Transcript: 'I realised not everyone has to be a Paralympian'

This is a full transcript of I realised not everyone has to be a Paralympian recorded live at Cambribdge Junction and broadcast on 2 May 2019. Presented by Kate Monaghan and Simon Minty

[Cheering]

SIMON - Hello, and welcome to Ouch. In case you've never heard of us we're an unusually conceived talk show from the BBC, which is both serious and humorous, a bit cynical and a bit joyous. It's all about disabled people, and we, the hosts, are disabled too. Isn't that nice?

KATE - It's lovely isn't it?

SIMON - I am Simon Minty.

KATE - And I'm Kate Monaghan. Now usually we are actually tucked away in a studio in London aren't we?

SIMON - This is very, very different.

KATE - But today we're in Cambridge in front of a live audience. Hello.

AUDIENCE - Hi.

KATE - Hi, hi. Thank you all for getting out of bed. That's very kind of you to come and join us here.

SIMON - We are here as part of a new festival of disability arts called I'm Here, Where Are You?

KATE - I'm here. Why? Why are you asking? I'm here.

SIMON - You've made it very awkward in the first three minutes.

KATE - Sorry. So why is it called that?

SIMON - I think it was about as in people coming to disability events but not enough people were coming to it. So there was a kind of well, we're here but where are you? I think disability arts can be quite a hard sell sometimes which is why we're very happy that you are a small but intimate audience and you've turned up for us. So that's it, so where are you?

KATE - And this is the beginning of a new arts festival isn't it, which is quite exciting. Now, our guests today are both on the bill here. Please give a warm welcome to Jackie Hagan and Conor A.

[applause]

SIMON - Conor, the A hides a longer, more complicated name. Do we come back to that?

CONOR - Yeah.

KATE - Are we allowed to know what it is?

CONOR - Aylward. It's just most people can't ever spell it or pronounce it properly.

SIMON - So it's a shortcut.

CONOR- Yeah.

SIMON - Now, you're an interesting chap, and we're going to hear a bit later from you kind of how you've worked in your disability into part of your show, and we're going to have some great ideas, so stay tuned, but I want to be cheeky and sexist and probably alienate the audience, but the thing that you've got is predominantly a woman's disability isn't it?

CONOR - You don't need to say it so quietly. [laughter] Yeah, I think it's only something like 10% of the people who have fibromyalgia are men, and it's predominantly a condition that affects women.

SIMON - So is that quite hard? Did you have to kind of convince people?

CONOR- No, I think I actually had it easier because I was a man.

SIMON - Did doctors get excited, because they go, "Oh look, you're a man with it"?

CONOR - No, I kind of wanted to be a medical unicorn, but seemingly I'm not.

KATE - I'm sorry about that.

CONOR - Yeah, I think my dealings with doctors and specialists was easier just because I was a man and I think I was taken more seriously and my process to getting a diagnosis was phenomenally shorter than most people that I know. I think I was three to six months. I know people who have the condition for maybe three or four years before they get an actual diagnosis. So yeah, I think that process, just on a patriarchal society, was made easier because I was a man.

KATE - Interesting.

SIMON - So the answer stayed sexist but for the wrong reasons, and that's just… Yeah, okay.

KATE - Well let's come back to you in a bit, but first of all we're going to chat to Jackie Hagan. Now, for those of you who aren't lucky enough to be with us in Cambridge and listening on the podcast, Jackie, you have got bright orange hair?

JACKIE - Yeah. This is an awkward thing. Go on, what are you going to say next?

KATE - It really is isn't it? God, I don't know where to go with this!

JACKIE - I just feel I had to make it slightly more awkward. No, go on. I'm perfectly happy. Describe away.

KATE - Okay, so right. Bright orange hair and you've got one leg amputated and you have got quite a lot of colourful tattoos?

JACKIE - Ah, I thought you were going for the fact that I haven't really got dressed properly today. [laughter] Because I haven't, because I thought it's radio. And then I'm like, oh there's an audience and it's being filmed. So I thought we were all just going to ignore the fact that I'm basically in my pyjamas. But yeah, yeah, yeah, there's a lot of other stuff going on, yeah.

KATE - I like this style. So you've got like a slouchy cardigan, a t-shirt…

JACKIE - Oh, we don't need to…

KATE - No, we don't want to go there. Okay right, we're not going that far. Fine, fine, fine. But you've been on our programme before.

