Transcript: Can 'sex robots' help disabled people? - October 2017
This is a full transcript of Can 'sex robots' help disabled people? as presented by Kate Monaghan and Simon Minty and first broadcast on 6 October 2017
KATE - Hello listeners. Well, you join us still trying to sort out the programme actually, because we are a little bit behind. I hope you're all having a lovely October by the way. This month, Growing Up Badly: should disabled people have sex robots? Why not? And sign language superheroes, amongst other things. Simon, can you just say something while I write a few more notes on my script?
SIMON - Hello everyone. Usually we do this in a very slick way, but the one thing you probably don't realise about the show is the access issues that we have to think about for our variously disabled contributors. That's from bringing in big chairs with neck and back support, through to sorting out fire safety for contributors who are talking to us from a very tiny studio booth somewhere else in the country.
KATE - You are often a fire hazard, Simon.
SIMON - I'm not going to respond. Those little studios don't always have ramps, we've even had it's too humid, but no access challenge is too big for us.
KATE - Heck no. We are all over the access, and to tell you a bit about how it's going today we have got Dan, one of the Ouch team. Hello Dan.
DAN - Hello.
KATE - Hello. He's a guy from the office who makes our beautiful videos happen, but recently he's been trying to work out how we can speak to a deaf Italian in Milan who speaks ASL, not BSL. So Dan, what's happening?
DAN - So what's been happening was, still happening, is we are trying to interview an Italian film director who is deaf, who communicates by sign language, either Italian sign language or International Sign, so not BSL which is the sign language that…
SIMON - British Sign Language.
DAN - British Sign Language, thank you, and we've been going all round the houses with how everybody I've told this to has gone, "Mm-mm, so what could possibly go wrong?"
SIMON - And not even in the room, that's the point.
DAN - They're not in the room, he's not in the room, the sign language interpreter is here, or she's in the next room, she'll be joining us shortly. I have in front of me a box of tricks, also known as a laptop.
KATE - But she's not a BSL interpreter like we normally use is she?
DAN - No, she's an International Sign interpreter, who are very scarce, there's only three I believe in the entire country.
KATE - Wow.
SIMON - A few years ago I hosted a panel at a film event in Moscow, and we had an American deaf film maker…
DAN - Oh, you're going to outdo me aren't you?
SIMON - …I was trying to keep everything to time, so she spoke in American Sign Language, which we then had to translate into verbal spoken English, which then had to be translated into spoken Russian, which then had to be - because there were a load of deaf Russians that turned up - so it then had translated into Russian Sign Language. The guy on my right who had a 20 minute slot at the end, I kept saying to him, "You've probably got 15 now." "You're down to ten." "And you've got five minutes." I said, "You're not going to speak," it just… the time disappeared, and the best bit was she would say something in American Sign Language and chuckle, and then about two minutes later the Russians would go, "Ho, yeah we've seen it!" So there was this massive delay as it went through the different…
DAN - And you thought they were laughing at you no doubt, Simon. Yes well, let's see, I mean the scariest thing, so we had either we could bring the film director into an Italian radio studio, complete with sign language interpreter who would translate into Italian, we'd get that down the line and then I would interpret, because amongst my many skills I'm not just a guy from the office, as I was introduced as, I can also speak Italian.
KATE - [coughs] Of course.
SIMON - Fight back Dan.
DAN - So I could have interpreted, but instead we have a sign language interpreter here and I have a laptop in front of me and we're trying - do you want a Skype sound effect? - we're trying to get the skype line up so that we've got a few minutes still to get that working. Anyway, the idea is we will see Emilio Insolera, the film director, and his words will be interpreted by an interpreter who's in the next room.
KATE - Okay, I mean this is beyond me, so good luck with that Dan. Well done, keep trying.
DAN - Yes, thank you.
KATE - Leave us to it, you keep trying your Skype.
DAN - If I come back empty handed I hope you understand.
KATE - Er yeah.
SIMON - Sit back, listen and enjoy us, see, or hear us floundering around as we try and make this work. It is a joy, I love this sort of stuff though. I want to quickly introduce two contributors we've already got across the table from us.
KATE - Yeah, they've made it to the studio, thank goodness, without too much problem.
SIMON - Activist and artist, Penny Pepper, and BBC Three science expert, James Young. Hello guys.
JAMES - Hi.
PENNY - Hello.
SIMON - Hi there Penny, how are you?
PENNY - I'm a writer.
JAMES - And I'm not an expert. [laughter]
SIMON - Great to have you both on the show.
KATE - So we've got writer and artist, Penny Pepper, and BBC Three, non-science expert, James Young.
JAMES - Expert at life. No.
KATE - I told you this show was a bit of a shambles and it just continues to be. So what are you an expert in then James?
JAMES - Oh, I'm kind of a jack of all trades, but I'm currently exploring presenting science and technology on BBC Three.
SIMON - And Penny, what would you say you're an expert in?
PENNY - I'm an expert in not having my work published for a very long time. Until now.
KATE - Ah, we've all got that going for us I think. So we'll talk to you both in-depth later, but do feel free to jump in at any point you see fit and if…
SIMON - You're looking slightly stressed Kate, I can see it in your face.
KATE - [shuffles papers] It's all fine! It's all fine in the studio, it's all fine! And you guys know how to get in touch with us if you want to comment on anything. We're email@example.com. We're on Facebook or @bbcouch on Twitter. Right, James Young, you are here with this month's social media roundup. Now you may have seen James on the BBC documentary, 'Can Robots Love Us?' which dropped in September. Now James, you are a science-y person? I'm not going to say expert again, because obviously that went badly, but it looks like the kind of stories you've picked for us this month are on the science sort of tech side. So let us jump straight into it.
