Ouch Talk Show #90 August 2012
bbc.co.uk/ouch/podcast

Presented by Rob Fraser and Liz Carr

rob	Thank you for downloading the October podcast as we pick ourselves up off the floor and try to work out what's next after that big event which happened somewhere in East London. Liz, do you remember? 	
liz	Vaguely. Something to do with sport. Anyway coming up on the show today, it's now been almost a month since the Paralympics ended, well such a lot was spoken about a positive legacy of the games after it all went off so well. But is the momentum still here in October? Tony Garrett and Paralympian Baroness Tanni Grey-Thompson join us to discuss this and to remember the highs. 	
rob	And Welcome to Biscuit Land, that's the title of a new book by Jessica Thom which gives a colourful account of her life with Tourette's Syndrome and Jess joins us in the studio later. 	
liz	And a new learning disabled punk band has arrived on the scene, Pertti Kurikan are from Finland and we'll be playing out with a very noisy track from them at the end of the show. 	
rob	So that's punks, tics and Paralympics - what could possibly go wrong? Stay tuned. 
[Jingle: From London it's Ouch, disability talk from the BBC with Liz Carr and Rob Crossan.]
Big welcome back to shirking, skiver Liz Carr.	
liz	Thank you very much, it's been about three months hasn't it? Wow! 	
rob	And it says here in the script that I should now have a brief hiatus for us to have excitement about Liz Carr being in 'Silent Witness'. How brief would you like this to be? 	
liz	30 seconds of silence? 	
rob	Yeah? What's your character called, by the way? 	
liz	I'm Clarissa Mullory. Isn't it a great name?	
rob	Clarissa Mullory - so many syllables. 	
liz	And the great thing is she's not disabled in the show. 	
rob	Really? 	
liz	No it's a lie! 	
rob	She's massively disabled. 	
liz	Yeah of course. 	
rob	Is she more disabled than you are? 	
liz	How could you be? 	
rob	No I was going to say! 	
liz	How could she physically be?	
rob	Is it a dismembered head or something? 	
liz	But it was a big discussion in the audition like would she have a PA, a helper, because I've got a PA in real life. So she's really interesting. She's a forensic technician. It should hit the screens in January and it's a regular character. So I guess in January I'll be interviewing myself. 	
rob	And I must ask first of all car chase factor - how likely am I going to see you in any car chases? 	
liz	I think since it's mostly about forensics and dead bodies there probably won't be many. 	
rob	And rumpy-pumpy factor? 	
liz	Series two. What I'm chuffed about though I am quite a regular character but my friends, when I told them I got the job they were all like, "Are you playing a corpse or a psycho killer?" And at the moment I'm neither of them and I don't die in a major assisted suicide tragedy- yey! Not yet, not yet!	
rob	Yeah I was going to say. 	
liz	When you see the acting maybe. 	
rob	When they want to write you out then...	
liz	That's the one. 	
rob	...be fairly sure that's the denourement. And there's no love interest though you're not getting it on on the lab floor.	
liz	I'm married. I am married in the show. 	
rob	Oh I see. Is your husband in the show? 	
liz	I can't talk about that yet. Well that will be January so I guess maybe we'll talk about it again. No doubt you'll laugh at me more then. But Tony Garrett. 	
tony	Hello there. 	
liz	Not laughing at you. Thank you very much for coming back. I was wondering is there life after the Paralympics, how are you coping? 	
tony	There is definitely life after the Paralympics. We all had a bit of a blast back in August/September but life is moving on.	
rob	And hang on a minute how well did we do then? Because I believe we got more medals than Beijing? Did we? 	
tony	Indeed, indeed we did. We got more medals than Beijing 18 in total, but we finished third...	
rob	Hang on a minute 18? 	
tony	18...	
rob	Golds? 	
tony	No, no, no 18 total. 	
liz	Is that it? 	
tony	Yeah 18 medals in total more than Beijing. 	
rob & Liz	Oh more!	
tony	Than Beijing. But...	
rob	18 that sounds like something Papua New Guinea would get, that sounds rubbish. But...	
liz	And they only had one person.	
rob	So how many did we actually get then? 	
tony	120 medals. 	
rob	Okay that sounds more like it. 	
tony	That sounds like it. Of which 34 were gold, 43 were silver and 43 were also bronze. 	
rob	And who came above us then? 	
tony	But we finished third in the table. We were hoping to finish second. But this time China were first, as quite predicted. Russia pipped us to the second post with an extra two more gold medals. Russia have really, and Ukraine who were one of the big success stories, they were the queen bees and the masters of Paralympic sport. 	
rob	Hm. 	
liz	Now on a lay-by, on a motorway I think we have Paralympian Baroness Tanni Grey-Thompson. Are you there, Tanni. 	