JACKIE - Yeah.

KATE - And I remember you best because for a while what you did quite a lot was decorate your stump to look like famous people.

JACKIE - [sings] Celebrity stumps, celebrity stumps. Yeah, that.

KATE - And I was quite disappointed that there's no celebrity stump on display today. I'm just going to say that.

JACKIE - Well, you don't know what's going on underneath the leg do you?

SIMON- You showed me some this morning. I saw Bowie, Ziggy Stardust with the sort of slash.

JACKIE - Yeah, yeah.

SIMON - What was the other one? Oh…

JACKIE - I've done Trump stump, that's the obvious one isn't it?

SIMON- Kate said you'd done Hitler as well.

JACKIE - I haven't done Hitler. Who said I'd done Hitler?

SIMON - See. I raised my eyebrows to that one.

JACKIE - It was the first one I thought of, just because… This is going somewhere weird isn't it? Just because I was thinking of people who have got distinguishing features on their face. Hitler. But I held back and did the man from the Go Compare advert instead. That was the alternative.

SIMON - I'm so going to follow you on Instagram. I'm sorry, I am late to the party on this one. When you're new to disability I know people kind of like, bling their wheelchairs or their mobility scooters, and you're still doing it, but is this part of your art or is this part of a statement?

JACKIE- Well I don't know what's art and what's me anymore, it's all just life isn't it? So yeah, it's all the same thing. I am art. [laughter]

SIMON - This should be a Sunday morning Radio 4 thing.

KATE - On your website you describe yourself as bedsit, avant-garde and good with folk.

JACKIE - Bedsit, avant… Hang on, soz. I'm just pouring some water. Just for the radio. [water pouring] There you are, in case anyone's into ASMR. Oh, a lot of ASMR people in the audience. We'll talk later. Yeah, and good with folk, like I'm good with not mainstream people. That's how I'm going to put it. I was brought up in, like Mum had bipolar so I was in psych wards a lot and stuff like that, and council estates are just full of interesting characters, so I'm good with weird folk. I like being kind of professionally un-slick, you know, I quite like that undressed kind of me today.

SIMON - If you're already slightly, you said, dealing with odd folk, and then the disability, sometimes we become outsiders or we're on the periphery. So this is a very natural place for you to be.

JACKIE - Well, sort of. It wasn't to being with like, because it was a shock. It wasn't a plan. It wasn't like oh, I'm going to have my leg off, it was like all of a sudden there was a hospital and it was happening and like, what's going on? So it took a while to get my head round it. I suppose the bit we didn't say is that my leg is all glittery and… not glittery in the way that you'd expect, in a bedsit way, it's like I've rolled it in PVA glue and then rolled it in avant-garde bedsit. It's true isn't it?

KATE - You're talking about your prosthetic?

JACKIE - Prosthetic, yeah. Not the other leg.

SIMON - This is kind of part of your pushing back?

SIMON - [pauses] Sorry, I thought that sentence was going to go on longer than it was then. You know, I don't feel like I'm doing this big like ah, rebellion. It's not like being shocking for the sake of being shocking, it's normalising something in an authentic Jackie way.

SIMON - And absolutely authentic. There's a bit of, if you're going to look I'm going to give you a proper reason to look, or is that me misjudging?

JACKIE - No, it's not even as far as that, it's just like ha, ha. It's just like that. It's just like I'm being a bit naughty and I'm amusing myself.

KATE - You talk about becoming disabled was a bit of a shock. How did that happen for you?

JACKIE - Oh, you mean like literally what happened?

KATE - Yeah.

JACKIE - Yeah. How did you have your leg off? Yeah.

KATE - Yeah, why not?

JACKIE - I haven't told the story in so long. It's like taxi drivers and stuff, I just lie to them now. I just like tell them anything, you know, because you get sick of telling the story. I just say war sometimes. [laughter] It's just one syllable, it shuts people up doesn't it? But no, I had a big cluster of blood clots in my ankle, so my foot went bright white and it was killing. I went into A&E like about five times until they took it seriously and then once you get like pushed to the front of the queue you realise, oh God, something's actually wrong here. And then I was in hospital for… Every time I tell this story I add a month don't I?