SIMON - Tell us about Uber in London, what's been going on? What's this got to do with disabled people?
JAMES - Well, Uber's recently been informed by TFL that they've lost their licence.
SIMON - Is that Transport for London? Yes.
JAMES - Transport for London, yes. So it's going to expire, and basically it's due to their practices in passenger safety. And we've all heard why, it seems as though people are reporting incidents and the company's not really doing enough quickly enough to respond to allegations of stuff like sexual assault.
SIMON - Passing it on to the authorities was one of the claims, yeah.
JAMES - Right, so maybe they're holding on to things too long and not passing on the information, so they've kind of been reported to not be up to standard.
SIMON - I have a very moral problem in the sense that I know there's some things that I don't agree with with Uber. As a person who can't walk very far and the idea of the door to door service that they've got, I'm so pleased that they're going to have to up their game, but a bit of me when I heard that they're going I was like I've become a little bit reliant on them.
KATE - Addicted.
SIMON - And also they've got wheelchair accessible vehicles in lots of cities. I mean how do you think this… Oh, Penny?
PENNY - I was just going to say that, that they have very reliable wheelchair accessible vehicles.
SIMON - They do.
PENNY - Yes.
SIMON - You've used them then?
PENNY - Once.
SIMON - Okay.
PENNY - But the difference between your other available services is they're very prompt and very reliable.
SIMON - Right.
KATE - Well they've introduced, so they've got Uber Assist and they've got Uber Access, so if you need a bit of help you can click on Uber Assist, if you want a wheelchair accessible vehicle you click on Uber Access. I mean it just makes life so much easier.
PENNY - There's a bigger issue though, there is a bigger issue, like you say Simon, there is this kind of moral sort of imperative here for them to change, but it is a shame.
SIMON - Exactly.
PENNY - And I also think if we look at that at an individual use level, of course it's a shame.
SIMON - Yes, absolutely.
PENNY - But there are bigger issues.
SIMON - You're frowning James, what are you thinking?
JAMES - I'm thinking that it's been really excellent. It brings my mind to a website like Amazon which provides things in such a convenient and easy way, with kind of okay prices, but it may be destroying and taking away from local businesses and stuff like that, and it's completely changing how we shop commercially.
SIMON - Unintended consequences of this perhaps.
KATE - So with Uber obviously you rate your driver and your driver rates you as a passenger.
SIMON - Terrifying.
KATE - Yeah, which does sound a bit 'Black Mirror' doesn't it? I don't know how many people have seen that episode, but it terrifies the life out of me. But I'm a bit obsessed with my Uber rating, and one of my problems is I let other people use my Uber account; I have to pop other people in cabs.
SIMON - Oh!
KATE - And then I'm always like, oh this is going to affect my rating. Do you know what your rating is Simon?
SIMON - I am 4.68.
KATE - Oh, fancy.
SIMON - I was disappointed, I know where I dropped a bit. I came home from a comedy gig with Tanyalee Davis who is a comedian, she's short like me, we both have mobility scooters, and the driver took about ten minutes getting both of our scooters into the boot of his Toyota Prius. And I was watching and I thought I'm going to knock myself a star down. So I blame it on Tanyalee, we overdid the 'Assist' bit. What was your score?
KATE - I was a solid 5.8 for a long time.
SIMON - Hang on, where are you coming from? If it's from zero…
KATE - Sorry, 4.8.
SIMON - Okay.
KATE - 4.8 for a long time.
SIMON - Yeah.
KATE - And then I checked this morning and I've gone down to 4.59 and I'm really upset.
SIMON - [laughs]
JAMES - Do you think it's because of stuff like mood? Because sometimes you just don't want to talk to people.
KATE - That's true, a lot of the time I don't want to talk to people, so I think maybe.
SIMON - Did you get a score for your one trip Penny? Do you know what your score was?
PENNY - No, well it was done through someone else. She's doing it the clever way.
SIMON - Oh, okay. Is that Kate's account?
KATE - No it wasn't.
PENNY - Everyone's got access to mine. It was another disabled person. But, another story.
SIMON - I don't worry too much about the rating.
KATE - You've got to because if you drop below a certain level they're not going to come and get you.
PENNY - But now they're gone, is that the…?
SIMON - They've already apologised almost for all their practices. I sense there's going to be a consensus.
JAMES - I mean there's been a comment from, I think the CEO, kind of addressing some of the concerns, thinking that they're going to work together with TFL to figure it out.
SIMON - And again, if you can overcome the concerns about how they operate, I cannot imagine, or can't remember having this much freedom that I have.
KATE - Oh I know, it's incredible.
SIMON - Everywhere I want to go, and I just walk out of the café or wherever I've been and it's there in about two minutes. It's one of my most nervous times of trying to get into a black taxi with a scooter because a lot of them don't want to help me, Uber drivers jump out before I've even asked them to. It's difficult this, isn't it?
JAMES - I've had that same experience when I came out of hospital with a leg that was fully extended on a big old electric wheelchair, and first of all the leg hits everything if you're trying to get up a ramp into a black cab, they're quite steep ramps in some situations, and I can't actually fit in any of them. So before Uber was a thing I'd just be trapped on the pavement in the freezing cold of winter trying to call up loads of different local companies saying, "Where's your wheelchair accessible vehicle?"