Tanni	Hello. Hiya! 	
liz	Hello. Now we're going to see how this goes because you're on a mobile, your phone's broken. 	
tanni	Yes. Well we don't know if it's my landline or my phone so I rushed out to buy a new phone and I haven't made it back to my house in time. 	
rob	And now you're loitering on a lay-by alone. 	
tanni	Yes I am, it's very glamorous isn't it? 	
rob	Hm well glamorous wasn't the word I was going to say but anyway. So, Tanni, what were your highlights of the London 2012 Paralympics? 	
tanni	There were so many athletes' performances which were just stunning. But I think one of them for me was the fact it was just a sell-out crowd. The athletics they had 82,000 people in every day, every session. And there hasn't been an Olympics that's done that before, but the London Paralympics was able to do it. And it did help that the Olympic team did well, the weather was nice but there was just this amazing buzz that people wanted to come and watch Paralympic sport. There was one moment, I was going home on the tube quite late at night and I overheard two girls talking about Oscar Pistorius and Jonnie Peacock and they weren't talking about sport they were discussing who was the hottest. And I think that was like a big step forward in terms of two non-disabled girls just you know, asking each other,  who would you snog and that was brilliant. 	
rob	And did the level of media coverage in the biggest national papers did that surprise you, were you expecting it to be on the front cover of the Daily Mail?	
tanni	No I wasn't expecting it to be on the front cover of some papers. There were also sports journalists who I saw at the Paralympics who would never have covered a Paralympic sport before. And the interesting bit is are they going to do it afterwards - well we'll probably have to wait a couple of months to see that because pretty much everyone is going into off-season. But there were people who were talking about sport for the first time. It's not going to be the same again because the games were this sort of fairy dust moment but I do hope that has changed the way that a lot of newspapers think about covering disability sport. 	
liz	And, Tony, has it made disability sport sexier? 	
tony	Well I think it certainly has. And I think interesting what Tanni was saying there is that I was surprised, pleasantly surprised by the amount of coverage the newspapers did give it. In the past we've been critical. Tanni and I have been covering Paralympic sport for a while. In Beijing I think there were four British journalists out there from the written press. Certainly the sportswriters 'got' the Paralympics, the real test will be will they follow it up and will they do regular articles and columns. And that to me is one of the big things and we need to see how the next six months ago. I think also what was great is that lots of youngsters went, lots of obviously...eighty odd thousand in the athletes, swimming it was sold out, track cycling and I think the key night was, Jonnie Peacock's 100 metres and it was one of the greatest sporting nights I've ever been to - and I mean sporting nights, I don't mean Paralympic nights! And that was a major, major event and people were coming away saying, "We've blown away the disability angle, this is sport. This is sport at its top, elite level." And that made a major difference. That was probably one of the most historic sporting nights in Paralympic history ever. 	
rob	So you believe it's very much a sporting event first and a disability event last?	
Tony	Absolutely! The key to it is to see how we can continue that. And I know there's a buzz word 'momentum' that's being looked at, but that is going to be the key thing how we now carry this forward. And the one drawback, and it's the same for Olympics to be honest with you, you know we all have this great season, we've had a tremendous year, but Olympics and Paralympics it stops for a bit whereas with other sports like athletics, golf - you know the Ryder Cup, they continue all year round; Paralympic sport does but it's a much lower level and I think that's going to be the key as we move forward. 	