CONOR- Yes, three or four.

JACKIE - Yeah, it was like three or four months really, it wasn't like the nine that I sometimes say. And yeah, all sorts went down.

KATE - And how old were you?

JACKIE - Oh, right. It was five years ago.

KATE - So it is quite a recent thing that you're…

JACKIE - Yes, so it had just happened. When I was last on this it had just happened. Like it had just happened that minute and I was touring a show about it because you think you've got to be wonder woman don't you? You think like oh yeah, this hasn't affected me. Argh! And I've just calmed down at Christmas from that. I've just stopped doing it and gone, I could sit down and do nothing for a minute. It's taken me that long to realise that because you have got to try harder.

KATE - When you first become disabled you feel like you've got to be this super hero because that's the narrative I guess a lot of us…

JACKIE - You've got to be a Paralympian and if you can't be a Paralympian you've got to be some other superstar. You're not allowed to just be like a person. So I've realised now that I can just be a person.

SIMON - Is that some empathy with the audience? Is there in any disabled people you've got to overcompensate?

MALE - Overcompensate through…

KATE - Hold on, wait for our microphone.

SIMON - We're going to get a microphone to you.

KATE - That's just a tic. Okay, that wasn't a real question, just a tic.

SIMON - There's a microphone for the person in the front here.

CATHERINE - I think you've either got to be like a superhero or the complete opposite. It's like people to expect you to either sit around doing nothing and moaning all the time, or be a Paralympian and there's nothing in between.

KATE - And what's your name, sorry?

CATHERINE - I'm Catherine.

KATE - I think that's absolutely true. Conor, how did you find it?

CONOR - I think I hid away for about two years in my flat and didn't really do anything.

KATE - So you are doing as Catherine said, you went to the other extreme.

CONOR - Yeah, slowly as all the little bits of my life that I had built up before I got ill, they slowly disappeared over about the course of a year, and yeah, I think I hid away for quite a while. And then I did go out, trying to gig again and tried to work like I used to work, and that just quickly became unmanageable.

JACKIE - Being a performer… Me and Conor know each other very well by the way, in case it sounds like I keep interrupting or something like that - I'm allowed - being a performer and becoming disabled, because we both were performers and then became disabled, it's so wrapped up in your identity. So it's, yeah, all of a sudden you're not doing that and that's hard. So I went to like the other extreme and sorted it to unnecessarily too much, you know.

SIMON - You're at the festival with your show, and I love your title, This is Not a Safe Space.

JACKIE - Yeah. If we all make a noise for what you think about 'Benefits Street'.

AUDIENCE - [Boos]

SIMON - So this was a Channel Four documentary.

JACKIE - Well just like the idea of 'Benefits Street' of this villainising working class people and obviously that happens with disabled people. My God, we're always villains in films. That thing that you're just like crying into your own face about being disabled, like this idea. So I wanted to present people on disability benefits. [pauses] Pardon me, sorry. Travelodge breakfast. [laughter]

SIMON - You're bringing the listener in with that little burp.

JACKIE - I really was, wasn't I? That's professionally un-slick. That's what I mean by bedsit. It's nice isn't it? It like humanises us.

SIMON - It is, yes.

JACKIE - Yeah, so I wanted to make, yeah, us into like actual real people instead of 2D victims or villains.

SIMON - When we first met you I thought you were very chilled out about disability, but now I'm feeling there's some politicisation. There's a kind of a…

JACKIE - Yeah, I got a cob on. Well, I wasn't chilled out, I was freaking out, because it had just happened. So you know the flippancy defence, right, in life?

SIMON - Yeah, okay.

KATE - Yeah.

JACKIE - Like, you know, "Oh I'm not bothered, I don't want to go on holiday, what do you want to go on holiday for?" I was doing the flippancy defence. I was protecting myself with all my heart by going, "Yeah, all right, I'm cool, me."

SIMON - So we would say oh she's so tough on the outside but she's quite soft on the inside. Is that what I'm saying?

JACKIE - All right, all right. [laughter]

SIMON - I'm going to be a soft southerner. What's a cob on?

JACKIE - A cob on is scouse for being angry. Scousers have got like 300 words for being angry. [laughter]

KATE - So you went out and interviewed…

JACKIE - Eighty people.

KATE - About what?