KATE - But is it just about a good app?
JAMES - No, it's been used by able bodied people.
KATE - But is it just that if a cab company brings out a good app we'll all use it?
SIMON - I don't mind who does it but… And I do think we need more competition, they kind of had it sewn up didn't they?
PENNY - I don't think that black cabs are hugely accessible, I agree with James, that I've had many tipping incidents because the ramps are too steep.
KATE - What's a tipping incident?
PENNY - A tipping incident, as it sounds, is where you're going up the ramp and it's so steep, and in a power chair, a big power chair that's scary because people can't suddenly push you forward.
JAMES - Sometimes the motors can't make it as well I find and you're running out of juice.
PENNY - Yeah, definitely.
KATE - Yeah.
SIMON - Oh…
KATE - Tricky.
SIMON - Yeah.
KATE - Moral dilemmas.
SIMON - James, your next story. Gaming, that's playing games on computers like consoles, Xbox, PlayStation. Do you play computer games yourself?
KATE - We should explain that you have lost one arm and one leg in an accident in 2012, is that right?
JAMES - Yes, that's right.
SIMON - Before or post the Paralympics?
JAMES - I think the Paralympics were just coming up after my accident.
KATE - Did you have time to get into the Paralympics or…?
SIMON - That was a bit close to home.
JAMES - I remember I was… Yes, maybe. It was a weird one actually because my boss from my job at the time said, "I've got tickets and we're going to take you." And I was like, okay, like what is this? Is this like a pet event, am I being prompted to take up extreme…?
SIMON - Psychologists call it flooding, it's where you're exposed to something you're really a bit nervous about. I mean, jeepers, that's a big old exposure.
JAMES - It was weird, especially kind of being suddenly from my normal height of six foot five and then being put into a wheelchair, just dropping down to a level.
SIMON - Wow, wow, wow.
JAMES - And then going through the Olympic Park when it's crammed with people and just kind of going oh my god, this is what it's like down here.
KATE - Hello world from a different point of view.
JAMES - Yeah. Crowds are easy when you're six foot five, but then when you're down there it's like oh, it's quite claustrophobic.
SIMON - There are ways and means, I can reassure you. [laughs]
KATE - Do you need two arms to game then James?
JAMES - No, you don't need… Well, this is the problem, on 29th September there was an event by SpecialEffect which is a charity that helps gamers try and get into more video games and kind of provides them with the kit that helps kind of facilitate.
KATE - So is it for disabled gamers?
JAMES - Disabled gamers, yes. I missed that word, I should have said disabled.
SIMON - So if you do have one arm and it's a two-handed game they've got a bit of kit that could allow you to play it?
JAMES - Yeah, I mean the stuff they do is incredible, they'll map it to kind of shoulder switches, puff tubes, any problem you have can be addressed by them, it's incredible.
KATE - So what do you play and how do you play it with your one arm?
JAMES - For me, SpecialEffect were really kind to help me out soon after my accident because yeah, the first thing I thought is how am I going to play games?
SIMON - Seriously, was that the first thing?
JAMES - I don't know if it was the first thing, I thought that my friend brought it up and I was in hospital, I was like gosh darn it, please don't talk about that right now because I thought there's no way I'm going to be able to do this.
KATE - I love that. You fell under a train, you lost your arm and your leg and you just think oh, how am I going to play my Xbox?
JAMES - It does come to mind pretty soon because you're just sat in a hospital bed and you're just propped up, and what I usually do when I'm just sat around is video gaming, so it's kind of immediately drawn to my mind.
SIMON - So what do you use? What assistive technology have you got?
JAMES - I tried a whole bunch of things, including these little switches that could be under my feet and to the side of my hips to kind of move around and get into the game, but I found it kind of like learning to ride a bicycle, it was kind of tough, and also I found that I didn't really need to do it. So what I do now is I hold the control with one hand and basically everything that's on the left side I use my face for.
SIMON - Your face?
JAMES - Yeah.
KATE - Okay.
JAMES - So I bring it up to my face and I get quite personal with it and so I've got my sort of lips and my mouth on the little joystick thing and I can reach over and kind of put the control a little bit into my mouth and control the triggers and the buttons on top of the controller.
KATE - That's cool.
PENNY - Wow!
SIMON - Is this a euphemism? [laughs]
KATE - Are you as good as you were before? Are you better with your mouth?
JAMES - I probably… You know what, I think in some ways I can be as good as I was before, because it kind of, I can still do all the things, it just requires a lot more cognition because it's a less natural interface I guess. So it requires me to think and so if I've had a…
KATE - Of the game, the joystick, the controller.
JAMES - Yeah. If I've had a lot of coffee and I've been well rested maybe I can beat all my friends, but if I'm kind of a bit tired suddenly I'm a bit overwhelmed…
SIMON - That is often the way, you do it but you just do it slightly differently to how you did it before.
JAMES - Yeah. And the good thing about that for me is that I'm kind of fortunate enough to have the ability to do that.
SIMON - But also interesting that there is tech but you said no, I've got my own work-around, and that's how you do it.
KATE - I've got my mouth, it's all I need. On that note, we can't avoid it, your recent documentary was about robot love which is about sex robots, robots for sex.
SIMON - Makin' lurve.
KATE - There's a use for those in the disability world wouldn't you say James? What do you think?
JAMES - Well what I find interesting is that people that are pitching these sex robots are trying to kind of validate their creation, and so you see them saying, "Oh, it could be used for different situations, oh, like maybe disabled people can use it," and I just kind of wonder, sorry? What do you mean by that?