liz	Well a question because I was reading that coverage internationally wasn't as great as there was in the UK, I mean we had wall-to-wall coverage basically of the Paralympics. And MBC, the American channel, said the problem for us we only did a few hours because we felt that audiences were fatigued by it, that they'd seen the Olympics and that had been almost a full-time thing. And they said the Paralympics people were tired by then, they said maybe there should be more distance between the Olympics and the Paralympics. Tanni, what do you think about that? Did it come at the right time? 	
tanni	I think the gap is actually great because you need to be able to carry on the excitement of the games. Everyone needs a bit of a rest, but I think a bigger gap would be a mistake. And I think, to be honest, in the USA there is very, very little coverage of disability sports. I don't think this is about timing at all. I think it's just that they're not interested. And bizarrely where you have, you know, their legislation is very strong, they've had sports scholarships for disabled athletes at universities for a very long time, you know, 30/35 years they've had sports scholarships, but they don't get the coverage. And I think that's a massive disappointment. I think we've got to look a little bit at the TV companies, their written press is quite disjointed so that's quite hard unless there's local coverage. But I think we've got to look at things like the US Olympic Committee and that the change and the challenge has to come from them, and they have to demand that there's more coverage. 	
rob	I mean obviously the bigger networks in the States, the ABCs and MBCs they're not going to do it unless it's commercially viable in terms of advertising revenue and listeners. So how can that be brought about? I mean is it really a case of the Olympic Committee just getting an incredibly good sponsorship deal with Coca Cola or whatever would that be the answer? Or is it something more grass roots that needs to change do you think? 	
tanni	I think it's partly sponsorship but again a lot of the big companies that are associated with the Olympics sponsor US Paralympians. I think the US Olympic Committee has to package up the TV rights and sell them together. Because they might not be able to manage the coverage that we get but I think four hours is appalling. I think one to two hours a day is something which is much more acceptable. And in a country where they tend to mostly show their own athletes I think an hour a day is the absolute minimum that they should be allowed to get away with. 	
liz	Well as well as the sport of course there was the opening and closing ceremonies, many guests that we've had on here were in the opening ceremony. And Mat Fraser, the ex-presenter, he was in both, playing with Coldplay at the end, I know you were at that, Tony. 
from Lord Sebastian Coe's closing ceremony speech. 
We will never think of disability in the same way again, that's what he says. Tanni, do you think that's true? 	
tanni	I think it was absolutely definitely true around the time of the Paralympics and I thought what was amazing for Seb Coe he mentioned the Paralympics as part of his Olympic speech and that has never been done before. But there was an amazing positive feeling and I think people are more positive towards disabled people, but I guess when we see next year's hate crime figures then we'll have a better view of whether there's been a real change or whether it's been a moment in time. I hope it has been more positive, I don't think now everything is going to right with the world because the Paralympics were amazing. I think that would be a bit naive. But there feels like there's been a bit of movement. 	
rob	So many British victors in the Paralympics also means we have probably the most competitive field for Sports Personality of the Year ever! So, both of you, Tanni and Tony, I'd like to know who should we be hedging our bets with, who deserves it most? 	
tony	Well I think it's going to be a tremendous Olympic and Paralympic year and in theory there's going to be the top ten list that will determine where we go. And one of the key things is that hopefully there must be at least one, two or even three Paralympians that should be in that top ten, we've already said it's competitive with Andy Murray now and the golfers. But in terms of top ten, I'm sure Tanni would agree, it's David Weir had a tremendous games and he's an unbelievable athlete, one of the best in the world. So David Weir, Ellie Simmonds you know had a remarkable games, she's still on 17. And of course Sarah Storey who equalled Tanni's record at 11 - they are three of the top names that Tanni could get into the top ten or are we being too optimistic to get three in do you think? 	
tanni	Do you know what, I think three would be a really decent number, and actually those are exactly the names that I would have picked. I know Dave was disappointed not to be in the top ten around Beijing because he won two gold medals and had some amazing achievements in that season. But to be honest I think picking ten out of all the Olympic and Paralympic success is going to be impossible. You actually start discounting Olympians with a single gold medal, and that's a pretty nice position to be in, apart from if you're the athletes who are getting discounted. So I think it's going to be impossible. Do you know what, it might even be, for one year, that we might have to have an Olympic and a Paralympic award, which I wouldn't support at any other time, or a Gamestime award and some way of celebrating other sport. But it's been one of those amazing summers where, you know, Andy Murray winning the US Open - all those other things stacked up together it's unbelievable. 	