JACKIE - Oh, I didn't go to interview people about being disabled or about being on benefits, I just went to have a gab in people's houses. Have a cup of tea and a gab and see what came up.

KATE - For the show?

JACKIE - For the show.

KATE - And what did come up?

JACKIE - It wasn't what I expected. I thought I was going to make a show about how we've got amazing senses of humour that get us through, but it was actually really grim what people talk about, because people don't get asked stuff, people don't get to talk, you know? So it was hard, it was really hard, like talking to people. I mean, the show is funny but it's angry funny, you know.

KATE - And what kind of people did you talk to? Were they all kind of working class people? And do you think working class does play into the disability?

JACKIE - Yeah, of course. You're stressed aren't you? You're stressed about money; you get sick, you die. Soz to bring everyone down there, but it's part of it isn't it? Yeah, defo. I mean it wasn't like just working class people, it was people on benefits, which is, you know, everything's changed hasn't it? And people's class identity is a funny thing, and like working class, middle class are stupid words, it's like male, female isn't it? It's too binary. And also I do know that like middle class people have problems too, just in case anyone doesn't want to listen to what I'm saying because they think I don't know that. I know, mainly because I've slept with most of them, but… [laughter]

SIMON - I want you to burp again as well. I did meet a couple of Americans a month ago and they said to me, "The problem with disability arts in the UK, it's all about educating people about disability." I don't sense…

JACKIE - Do you think it is?

SIMON - Conor, you're…?

CONOR- Well, I think there is sort of the anti-stigma show, which seems to be quite prevalent, and it has a place, but I think for me, when I was sitting down to work again as a writer and a performer I didn't want to do an anti-stigma show because I think there are people out there who are doing them have much more knowledge than I do. So I think for me, when I started talking about fibromyalgia on stage it was because in the rehearsal process I found out I wrote like an able bodied person and I thought the show out like an able bodied person, and then about 30 minutes in it's like, "Oh, you can't stand or think properly." And I had to figure out ways of making the show manageable for me as a performer and then trying to make sure that any of my disability in terms of the affects that are seen on stage become part of the narrative, rather than something that's apologised for or something that's…

SIMON - So this isn't awareness, and this is what the Americans were saying, "This is what we do, this is who we are, this is our culture, you either get it or you like it or you don't. We're not about trying to bring you in."

JACKIE - Conor sat at home and thought about it, whereas I legged it out of the house and went mad, and literally went mad. What I'm trying to say is that Conor's doing something more radical than what I'm doing, and it doesn't seem it because I'm being angry on stage, but it's building in actual access, Conor's actual access needs into the show. It's like I pretend that I don't need the things that I need to try and succeed, which is stupid, and understandable.

KATE - Well, we're going to come on to that when we chat to Conor a bit more, but I'm just wondering, Jackie, there's one part of your show where you have a fantasy PIP form.

JACKIE - Oh, yeah. I haven't brought it.

CONOR - Can you remember it?

JACKIE - Is that a problem?

KATE - Well, just tell us about it.

SIMON - You can tell us.

KATE - PIP is our Personal Independence Payment. So it's a benefit that disabled people get and… well, all of us who need it are being moved over from DLA to PIP. So I'm just wondering, in the audience how many of you guys who got DLA have now actually been moved over to PIP? One. Two.

SIMON - Who's waiting to be assessed?

KATE - Anyone waiting?

FEMALE- Well, I became physically disabled six years ago, but it took a year and a half and I was literally down to the last pound of my overdraft. Fortunately I have a benefits adviser who has literally saved my life, repeatedly, for many years. But yeah, it's a nightmare, but I wasn't on DLA before. But yeah, because they're talking now about five weeks to wait equally ludicrous Universal Credit.

KATE - I mean, just from that one response I think we can see what an emotional and emotive situation that the whole benefits thing is. So I guess that's why you're trying to take it on and say… Because I know, like Simon and I were talking earlier and neither of us have been moved from DLA to PIP and literally every time a brown envelope comes through my door…

CONOR - Oh God, yes.

KATE - It's that heart thing. And my wife will come and say, "Oh, I'm really sorry, a brown envelope's come through," because she knows the anxiety it provokes, because it's awful.