PENNY - Oh, it's the same old story. I can't help butting in now because 'disabled people don't make love', full stop, in any other way and we have to have a sex robot, a lover.
SIMON - Well, and the add on that if you say, "Well hang on, this is not appropriate," and they go, "Oh, but it's for disabled people." Oh, then it's okay, then it's okay.
PENNY - Yeah, absolutely fine.
SIMON - We make it valid do we?
PENNY - Yeah.
KATE - Would you use a sex robot Simon?
SIMON - I feel it's a bit like Uber, I probably would but feel a bit morally uncomfortable afterwards, that's my instinct.
KATE - Penny? Sex robot?
PENNY - Maybe in 1989 I would have.
KATE - A very specific year to go to but…
SIMON - Is that when 'Blade Runner' came out? [laughter] Why then?
PENNY - If you read my memoire you would know why.
JAMES - Oh?
SIMON - Oh, okay, okay.
KATE - Oh okay, interesting.
SIMON - Okay, I think we did get to that page.
PENNY - It's not just a…
SIMON - So it's a time of life which is appropriate for you?
KATE - Which we will come back to shortly, to hear about why that might be appropriate.
PENNY - Yes, yes.
SIMON - I mean how sophisticated are these James?
JAMES - Right now, I mean if you watch the programme you'll see.
KATE - Did you test one? Test drive for the programme? Did you immerse yourself that far into the world, give it a little test?
JAMES - Well unfortunately… Well, I don't know if it's unfortunate, we only had her for the time that the cameras were on and so yeah.
KATE - She couldn't give you a little extra time?
JAMES - I mean I drove her home in my car and she didn't really speak to me for some reason. Because basically this…
KATE - Did you not get on?
JAMES - Maybe. Maybe she doesn't like me or maybe she's just kind of not understanding, like sometimes you speak to Alexa or Ciri and they don't really get what you're saying.
SIMON - When I've seen them, the faces, I mean they're pretty well defined. Is there movement? What's that like?
JAMES - So the thing about these robots is that they've got essentially a sex doll and embedded sensors into it, in all of its special places, and you kind of have to touch them in the right combination to make them respond to you. Because they've put artificial intelligence inside the head of the doll.
KATE - Oh, so did you not know the right combination?
JAMES - To be honest it wasn't really high on the agenda.
KATE - That's awkward. Simon, didn't you have a little friend that you brought home from somewhere?
SIMON - People will judge me and it's not going to work very well. I don't… I was in Canada and someone told me about a gadget shop that had blow-up dolls of short people like me with the inappropriate name of, like Bridget the Midget was one of them, and she is a porn star. And I asked the shopkeeper to keep it behind for a couple of days while I wrestled with my conscience.
KATE - And then what happened?
SIMON - And then I bought it. And I thought it would be hilarious because I could tell my other short friends and it's sitting in the bottom of my dirty, what is it, my linen…
KATE - Your dirty drawer?
SIMON - Yeah. [laughter] And it's there and I don't know what to do with it now. I took it out of the box because I had to pack…
KATE - I think you know what to do with it.
PENNY - Oh, I think you should have her on display. I just think that's a magnificent story, Simon.
SIMON - Packing, the box was too big so I took it out of the packet, of the box, so now it's just a bit of plastic, and the one time in my life when my suitcase didn't arrive home the same time as me, two days later. I'm terrified.
KATE - Did you get it because you wanted one that was like you? Is that why you went for Bridget the Midget?
JAMES - That was my question.
SIMON - James, do not encourage her. No, because I'm very open minded, my partner could be of any shape or size, it wasn't that. I'd never seen it before, there were 20 men and there was the one women.
PENNY - Isn't it like sort of disability ephemera in a way?
SIMON - What do you mean?
PENNY - Well it's like a thing, it's a collectable.
SIMON - Exactly, exactly.
PENNY - I would have it for that.
SIMON - Yeah, that's why I did buy it and because I wanted to show it to my short friends for comedy reasons.
PENNY - He says, yeah. Yes.
SIMON - But I feel… Don't smile at me like that.
PENNY - Sorry! [laughs]
JAMES - I want to ask as well, what's the background to that doll's creation? Do you think that's from able bodied fetishism?
PENNY - She's real though isn't she? She's a real person.
SIMON - Yeah, and that's the bit that makes me feel a bit uncomfortable because I've encouraged it, for other people to buy it, but then if that's what you're into then fine. It's not quite devotee but it's an alternative, yeah.
PENNY - So Bridget the Midget…
SIMON - Is a real life.
PENNY - She's a real person isn't she?
SIMON - Yeah.
KATE - She's a real person?
SIMON - Yeah, yeah. I have her phone number. [laughs]
PENNY - Yeah, she's real.
SIMON - Yes. Have you not seen her films?
KATE - I have not, but maybe I will Google that later.
SIMON - Ever so talented.
KATE - You seem very acquainted with her work.
JAMES - Yeah, enamoured even.
SIMON - Again, it's disability research.
KATE - U-huh. Anyway, ladies and gentlemen, you're listening to Ouch, a talk show hosted by disabled people…
SIMON - I hope you're still listening.
KATE - …and if you want something a little bit cuter and not quite the same as this then just type 'inspiration' into Google instead.
SIMON - [laughs] Inspirational porn and see what they get.
KATE - Coming up.