liz	Now sport and exercise isn't only for tone, super symmetrical able-bodied people, thankfully. And we've learnt that through the Paralympics so we asked you on Twitter and Facebook whether the recent visibility of Paralympic athletes would make you feel more comfortable about going to the gym. 	
rob	Meg Kingston got in touch with us on Facebook. She says, "Our local leisure centre offers no reduction in price for people with disabilities, and also will not allow me to use certain equipment. So I have to pay full price and then they decide what I'm permitted to do. Needless to say I don't go there." 	
liz	criquaer , I don't know if that's how you say it I'm really sorry. This came through on Twitter "Before illness I was a gym bunny but now exercise is the worst thing that I can do for my condition." She tells us that exercise has been banned by her medical consultant. I kind of wish I was in that situation. Tanni, can I ask you do you still go to the gym? 	
tanni	I do, not with a huge amount of regularity. I've got a bike which I do a bit on that. And I actually make sure that I push my day chair an awful lot. And I think it's really important that I try and stay fit and healthy because actually it does make things like transferring in and out of my car or doing the things I want to do for daily life it does make it an awful lot easier  	
rob	Do you get recognised in the gym very often? Are people asking for autographs while you're on the rowing machine or whatever?	
tanni	Or people saying, "Is that all you can lift these days?" That's usually the one I get. It's quite off-putting for a lot of people to go to gyms. An awful lot of women, whether they're disabled or non-disabled, find it very difficult because there's a huge array of equipment you don't know what to do, you don't know how many sets, how much to lift and I think people need a bit more help and guidance to actually just walk through the door. 	
rob	Well let's read another Facebook letter, shall we say - you can't really call them a letter can you? 	
liz	Comment. 	
rob	A comment, yes from Glyn Everett, that sounds so old fashioned. "My local council run gym" says Glyn, "is fantastic - accessible, cheap - £10 a month, equipped with hand cycles and not full of gym monkeys" - what does mean what's a gym monkey?	
liz	I don't know but I like it. 	
rob	"...as long as I get there early enough. Paralympics have made no difference but I do feel much better for having started going 18 months back. I would strongly advise everyone to give it a go if they can." 	
liz	Ellie Hawkins, I think we're possibly kindred spirits. She wrote in to Facebook, "Laziness is the only thing that stops me from going to the gym." Of course that's true. 	
rob	So let's go back, Tanni, are you still there? 	
tanni	Yes, hello. 	
rob	Hello, Tanni. So I'll fire this to you and Tony, when the gym's not an option, let's say, exercise can still be done but what other things can disabled people do to get fit? 	
tanni	Well there's lots of things. You don't actually need lots and lots of very expensive equipment. It's actually going out either walking, pushing your chair - finding some way that you can get your heart rate rising and getting some exercise. I actually do a huge amount at home with very light weights, which is all about flexibility and it's not about building my strength anymore. Also there are a few books, there's not a huge amount out there for somebody who wants to just be fit and healthy, but there is information that you can get. So Pilates, things like that, you can do an awful lot of that at home with a little bit of help and a bit of instruction so it doesn't have to be incredibly expensive to be fit and healthy. And of course it is also thinking about what food you eat, how much alcohol you drink, you know think about what goes in and that can make a big difference too. 	
rob	One thing I was thinking earlier though is that we're in such a culture at the moment where obviously so many people with disabilities are castigated with these accusations of being benefit scroungers and whatever, do you think there's a fear that people with disabilities don't necessarily want to be seen in a gym because it could lead to them being, shall we say, shopped in or it could lead to accusations of them not being disabled enough, or their benefits being taken away?	