SIMON - And the awkward bit, I keep sending brown envelopes to Kate and not realising the issue, but… I have a theory, I kind of have a theory that, because we do Ouch that we're going to be the last two. Because we will talk about it, so they're kind of oh, let's wait till right till right at the end. Just one last bit. Where did you find your benefits adviser?

FEMALE - At the housing society where I live. I mean I've had very unfair and horrible circumstances for a long time, also to do with the ongoing abuse of my autistic son [with emotion] and how I've been abused and shunned for 15 years because of that.

JACKIE - I'm sorry.

FEMALE- But yeah, she's money matters adviser for my housing society and I literally wouldn't be alive if it wasn't for her.

SIMON - Are you okay?

FEMALE- Yeah, yeah.

SIMON - As much as you can be.

FEMALE - I can't talk without crying. I haven't been able to for a long time.

SIMON - Okay.

KATE - We understand. So Jackie, I think this just shows how important tackling a subject like PIP is and maybe in an amusing way is the way that we get through to people. So what's on your fantasy PIP form?

JACKIE - I've gone now. Soz. Ask Conor a question, because that's made me cry.

CONOR- Go on.

KATE - Let's all take a minute, let's just take a minute. We'll just take a minute.

JACKIE - It's all right. Don't cut this, this is professionally un-slick, crying about PIP. This is the thing, the thing I'm crying about is the fact, is how anxious my mum gets when the brown letter goes through the door. That's the bit.

KATE - Now, just before we head over to Conor, I just want to say that you can keep in touch with what Jackie's up to by looking at her website, jackiehagen.org. And obviously you're going to stay with us while we chat to Conor?

SIMON - How often do Instagram photos go up of your stump?

JACKIE - When I feel like it.

SIMON- Okay. [laughter] Only asking.

CONOR - Wednesday at four o'clock in the morning.

JACKIE - Yeah, yeah.

SIMON - Conor, you're here at the festival with your show, Learning to Swim on an Ironing Board.

CONOR- Yeah.

SIMON - We've already established you've got fibromyalgia, and in a sentence what is that again?

CONOR - Fibromyalgia?

SIMON - Yes.

CONOR- Chronic pain and chronic fatigue, and that's the two basic symptoms. And then there's about 60 other ones.

SIMON - Okay. So when I read the title of your show, I'm thinking The Monkeys or something. Was there a TV show where they had people on an ironing board?

CONOR- No, that's how I learnt different strokes when we were kids. Dad would put the ironing board up at the back of the living room and then you get plopped on it and taught to do breaststroke and the crawl.

KATE - What!

JACKIE - I thought that's was all made up.

CONOR- No. I checked it online because I…

KATE - That's not a thing.

JACKIE - That's a thing.

CONOR- It's not… Well, I watched 'Josh' one night, the TV programme and there was an ironing board swimming lesson in that, and I got a little bit mmm-mmm because I'd put that tweet up for a couple of years. And then I thought let's google it, because other people must have done this. No, it's just me and Josh, that's it.

SIMON - Is it like waterboarding? [laughter]

CONOR- My dad was weird, but not that weird.

SIMON - Your show is about how to work out how your body works and how to respect that, and Jackie's saying you're quite radical about that. So we like the sound of that. Tell us a bit more.

CONOR- Yeah, I think for about seven years I tried to stay in the performing industry and I just bashed…

KATE - After your diagnosis was that?

CONOR - Yeah. Like I've been a performer and writer for about 20 years and for about 14 of those years I've had fibromyalgia. And then I had seven years where I did try to go out and gig, but every time I'd to it I'd just break my body to bits. And a couple of weeks of gigging is a couple of months of pain. And I got to the end of that, I did a gig in Liverpool, ten minutes at the Comedy Club, got the Friday night midnight Liverpool to Manchester train, and I was sort of sat there curled up in pain while two men had a fight over a piece of chicken.

And then that kind of broke me and I made the decision to stop being a performer, stop being a writer, and I had to start from the bottom up again and I basically kind of learnt… I think for about two years my mantra was be gentle, and I kind of took things very slowly and once I'd established a kind of nice base for my life then it was kind of push gently was the next bit and slowly I started letting creative stuff back in my life. But it was really about a four or five year process of learning how to write and be creative without it becoming something that ends up damaging me.