KATE - That was 'Love You Till I Die' by Australian band, Rudely Interrupted, which I feel like we rudely interrupted them. I was really enjoying that.
SIMON - This is the weirdest show anyway, I don't care.
KATE - Oh, it is. You've got about half an hour now to puzzle over what impairment you think the band members have until we tell you at the end. Tweet in your guesses, we'll have no idea whether you've tweeted them after you know because it's a podcast so who knows, but we will tell you at the end anyway.
SIMON - We'll give you the clue that Damon is our producer today.
KATE - Yeah, Damon's producing today's show and we all know what kind of music he likes.
SIMON - You betcha.
KATE - Anyway.
SIMON - Dan?
KATE - Have we got any news on the final item?
DAN - Exciting news. So we've been through…
KATE - Oh, Dan's just rushing into the studio.
DAN - We've been through I think three apps, we've been through… I'd better not name them because then people might get upset, but anyway, finally we are through, in the other room, on a screen, I've seen him, he's our guest, through Facebook.
KATE - Great. So we have got a final item?
DAN - So far. As long as the line doesn't go down. You see these fingers well and truly crossed.
SIMON - Has the interpreter spoken to him and maybe it makes sense?
DAN - Yes, they've made connection, they can see each other. In the gallery they can see each other, so it's just a question of transferring that operation into here and hoping the line doesn't go down.
KATE - Excellent work Dan, awesome.
DAN - Stay tuned.
SIMON - James Young is still with us, but now it's time to turn to disabled writer and activist, Penny Pepper. You're here to talk about your latest book, 'First in the World Somewhere' which is a memoire.
PENNY - It is.
SIMON - It documents your life from when you leave your parent's home to live independently, that's quite a feat for someone who's significantly disabled, and it's up to more recent experiences, but first of all in those opening pages we have a glimpse of what looks like, well an isolated and frustrated Penny. Tell us about that person back then.
PENNY - That Penny was very much a rebel, living in isolation. Remember, this is the '80s.
KATE - But it felt that there was a turning point that made you a rebel, it felt like maybe it was inside you and then something happened and it was allowed to come out.
PENNY - Well Punk happened, first of all, but this was the time before any kind of social care support, any concept really of disabled people living independently.
SIMON - So you were reliant on family or you'd go to some sort of home or institution.
PENNY - I was mostly at home. I was in a long term specialist sort of rehab hospital some of that time.
SIMON - There was a phrase, 'school hospital'.
PENNY - Yeah.
SIMON - It kind of freaks me out I must say. How was that?
PENNY - Well it's in the book, it's that I have a rare form of arthritis and that's what this hospital treated, children with arthritis. So it was like being at a strange boarding school and I've only touched on that a little in this memoire, but it was very institutionalised. So I'd be there, that's where I'd make friends.
SIMON - The joy when you meet Tamsin?
PENNY - Yes.
SIMON - You could just… Both Kate and I loved your book by the way and I mean thankfully, because it would be really awkward if we didn't, but we did both love it, and the style and there's just something very cool about it, but you meet Tamsin and you can just see, it's like your world is going to open up because the two of you are as thick as thieves.
PENNY - Yes we are, we are, and the book's dedicated to Tamsin, who really opened up my world, partly because she had a secure family life, background, I didn't particularly, and she was just so sure and strong in herself, which in those days I wasn't, I was quite shy.
KATE - Can we hear a bit from your book?
PENNY - Okay. I've found a little bit that hopefully captures a few elements. And just to say in this short piece, in case you need to know, Sandra is the home help. The days of home helps.
KATE - This was after you'd moved out from your home into your…
PENNY - Into a flat in East London.
KATE - A flat in London.
PENNY - 'Today I'm still weary after a doze and Sandra's cheerfulness startles me. The juggling of her six hours' help a week, the permanent challenge, the choices we have to make. Tamsin is already in the kitchen with Sandra. I slouch out on my self-painted walking stick, all multi-coloured bells on the handle. Sandra asks about dinner, with a teasing smile, "What do you want to eat tonight?" Tamsin and me look at each other. I'm always stumped. My priorities are nothing to do with food. My hair is a mess; I can't bear Freddie to see me in a dishevelled state the next day. "Sandwich for me" I bleat, "No butter. Cheese and a teaspoon of salad cream please". "Nothing hot, Pen?" Sandra flashes keen eyes, "Oh no, missus, madam" Tamsin says, pulling a face, "I know what she likes hot" We all laugh. Tamsin can never let an innuendo go. "A sandwich is fine" I say. When my hair is finished, my fresh locks crimped into a large Kate Bush mountain of loveliness I drag a box into the lounge on my lap, wheeling my wheelchair with my feet. Minutes pass and I'm surrounded by cassette tapes. I find a rare bootleg of The Smiths' live tracks, pop it on my Walkman and listen as I sort out some more. Morrissey growls about mammary glands and I'm enthralled. I feel sad I haven't had another letter from him since moving to London, but I did get a Christmas card and a note about how soon is now, but nothing more.'
SIMON - Thank you.
KATE - What strikes me from that is how back then, when you were living independently in London, you had six hours of home help a week for you and Tamsin, who was similarly disabled.
PENNY - Yeah.
KATE - And then you've come in today to the studio with two PAs with you to help.
PENNY - Yes.
KATE - I mean, the world really has changed. How did you cope back then?
PENNY - We coped because we had to. And as young women eager for adventure in the big city we just did it.
SIMON - Youth helps, doesn't it?