tanni	I think it's more actually that's it's quite off-putting to go into a gym for the first time. If your experience of sport in school was negative or you don't know what you're doing anybody going into a different situation where everyone else who's there seems to know what they're doing does make it really difficult. But I do think there is an element of disabled people being worried about showing what they can do. My argument's always been if disabled people are fitter and healthier they'll be more able to get into work. And I've always said the benefit system shouldn't be about what you can't do it's about what you do with help and support. So I think there needs to be a cultural change in the benefit system and we should be encouraging, and to some extent prescribing fitness for disabled people to help them live with their impairment. And we're not talking about elite sport because that's not what an awful lot of anybody wants to do but about the right skills to be fit and healthy. 	
rob	A prescription for a gym membership from your GP might not be such a bad idea. 	
liz	But the thing you know I think probably one of the reasons I wouldn't go to the gym is it's all that lycra, it's all that sportswear do you know what I mean? Bad experience at cirque du soleil, I'm frightened.  	
	And I think that is a genuine fear that puts people off going to gyms and I totally understand that. And that's why I think in many ways you've got to control it yourself. As Tanni said do some stuff at home and general exercise and general self control is probably one of the best things you can do. 	
liz	A helpful comment from Katie-Lee on Facebook says that you know cost was the reason why she stopped going to the gym instead she uses a games console at home, has a passive trainer bike and says, "I'd rather use my money to buy equipment to use at home" or you know to not have to travel, the cost of travelling to the gym and use that money on things that help me exercise at home." 	
tony	Absolutely.	
liz	You don't have to go to the gym to keep fit. 	
rob	Gyms can be scary. Who is it that controls the music policy in gyms? It's always early 90s hard house which reminds me of being at a school disco. And I just find it wears me down horrifically. 	
liz	I think maybe a problem sometimes with disability sport or trying to get disabled people into fitness as I once went to those open days with lots of stalls and information for disabled people and they did a little bit of an exercise, a sitting exercise-a-thon, and it was kind of about lifting the cans of beans. 	
rob	Oh God!	
liz	And lifting your leg a couple of inches from the seat. Now actually for some people that's important and doing all that, but it just kind of made me go: oh I don't want to do that. 	
rob	It's too ritualised isn't it? I think if you have a remotely rebellious bent in you then you really just don't want to do anything which is that controlled. I think that's essentially it. So maybe having a games console at home. 	
liz	Maybe.	
rob	But the thing is I'd just use it to play darts or something, I wouldn't do anything active with it at all. Do you have a games console, Tanni, do you do anything like that? 	
tanni	I've got a games console I don't use it to be perfectly honest. 	
liz	I was going to say is there a Paralympian games because that would be great, do you win at that?	
tanni 	There's not. 	
tony	What a good idea! 	
tanni	That would be amazing. 	
rob	Boccia on the Wii. 	
tanni	Amputee running on Wii. It's little and often that's the secret as well. I think sometimes when you think about you have to go to the gym for an hour and it just seems like such a Meh thon. Actually 20 minutes at home every day can make a big difference to what you do. So it's doing it in bite size chunks that aren't really scary and off-putting. And I know you said you hate the baked beans thing but that's really good, especially if you've got slightly dodgy shoulders like I have these days, doing things that improve your flexibility is really, really good for you, especially if you're thinking about 30 years down the line. 	
liz	Brilliant. Well, Tanni, thank you it's been an incredible summer and you've been very busy, so we really appreciate you joining us. And good luck at the gym. Thank you. 	
rob	Thank you, Tanni. 	
Tanni	Thank you. 	
liz	And, Tony, so imminently what have we got coming up? 	
tony	Imminently coming up well it's the sort of closed season in the true sense of the Olympic and Paralympics the season is quietening down. But we do have swimming in Sheffield in November, it's the English Federation Disability Swimming Championships in, as I say, in Sheffield. All the British Paralympians that we saw at the games will be present, so that will be a great event. And Paralympics GB are also going to launch a sort of Festival of Paralympic Sport in December. We're waiting more details on that but I think basically they've been doing lots of talent initiatives which they did in the build-up to the Paralympics and this will be a chance to say, "Right, we haven't forgotten about it, we need to keep the momentum going and here's a load of key success stories from the Paralympics" and this is where you can join your local sports club and it's really important to stress it's right from grass roots level, because not everyone's going to be a Paralympian, but it's from grass roots level, get along to a pool. 	