It was really just a process of knowing myself and my limits and then also about being able to communicate those things, because that I think was the biggest problem at the beginning, was how do you tell somebody about pain because they already know what it is? And the real challenge is to try and talk about the lived experience of chronic pain and that's the place that's probably the hardest for able bodied communities to understand.

SIMON - It's the one… and when I do my other job advising companies and so on and then someone says they've got this, and I get a bit stumped myself. I don't know what the solution is, because by working it makes it more difficult, but by not working then you're causing another problem. That's a really tough space.

CONOR- For me it's been a kind of a negotiation where I know by doing this gig the chances are the next four to five days are going to be very limited in terms of energy and pain.

KATE - Absolutely, yeah. Well I've got EDS which is very similar to fibro. I feel like it's kind of the similar kind of thing, which is Ehlers Danlos Syndrome.

SIMON - But you're very subtle. If I didn't know you and if you didn't bang on about it off show I would never know. No, that is my point, you never really mention it.

KATE - No, because I feel very awkward about it I think. I think people get bored of it and also [inaudible comment from audience member] you get the result… We've got a gentleman with Tourettes in the audience which I'm enjoying his tics. And I think that I worry, like you said, people get very awkward about it because they think how can you live in pain all the time? And the answer is you just do because you don't have a choice.

CONOR - Yeah.

KATE - But what you've done is you've sort of built accessibility… Well, I mean I've built my world around my disability and the things I can do, the things I can't do, and I've learnt over 20 odd years of living with it what I can and can't do and then I just try and stick to that as much as possible. But how have you built that into your show?

CONOR - I think for me, like I said, I'd written and created it with an able bodied kind of headspace and then I genuinely, if people were at the show yesterday I have a person called Hannah, well she's a character now in the show, who works as my kind of on stage prompt.

KATE - And why is that?

CONOR - Because I will just forget things. Like I literally have the script on stage and then the prompt's there because I'll hit these walls mid show and so it's like, "Hannah".

KATE - And that's part of your condition?

CONOR - Yeah, I think it's called fibro fog, it's an awful, awful name, and basically it's just cognitive issues. The symptoms with fibromyalgia have really non medical names like morning stiffness which is…

SIMON - Oh, hello? [inaudible comment from audience member]

CONOR- Yeah. I'm over 40, I don't…

SIMON - A lot of empathy.

CONOR- And I think that was… Where was I?

JACKIE - You do the show in the house as well. That's an access thing.

CONOR- Yeah, I think initially when I wrote that show I did go… I removed all the industry pressures of deadline and finances and went, okay I'll make a show from my living room, and that's it. And if I can hit that target… I think it took about three years from the beginning of the writing process to the first show in my living room.

KATE - Did you actually do it in your living room?

JACKIE - Yeah, yeah.

CONOR - I did six shows in my living room. I visited my ex lodger set up and I went to her house and performed there.

KATE - I mean, is it a huge living room?

CONOR - No, it's tiny. It's not massive. I think there was 19 at one show and that made me really uncomfortable because…

SIMON - It's a lot.

CONOR - I don't generally have lots of people in my home, and it was like I was sitting there going, oh this feels weird and wrong. Okay, do the show, and it was a lovely… It was one of those boisterous shows that was gorgeous.

JACKIE - And like legitimising spaces like that is really important isn't it? Because like legitimising places, community centres and stuff like that, people look down on stuff like that and so… That's all I have to say. Carry on. That's important to me, yeah.

KATE - I'm just wondering if I could do this show from my living room. I'm just going to look over at my producer and say maybe that's my access need. No. He's shaking his head. No.

SIMON - There's a shaking of the head. Although the other producer said yes, so… Conor, you've built in sort of rest points.

CONOR - Yeah, the original drafts of the show didn't really have the therapy storyline for probably about a year, and then Terry the therapist sort of came along.

SIMON - You've got Terry the therapist.

CONOR- Yes, Terry the therapist. He's over there in the bottom of that bag.

KATE - So what's the therapy?

JACKIE - I do need to give some context to the story. [laughter]

KATE - Yes, I have no idea where this is going.

JACKIE - I love you, but no one knows what you're on about.

CONOR - Yeah, part of the show talks about kind of the therapeutic process which I've kind of been involved in over the last 20 years, and I just sort of allowed Terry the therapist to talk.

