of 'Not I' at Battersea Arts Centre, we have integrated British Sign Language interpretation, we have embedded audio description, biscuit, wherever possible and will continue to work on that, and all our shows are relaxed performances, everybody is welcome. Biscuit. We are also working with the Barbican Centre on an event called 'Brewing in the Basement' which will be a celebration of disability culture, we'll have children and families during the day and a cabaret style event in the evening. It'll be on the Guy Fawkes weekend and it's all about mixing things up. Biscuit, cats, hedgehog, biscuit, cats.

SIMON - Thank you so much, it's always a joy, there's never enough time, but thank you so much Jess, good luck with everything.

JESS - Thank you, thank you Simon. Biscuit, hedgehog, cats.

KATE - That's almost it for the August Ouch talk show, we've loved recording it here at the Edinburgh Fringe, hopefully you've picked up a little bit of the festival atmosphere along the way too.

SIMON - Thanks go to our guests, Rosie Jones, Jess Thom and Rachel Bagshaw. The studio manager was Mike Smith, the producer Emma Tracey, and I've been Simon Minty.

KATE - And I'm Kate Monaghan. Get in touch with us with your feedback and ideas for future podcasts. We're on email [e-mail]. Find us on Facebook or follow us on Twitter @bbcouch.

SIMON - Speaking rather than playing us out this month is performance poet Neil Hilborn. Hi there Neil.

NEIL - Hi.

SIMON - Your poem, titled 'OCD' has over 62 million YouTube hits. You've written an Amazon best seller and you travel the world performing work about obsessive compulsive disorder, bipolar and other non disability related topics.

KATE - Can we hear one of your poems now?

NEIL - Sure, absolutely. So I just finished writing my new book, it's going to be called 'The Future' and it's going to be out some time in the future, ha ha. And this is the first poem that I wrote that goes in the book. I was riding my bike through Minneapolis and I had to stop on this bridge that crosses the Mississippi river and the writer's part of my brain was like you have to write it. So this is, yeah this is a poem I love, it's called 'Lake'.

There's a fire somewhere down river, just a thin arm of grey reaching out from the river flats. I'd call it a smoke signal if I were the kind of white person who said that dumb kind of stuff. The Lake Street bridge always gives me vertigo. The water probably is not far away. You can sort of see the expressions of the people on the boats below you. If you dropped a rock onto the sand it wouldn't make too deep a hole I guess. I've got to go home now but I'm sitting outside my old home so when does home emerge from just the place where I put all my stuff? The new house is where I do all my living so I guess the old house is where I'm dead. I've been saying all that so I didn't have to say this. It's too easy to jump off a bridge or take some pills. No, actually you've got to walk to the bridge so no one tows your mom's car. You've got to buy or steal the pills. Mostly it's too easy to go without saying goodbye. Yes, there's a place where someone loves you both before and after they learn what you are. That place is called the world and if you want to live it's really the only option. You could choose not to but then where would you get really great sandwiches or listen to Springsteen with the windows down? When you want to cry you'll have to just not. Yes, people will miss you but if you've wanted to kill yourself for a while you've heard that too much and it no longer means anything. Goodbye isn't a strong enough word but never speak to me again please isn't always what I mean. Listen, if I joke about wanting to kill myself that means I don't want to do it. Start worrying when I only talk about brunch and dog breeds. Start worrying whenever you want really, I'm not your boss. I don't know why I asked my phone how to get home from here but I guess it's nice when someone else agrees with me. The GPS says it'll take three minutes. Home is where I most comfortably have my panic attacks. When I get home I get to stay there. I get to sleep then I get to, if I want to, do this all again.

SIMON - Thank you so much.

NEIL - Thanks, yeah of course, I really appreciate that.

KATE - Thank you Neil.

SIMON - I loved it.

KATE - And with that we end our show. We'll see you next month.