rob	Really do feel the need to point that out to complete strangers on the street, just because I have a disability it doesn't mean I'm competent with a rugby ball or a javelin. 	
tony	Absolutely. 	
liz	But can I just say it's quite a useful game to play with people, because recently I was out with another wheel...	
rob	"What do you think I won gold in?" 	
liz	Exactly. 	
rob	"Can you guess?" 	
liz	Exactly. I was out with another wheelchair user and this complete random stranger comes up and just starts to patro--... "Oh you too little ladies no-one talks to you. I always make a habit of talking to people like you because no-one talks to you do they?" And I said, "But don't you recognise her?. Don't you recognise her?" He's going, "What?" I said, "She won gold." And he's like, "Really! Oh it's great. God love yer, God love yer." 	
rob	That's so cruel. But I love it. 	
liz	We're all Paralympians. 	
rob	Yeah we're all together. So we're having a festival now, a Paralympianbury. 	
tony	So I think there's still clearly a bit of work to be done patronising and improving the image, but I think just leave it I guess on a final bit - lots of great highlights and this is why sport is so good. 	
rob	Well thank you, Tony, and if you have a story on... Actually I should say thank you for the last, what, four years that you've been coming in and giving us all the Paralympic news...	
tony	It doesn't seem that long. 	
rob	...because we're at the end of the road now aren't we? But if you have a story on how the Paralympics has inspired you to keep fit, if you'd like to share a gym experience or have thoughts on the Paralympic legacy, you can email them to ouch@bbc.co.uk and we'll blog them or mention them next month. 	
liz	Thank you, Tony.
[Jingle: Ouch talking disability. I had years viewing my walk as I walked badly. Then I realised no this is the best I can walk, this is the best. And it really changed the way I felt and I kind of felt proud of myself. And the way I did things I went they’re not bad they’re the way I do it.
bbc.co.uk/ouch.]	
rob	Coming up... 
[Playing music]
That's En viihdy kotona - Pertti Kurikan , so sorry to any Finnish listeners, a learning disabled punk band. Hear the track in full at the end of the show. 	
liz	We have Jessica Thom with us. Hello Jess.	
jess	Hello. (biscuit)	
rob	Hello Jessica. 	
jess	Hello.	
liz	Now since 2010 Jess has been celebrating the humour and creativity of Tourette's Syndrome through her Touretteshero website where she says she plans to change the world one tic at a time. 	
jess	(And disco dance).	
rob	And Jess' new book 'Welcome to Biscuit Land' uses extracts from the blog and her artwork to document one year of her life living with the syndrome. It's even got a foreword by none other than Stephen Fry who has called it a 'charming, touching and valuable book.' 	
liz	Now we should explain some of Jess' tics contain strong language and her website includes a safe mode with if selected hides swearwords from view. Well this interview has been edited in accordance with BBC Guidelines. What the BBC may consider an editorial issue it really strikes at your everyday life though, Jess, so how do you feel about us editing out your more colourful tics?	
jess	(biscuit) Well it is editing out part of my disability (biscuit) and it's a part of my disability that (biscuit) is a small part (biscuit) for me swearing tics don't happen all the time. (biscuit) And for people with Tourette's only 10% of people with Tourette's swear. It's commonly associated with swearing (biscuit) but it affects a very small percentage of people (biscuit) (sand dunes) but I am one of them (biscuit), and so editing out my tics is editing out part of my disability. I'm very pleased the BBC doesn't have a (biscuit) no biscuit policy or we would be in big trouble. 	
rob	Just point this out next month, just to be fair, we are going to edit out Liz's wheelchair from the podcast. 	
jess	Yeah (biscuit).	
liz	But you...	
jess	(HELP!)	
liz	...have a safe mode on your website and is that for children? Is that because of the educational nature?	
jess	Yeah. I mean (biscuit) with Touretteshero as an organisation and with the website (biscuit) I think we realise (biscuit) we're treading quite a fine line (biscuit) (biscuit) between celebrating the humour and creative Tourette's (biscuit), engaging people who haven't got Tourette's or any interest (biscuit) in disability in a humorous way and challenging (biscuit) challenging misconceptions about the condition, (biscuit) but also wanting to provide a place where children and young people and people with Tourette's (biscuit) can get informal support. (biscuit) And I think that's why we have a safe mode which is somebody being able to turn off (biscuit) the sort of explicit content (biscuit) but not me (biscuit) censoring myself. (biscuit) And some of the (rummage!) ruder tics are also some of the funniest so I wouldn't want (happy birthday) wouldn't want to turn them off completely. (Santa!)	