SIMON - Okay, I'm going to probably make myself look really daft. Is that a sort of fictional character that you have on your shoulder to allow you do something, or is this a bit more?

CONOR - He's a stuffed owl and he sits on the end of my couch during the show and kind of chats to me a little but not much.

JACKIE - The way you're saying that like it's obvious. Like how do you not know that? [laughter]

SIMON - At the BBC we have Jamie and Lion and there's Tilley and Del, I do know this, that people with autism that they have their character that…

CONOR- Oh yeah. No, it was just a character that came along and he…

KATE - And do you see a therapist? Is that based on a therapist that you've seen?

CONOR - I have, yeah. Not now but I have, over the course of my adult life I've been in therapy and counselling a number of times. And I think having Terry as a character in the show, he was allowed to have a voice and be honest in ways I didn't want to be myself on stage. He was able to talk about how the condition affects me and how my life was altered by it.

KATE - God, that's really interesting because…

JACKIE - And it being a stuffed toy saying it, for some reason everyone adores it and you're allowed to talk about stuff, yeah.

KATE - Maybe this is what I need to do, because saying it myself is so difficult. Trying to explain how your disability impacts every waking moment of your life, just saying it is so, so difficult. But I imagine if there's something else that could say it for me, that I would be so much more comfortable with that. And I don't know why that is but now you've said that I just think that yes.

CONOR - I think once you're given that area of voice if you're doing it on a personal one to one there's emotional attachment, and if you've got like a Terry or another character who can take that voice on I've found it a lot easier.

KATE - And I don't know if there's something in the invisible disability here that perhaps it's a bit easier for people to understand what it's like in part for you, Simon, because you're short, or perhaps for you, Jackie, with your…

JACKIE - I've got loads of invisible disabilities, yeah, yeah. But people love the leg because it makes sense to them.

KATE - But I guess for you and I, Conor, there's no visible, we can get away with being able bodied. I can pretend if I need to that there's nothing wrong, but in reality inside your head it's a completely different place.

CONOR - Yeah, I think there's that…

JACKIE - You get taken for like, people think you're on drugs and stuff and that in shops don't they?

CONOR- Yeah, if I go into town and I haven't shaved properly I get followed round by security because I just have this sort of little bit broken look. Like I remember a horrible walking in Manchester from, I think it was about 500 meters took me about ten minutes, and not one person reached out. And I was using a walking stick at the time. It can be really hard.

JACKIE - Whereas people love offering to help me. I mean I don't mind. It depends how they do it but it's like glittery leg, made up, let's help her but…

SIMON - The visible and non visible, again that's a non… It will be forever and we know the skin debate. I met a chap this week who uses crutches and he said, "If I just wear my regular clothes people kind of slightly avoid me or they think there's something wrong, duh, duh, duh." And because he's an athlete when he puts on his tracksuit people go, "Oh, you're great. I really like…" And just what he's wearing completely changes it, but he's still got the same impairment, the same sticks.

KATE - Is that the thing because people think he's a Paralympian superhero playing into it?

SIMON - He's doing something, yeah.

KATE - People are like, great, wonderful.

SIMON - Yeah.

KATE - And then without it you're like no, you're the other end, you're the benefit scum.

CONOR - Yeah, I think it's that. One of the lines in the show is you only tend to see us when we're at our best. I saved up a number of days prior to coming here that were low level basic stuff so I would have enough energy for the gig yesterday. And that negotiation of kind of there are four or five days where it's not…

JACKIE - It's hard to know what's an access need though. Like people think I just know what my access needs are.

CONOR- Oh God, yeah.

JACKIE - And all right, yeah. Don't have stairs like them behind us. That was a bit of a… Yeah, cut that bit out, because that sounds a bit like I'm slagging off the place and I didn't mean to. But yeah, I'll just do that again. [laughter]

SIMON - We're not actually on the stairs…

KATE - We're not up the stairs, just to be clear.

JACKIE - Yeah, I was just referring to some stairs, yeah. Yeah, let's do it again. I'll interrupt here again. Yeah, it's hard to know what your access need is. Shall I do it again because you were laughing?

SIMON - I don't mind.

JACKIE - Calm down.

SIMON - It's one of those take overs.