PENNY - It does help. We did actually get, which is detailed a bit in the memoir that we got tired quite quickly. But it was right on the cusp of the independent living movement starting, and if anyone was going to take to that it was me and Tamsin.
KATE - So what were the things you had to do in order to cope without PAs? Did you just stay in bed? Because you talk about how you struggled to dress or go to the toilet. What were those downsides to living by yourself?
PENNY - In those days both of us could have got out of bed. We also had a lot of adapted things in our flat. So I had a very high bed, I could sit up on my own then, so could Tamsin. But it would be things like dressing: we had these constant payoffs, like did we get dressed properly, because sometimes with all the bits of gadgets to pull your clothes on and put them over your head that would take so much effort, it would take three hours, and then you just want to lie down again.
SIMON - Is that why on page 72 you haven't got a lot of clothes on whatsoever?
KATE - You're obsessed with page 72 Simon.
PENNY - He is a bit obsessed with page 72, isn't he?
KATE - He is yeah.
PENNY - We would do little jokey modelling sessions; that's what it is. Shall I do a little audio description of it?
KATE - Yes please.
PENNY - Or does Simon want to?
SIMON - No, I don't want to!
DAN - Chicken.
PENNY - It's a picture of me very early on in my flat. And this was probably originally a picture for my boyfriend Freddie. I've got blonde hair extensions; very rare then, we were right in with hair extensions in 1985. I'm naked, top half naked, with my hand across my bosom, wearing a lace glove. I have a little black waspy belt that goes around the waist, some little panties, stockings and suspenders, and I'm kind of pulling a slightly saucy pose - in my wheelchair, I should say. And what I love about it, purely chance, behind me is lots of books, really messy dressing table, and on the wall there's a picture of Morrissey with his hand raised like he's going, "No!" I love that.
SIMON - That's what I saw first.
KATE - Like that, Simon.
SIMON - It's almost like the punk bit helped because you could dress quite provocatively. And I know you've talked about sex in the past, as a young Penny that outlook about being sexually active and so on, what were the feelings then or what did you think your prospects were, for want of a better word?
PENNY - My life was split in two, like it often is for disabled people I think, where you have your dreams and hopes and then you confront the reality. In those days my dreams and hopes were very fuelled by what I was reading. This was just really not far into the second wave of feminism, so I was reading a lot of feminist literature. I was also noticing, I have to add, that disabled women weren't really featured in it, which kind of made me angry and want to write even more. But also about women who were free and bohemian - there's a bit of a theme about that: this idea of being a bohemian without really knowing what it was. But I think I knew I wanted to be - it sounds so precious - but I wanted to be free, and I felt somewhere in my young self I had a right to be free, to experience life and find it.
KATE - But did you think you would have sex? Did you always think, 'sex will happen for me'? Because it seemed like disability and sex just wasn't… there's one point in your book where you talk about going into hospital and they said, "Well, you're definitely not pregnant" because they just assumed you wouldn't be having sex.
PENNY- Yes, it was very like that then. But I never for one moment considered that I wouldn't have sex. I wasn't sure how or who I'd meet. I think that's still relevant today: I think younger disabled people still have that challenge in their mind. There's hardly a great representation out there of disabled people having sex or fully rounded relationships. Back to the sex robots; that's what we have, isn't it?
KATE - Exactly.
SIMON - Why are you looking at me again? That bit of your inner bit, and I emphasise with that, where you're like, 'I know this is fundamentally wrong and therefore I'm going to have to change it'. You use the word vanguard a lot and being at the start. And then you wrote was it to a magazine who talked about disability and barriers, and you wrote a long letter to them which they published, and you then got hundreds of letters from other disabled people as a result of that. That's just a fantastic story.
PENNY - I have to say though Simon the interesting thing, no, I didn't get any letters from disabled people.
SIMON - Oh, I misread it. I assumed they were.
PENNY - No. Jamming was a punk fanzine, that's what you mean, Jamming was a punk fanzine. But the funny thing was its strapline was 'breaking down the barriers', they meant to musical categories, to divisions of fashion and look and even politics to some extent.
SIMON - I see what you mean.
PENNY - And that did trigger me to say, "You've got this slogan, if you like, saying breaking down the barriers, but I don't feel that you really know what the barriers are".
SIMON - So the letters were from other people agreeing with you but not…?
PENNY - Yeah, but in different ways. That was something about the punk era and the post-punk era, all those people that wrote to me related to the letter from their perspective.
SIMON - Your writing style, which I love, this not a chronological 'and then this week this happened and then that', it jumps around and you can skip seven years and then be back. It reminded me a bit of Caitlin Moran or Danny Baker where they're memoirs but they're written in kind of almost a novel and just a lovely story that goes on. Did you get help with this? Was this something instinctively right for you?
PENNY - Well, anyone who does a book you go through a process. But of course I've been writing a long time.
SIMON - And at school your teachers were pushing you.
PENNY - Yeah.
SIMON - They saw this talent.
PENNY - One thing I did do with this book, which it was a lovely journey really, but I was encouraged to write in the present tense, which I apparently do well and do naturally, and that gives a story an immediacy. It's not the easiest thing to do.
SIMON - There are phrases that you use of a different society. There are words, and I just about remember it and some of the things, and that is, like Kate said, it's almost like a generation ago.
PENNY - The reason I can do that isn't just because I've got - I have got a pretty good memory, I remember things strongly emotionally - but I've also got the journals. They're not like, 'today I had toast for breakfast'. Some of them are in the early days, but there are things like talking about the Afghanistan war in 1979, which is when the Russians invaded; I was terrified there would be a nuclear war then.