rob	I love some of the tics. 	
jess	(Disco)	
rob	We were reading through a few of them beforehand and I do like...	
jess	(Normandy)	
rob	...what's the...	
jess	(Help)	
rob	...chastity belts for alien squirrels a particularly good one. 	
liz	This was this weekend I was on Facebook and I really liked that. I loved 'Happy make a kitchen out of sand day'.	
jess	(biscuit) Yeah that's a good one. 	
liz	It was a very beautiful one. And I actually wanted to ask you about that: if during this interview you say some of your tics and we just say, "Oh my God they're fascinating" or "We love them" can we stop and ask you about them, do you mind? 	
jess	(biscuit) Not at all. And laugh if they're funny. (biscuit) I think one of the things (biscuit) that was really important about Touretteshero was saying if I say something funny (biscuit) as a tic then please laugh at it. (biscuit) It feels unnatural if people don't (biscuit). (biscuit) But there's a big difference between laughing at someone because they move or do something in a different way (biscuit) and laughing because someone's talked about alien squirrels and chastity belts. (biscuit)	
liz	Which is...	
jess	(HELP!)	
rob	Does this really mean that alien squirrels and chastity belts are going through your mind all the time?	
jess	No. 	
rob	Is this just completely random word association or are they images which are coming to you? 	
jess	They're neither I think. Another misconception about Tourette's other than the swearing (biscuit) (hat) is that it's just people saying what they're thinking. (sand) (biscuit) I don't think about biscuits quite as much (biscuit) as I say them. 	
rob	Who could? Who could think about biscuits as much as you, it's impossible. 	
jess	And (biscuit) and they're not, most of the time, they're nothing to do with what I'm thinking about. (biscuit) Sometimes tics are environmentally triggered (biscuit) so if I'm at a cash point and I think: mustn't say my pin number, then I'll say my pin number ((edited)) (disco) - you might want to just edit that bit out - (biscuit) (biscuit) ((edited)) that's my real pin number. 	
rob	If I was you I'd have lots of different accounts with little amounts in each. Don't stockpile it all in one place. 	
jess	Basically I'm not very good at keeping secrets (biscuit) but I will tell people what they've got for Christmas and for birthdays (biscuit). But the actual...most tics (biscuit) I have no idea (biscuit) where they come from. Why biscuit? Like I don't think I could even (biscuit) begin to imagine why my strange neurology picks certain words (biscuit) over others. And it's not necessarily that I even am aware of them until they come out of my mouth (biscuit). And there have been times where I'll catch a tic halfway through (biscuit) and my friends will go, "Oh what was that one, that would have been a good one?" and I've no idea. I don't know what the ending would have been if I'd (biscuit) (Santa) if I hadn't have been able to catch it. 	
rob	Now I know Tourette's has a lot of media coverage going all the way back to John Davidson for much older Ouch listeners. The latest was a three part documentary fronted by Radio 1 DJ Reggie Yates about how people with Tourette's can suppress their tics when concentrating on singing. So how was that documentary with Reggie gone down in the Tourette's community, Jess? 	
jess	It's been really well received in the Tourette's community. I think lots of the people (biscuit) (sand) I think the people who took part were engaging and spoke really clearly and eloquently (biscuit) about their experiences. (biscuit) Obviously not everyone with Tourette's has incredible musical ability (biscuit) and my tics often react the opposite way (biscuit) and are over excited by (biscuit) music and songs and (biscuit) go bonkers. 	
rob	Anything in particular? 	
jess	Bonkers by Dizzee Rascal. 	
rob	Makes perfect sense. 	
jess	(biscuit)	
liz	Now there's a couple of things that we've talked about and you've gone, "Oh that's another myth about Tourette's" so okay so from your point of view what is Tourette's? 	