JACKIE - It's hard to know what an access need is, like people think I just know what my access needs are. And yeah, I can't do stairs and stuff like that, but it's like how much pain do you decide is too much pain, isn't it?

KATE - Yeah.

JACKIE - It's like it's not as straightforward as people think.

KATE - Yeah, and sometimes you want to do something that you know is going to cause you that level of pain and because you know it's worth it… And I always find people will say, "No, no, no," and I just think no, that's my decision. I know that the payoff is going to be whatever it is, but that's my decision.

CONOR - Well, I had a weird one. Somebody came up after one of the shows in Manchester and she talked about her efficacy as an audience member watching the show where I am going to cause myself pain. And I was like, that's not your decision, it's mine. As the artist I know when I get on stage I know it's happening and I know it's going to happen after. And I'm okay with people seeing the pain on stage because occasionally… the fibro fog's the main thing that hits during the show.

SIMON - I'm jumping in, Conor. We've got a few minutes left and I would like to get the audience to see if they've got any questions for our artists. Niamh is coming round with a microphone. Any hands up or shakes of the head or just let me know if you have a question.

KATE - If you do have that fibro fog you've got ways around it, so do you…?

CONOR - I've got Hannah.

KATE - Right, you've got Hannah and you also use a video to kind of…

CONOR - The videos are there as kind of rest stops for me a little bit and they're able to bring in different elements, like Terry does a short educational video about a therapeutic technique called Halt.

KATE - Right, so you're thinking I need a break during the show and you say right, a video?

CONOR - Yeah, and I think the thing I've been trying to do is to try and embed all those… Essentially they're safety nets that help me, but they need to function as part of the narrative and part of the story and that's been something where it's been a strange… I didn't have Hannah before. When we did living room shows or we once did a show to the clinicians in a pain clinic at a major hospital. It was so weird, there were four psychologists in the front row. But what I normally… Hand gestures alone suggested a number of maladies. [laughter] But yeah, I'd hand somebody in the audience a script and they would read along and if I lost my place they would kind of help.

And there was a bit of a reflection of that thing of there is always this need to get help and have help on board during a show. I think one of the things that was nice about the living room shows was that bit after where people sat and talked and there were really lovely stories that came out. Like one woman had for 12 years never told her employers or partners that she had fibromyalgia. And I was like how do you…? Because I couldn't hide that for half a week. And then somebody else kind of talked about often when we're asking for help we're asking for help that we continuously need, and it can be a bit I don't want to reach out to these people.

And I wanted there to be a bit of a reflection of that. And we kind of went, okay, you need an onstage prompt, and I bullied my producer into being the prompt and it's become something else and next time we go into rehearsal space we're just going to develop that relationship and embed it inside the show and interweave it rather than a kind of oh it's stopped the show.

SIMON - But that reminds me, I mean there's some great disability art where you have a sign language interpreter that becomes integral to the show.

CONOR- Yeah, I want Ali to come with me everywhere.

SIMON - But that's slightly separate. I mean Birds of Paradise with 'My Left Foot', the interpreter was absolutely significant and there's even lighting moments where you only see the hands and not… And it becomes a vehicle in itself, an artistic thing. It's beautiful.

JACKIE - Yeah.

CONOR- I think for me I think when the disability elements, the access elements become part of the show and are legitimate, that's where my goal is now

SIMON - And that is that bit of we're not apologising, we're not educating, this is part of the culture, this is part of what we do. It's an intrinsic part. It's beautiful when it's like that.

KATE - Yes, but I'm afraid I think we're coming to the end of our time, which has absolutely flown by today. Thank you so much. That's it for our programme here at the I'm Here, Where Are You festival at Cambridge Junction. We're planning a few more live shows later in the year so get in touch if you want us to come to you. You can email us at [e-mail] or on our Facebook or Twitter pages. And that's how anyone can get in touch in fact, and we are just waiting to hear from you.

SIMON - Thank you so much to our audience here. It's been so lovely having people come. We don't do live shows with real live audiences. And thank you for your contributions as well, they're really, really appreciated and it just kind of lifts it, it makes it something different. A proper thank you to Jackie Hagan, to Conor A, to our production team, Niamh Hughes and Damon Rose, plus Chris Banner and Tom Earl, who are from our outside broadcast team.

KATE - And all that's left to say is say thank you and goodbye Cambridge. [applause]