SIMON - Sounds a little bit like today, that's the terrifying thing. We're getting invaded in the studio here. Our tech and Dan, sorry Penny, you're a serious writer and you're being interrupted by technology.
PENNY - [Whispers] I've got to go.
KATE - Penny's got to leave us now.
PENNY - No, just break. Is that all right?
KATE - Yes, off you go. We don't often see this.
SIMON - She's smart; she knows this is going to be a car crash! James is with us.
KATE - One in, two out. We don't know if Penny's going to come back. Who knows what's going on? But we've got Dan with us again. Once again Dan, hello.
DAN - Hello.
KATE - How are we doing?
DAN - We're doing well, we were doing well. We have with me Helsa, who's a sign language interpreter.
KATE - Can Helsa actually just move to the microphone?
DAN - I think she wanted a backdrop.
HELSA - I'm having a hard time seeing my interpreter clearly.
SIMON - That voice was the interpreter.
KATE - Okay.
SIMON - I think we could up for a radio award with this one. [Laughter] It is the joy though of access, and I do kind of like it when you crack it. It's just doing it differently again. Questions: who have we got?
KATE - Who have we got?
SIMON - We've got Emilio in Italy. Helsa's going to translate. And we've got Charlie Swinbourne on the telephone.
KATE - We can now speak to Emilio who is in Milan. I don't know if we mentioned the fact that he's down the line from Milan. Emilio, on September 14th you released your film Sign Gene to cinemas across Italy. And this is a proper cinema release, which sounds quite unusual for a deaf or disability film. It is quite a niche subject area. In summary it's like an out and out action movie about deaf superheroes. So can you tell us a bit about the characters?
EMILIO - [Via interpreter] I think it was a great move by UCI to release my movie, not about it being specifically about disabilities, but to release it as a film in its own right.
SIMON - We have a clip, don't we?
KATE - We do. Let's hear a little bit from Emilio's movie.
VIDEO - Sign Gene was a genetic mutation that according to recent studies emerged as an evolutionary response to centuries of social and linguistic oppression. It enabled mutants to develop supernatural powers through the use of sign language. The Pentagon created a new agency to work with the Secret Service, the QuinPar Intelligence Agency.
SIMON - As you can imagine this is a very visual film, not surprisingly. Emilio can you, in a nutshell, tell us what the story is? What's the plot of the film?
EMILIO - The plot of this film is that the leading character, whose name is Tom Clerc, comes from a long line of deafness, starting with Laurent Clerc who was the originator of having the super power. And the super power has to do with a mutation in the genes, and that's what we call the sign gene, so that is the mutation of the gene. And his goal is to protect this gene and to make sure that it persists because there are other people who would like to see this gene eradicated. And that's the main plot. The people that are connected with the organisation, which we call 184.108.40.206, 1880, that's the name of the group that are trying to eradicate the sign gene.
KATE - And what are these super powers that the heroes have?
EMILIO - The super powers are certain actions, and the actions take place through the use of sign language. I can give you an example of this: the sign for cigarette, you would sign it, so with one hand on your mouth looking like it's a cigarette, with your other hand shaped, using the sign for lighter, and you would motion for the hand with the lighter in it to light the cigarette, and it actually provides a flame so that you're able to light the cigarette in actual life.
The other one that we use in the film a lot is the hand shape for gun, which manifests in the actual capability of shooting bullets. So the bullets shoot out of the hand shape that's used in sign language for the gun.
KATE - That's pretty cool. I watched a bit of the film last night.
SIMON - Me too.
KATE - We managed to get a sneak preview, and it was pretty epic.
SIMON - It's full on! Fast edit, noisy, action packed; there's a lot going on. Although the curious bit was because there's not much speak at the beginning as a hearing viewer I had to really concentrate to try and make sense of the beginning.
EMILIO - Right, so in the film there are six languages being used: three of them are sign languages, so for the visual audience members, and three of them are spoken languages. So some people are able to enjoy certain parts and access it, and then others have to wait and then it flips back and forth between who has full access to the movie. So it's a real sort of babble, lots of different languages and things occurring at the same time.
KATE - Tell us about the enemy. Who are the bad guys?
EMILIO - The enemy, his name is Jux Clerc, who is the brother of Tom, so both of them come from the same lineage, going back to Laurent Clerc, which I talked about earlier. But if you want to know more you'll need to see the film. And they'll be, hopefully in the second and third renditions of the film, sequels, you will be able to see more.
KATE - Why are the bad guys called the 220.127.116.11?
EMILIO - 18.104.22.168 refers to a historical meeting that took place, it was a conference that took place in Milan in the year 1880, and at this conference they tried the xx sign language for use in school systems and where deaf children were being educated. And the result of this conference has had a massive impact on deaf education worldwide: it's had a massive impact on deaf social life, on employment for deaf people, a lot of deaf educators were fired obviously because they use sign language to communicate, and that's what they were saying nobody would be allowed to do anymore. So the bottom line is that auditory language, sound language as I call it, was afraid of the signed language. Visual languages were new at that time. People were unsure and didn't understand them as well, and to use them in education was scary for the people at that time. So as sign languages were growing and developing the non-signing community really tried to just nip it in the bud and make sure that that didn't become prevalent and was very oppressive to the signing community.
But now today we have a lot more technology, there's more access, there is more transparency today. You can see the existence of these beautiful signed languages which are incredibly visual, and they require space, they require space to grow.
And as an individual who comes from a deaf family myself I strongly believe that all schools when teaching deaf children should use both sign languages and there is a place for auditory language as well, for example you can have that. So you can use English, you can use English to speak with in sound and then you can have its visual component.
SIMON - Emilio, just pause for a moment. Listening down the telephone line is deaf film maker Charlie Swinbourne. Is that how you refer to yourself Charlie.
CHARLIE - I've got all kinds of descriptions!
SIMON - You've seen the film Sign Gene, what did you think?
CHARLIE - I really enjoyed the film and I think it fits in very well with the kind of European deaf film making scene. It definitely feels like, from a British point of view, a European deaf movie. It's got a very visual sensibility; it really feels like it's made by a deaf director. And I think that's a wonderful thing because lately in this country and I'm sure abroad there has been quite a lot of non-deaf people interested in sign language making deaf-related things, which is fine, but it's really lovely to see a film being released in the cinemas that's authentically from a deaf person who's actually using quite a lot of deaf history and heritage as influences within his film.
SIMON - And very subtly put in there: the 1880 is a lovely reference that you can get on so many different levels.
CHARLIE - Absolutely. I think that what happened in 1880 is something that deaf people still talk about. It still has a really big impact on deaf education nowadays I think in respect of using sign language or not using it. So it's really nice to see the literal references in numbers and references to the past that are very much a part of things being made now.
KATE - Charlie, tell us about the theme of the deaf families in this film.
CHARLIE - Certainly in the deaf community there are families that go back many, many generations, and that's true in Britain. There are certain families that you could mention their surname and everybody in the deaf community knows about them.
KATE - Really?
SIMON - I never knew about this.
CHARLIE - Obviously because of the genetic element maybe there are people with an actual kind of super gene that really has meant it goes back eight generations - and I'm not exaggerating - and there's a lot of pride in that because in the deaf community, as elsewhere in the disabled world, there is pride in your deafness, disability and your identity that comes from that, and so it's seen as a very positive thing.
In this film that heritage, that sense of families going back a long way and being around in maybe 1880 or being part of the beginnings of deaf sign language being developed and passed on. So it's that kind of sense of people going back a long way. I think all of deaf culture and sign language there is a knowledge that there is a beginning in the sense of deaf people using that language. I think even if it's not always people you're directly related to, there is a sense within deaf culture of that history and of where these things began, and that's obviously an influence in this film.
KATE - Charlie, thank you so much for chipping in on that. Emilio, has Charlie got that right?
SIMON - Did Emilio actually get what Charlie said, because we've got all sorts of tech issues going on?
EMILIO - From what I saw from my interpreter interpreting I'm very happy with what he said. It sounds like he really understood the film. The editing is quite quick in the movie and it sounds like he really caught the themes and the references, so Charlie thank you so much.
KATE - Emilio, where can people see this in the UK?
EMILIO - We're still working on the plans for being able to release this in the UK so we'll see how we're able to progress. If there's any sort of help that you can offer that's great!
KATE - Any distributors out there listening to the Ouch podcast do drop us a line and we will put you in touch.
EMILIO - Yes please!
KATE - Emilio, thank you so much for your patience with all the access issues. It's been brilliant to talk to you, thank you so much. And yeah, look out for Emilio's film Sign Gene that will be coming out hopefully in theatres soon.
SIMON - That's the end of the monthly talk show from BBC Ouch. We'll be back at the beginning of November. We just thanked Emilio. Thanks also go to Penny Pepper, to James Young, Charlie Swinbourne, plus the interpreters and access workers who have helped make this show happen. Thanks to the team, Dan Gordon, and studio manager Nasser Pervez and the producer was Damon Rose.
KATE - If you're listening by podcast please rate and review Ouch, and like us and share us wherever you see us. The reason we ask you to do that is so more people get to hear about us. It seeps into those algorithms and helps other people who'd like to find us at Ouch more easily.
SIMON - Penny?
PENNY - Yes.
SIMON - I have two questions for you. What was the name of your book, for one thing?
PENNY - Do you know, I was just thinking that Simon. The name of my book is First in the World Somewhere: the True Adventures of a Scribbler, Siren, Saucepot and Pioneer.
SIMON - Now, I don't want to ask this but my producer wants me to. Where did you disappear off to a few minutes ago?
PENNY - I had to say goodbye to one of my support workers basically.
SIMON - That's the sort of hot news that we have.
PENNY - You like that hot news, yes, yes.
SIMON - Yes.
PENNY - I'll let you into a little secret.
SIMON - Go on.
PENNY - It was actually my niece who I'm training up.
SIMON - Oh nice.
KATE - Keeping it in the family.
PENNY - Yes and she's a very lovely person.
SIMON - Like the deaf mafia.
PENNY - Yeah exactly.
SIMON - Kate and I are here for the first week of every month for this hour-long show. But in the weeks we're not here we put out shorter interviews and features on this feed, so Ouch is with you every week.
KATE - Time for some music. If you were listening earlier you heard a quick snippet. It's a track by Australian band, Rudely Interrupted, who you may have heard us play before on this show. And disability fans, the band is made up mostly of people with learning disabilities.
SIMON - That's what it was.
KATE - Of course, because Damon loves the bands with learning disabilities.
SIMON - He does.
KATE - Good job really or we wouldn't have had them on. This track, which is also the title of their new album, is called Love You Till I Die. Look out for us in November. Until then goodbye.
SIMON - Bye bye.
[Music plays out show]