jess	Well the (biscuit) if you google it (biscuit) or look at the traditional support forums (biscuit) they'll tell you it's a neurological condition (biscuit) that means you make involuntary movements or noises. (biscuit) My sister (biscuit) is a doctor and she found the definition of Tourette's (biscuit) in one of her medical handbooks (biscuit) that was a definition of Tourette's that I recognise (biscuit). And it said that Tourette's was (biscuit) (Bees) irrepressible, explosive, (biscuit) occasionally obscene verbal ejaculations and gestures (biscuit) (sand). And it went on to say that there might be a witty, innovatory, phantasmagoric picture with mimicry antics (biscuit) and playfulness. And I was like "Okay I've got that." (biscuit) 	
liz	I've got that version.	
jess	That was what I recognised. (biscuit) And I think (biscuit) for a long time I hadn't felt able to talk about Tourette's (biscuit) or my tics without feeling upset and without (biscuit) you know finding it really difficult and it being a hard conversation. (biscuit) One of the things Touretteshero and thinking about the creativity and the humour (biscuit) has done is it's meant that I have not only felt more positive (biscuit) but developed a way of talking about it and a language that means that I can explain (biscuit) it to other people. And that's a much more positive impact on my life (biscuit) than any treatment or medication. 	
Rob	At the risk of embarrassing...	
jess	(sand) (HELP!)	
rob	...you, Jess, I should probably point out to listeners at this point that if you can hear a little banging sound it's not me and Liz being unprofessional it's Jess banging her chest which is one of the physical tics of Tourette's isn't it? 	
jess	Yeah (biscuit). I mean listeners will be able to hear (biscuit) all the biscuits but what they won't be able to see (biscuit) is the many involuntary movements that I make including banging my chest hundreds of times a day (biscuit). 	
rob	Does that not bruise? 	
jess	(biscuit) Funnily enough (biscuit) it used to bruise a long time ago (biscuit). My chest gave up bruising years ago (biscuit). But I wear the gloves (biscuit) because my knuckles are less hardy and they erode and bleed and crack (biscuit) and that gets messy. 	
liz	It must be really tiring physically but also dealing with people's reaction to you. 	
jess	Yeah I think (biscuit) I think I don't tire (biscuit) of talking to people (biscuit) who are interested in Tourette's (biscuit) and people who are curious (biscuit) in answering questions I don't...that doesn't bother me. (biscuit) I do get tired of not being listened to or giving an explanation (biscuit) and that's really frustrating. (biscuit) But... 	
rob	Should we apologise for the last ten minutes? 	
jess	No, no you've been doing alright so far. 	
rob	Okay. 	
jess	(sand) (biscuits) (HELP!) (I'm stuck down a well) Not technically true. (biscuit) 	
liz	It's okay listeners we are in a studio it's...	
jess	(disco)	
rob	They're may be a recession but we haven't relocated out to the bottom of a well... 	
jess	(disco)	
rob	...just yet. 	
jess	(disco)	
rob	Next month on the other hand. 	
liz	You've had Tourette's since you were a child is that right? 	
jess	(biscuit) Yeah the first tics that I (biscuit) that I can remember were when I was about six and that was squeaking (biscuit). (ha ha ha) But my tics as a child were less noticeable (biscuit). What was probably more noticeable was my slightly chaotic behaviour. I used to do sort of (biscuit) very impulsive things like run at closed doors and I used to jump up and down repetitively. (biscuit) So I clearly moved in a different way. (biscuit) But it wasn't until and I knew it wasn't until adulthood that I got a formal diagnosis of Tourette's. (biscuit) And for a long time I knew I had Tourette's but didn't feel that I needed a formal diagnosis (biscuit) but I was wrong because having a formal diagnosis (biscuit) helped me understand something that had always been a big part like (biscuit) my life and gave me the lang--...you know helped me find the language (biscuit) to explain it. (Santa!)	
rob	You go into school as your alter ego...	
jess	(Luck, lucky duck)	
rob	...Touretteshero. 	
jess	(biscuit)	
rob	Tell us a little bit about that?	
jess	(biscuit) Well Touretteshero is an organisation (biscuit) as well as a super hero, and the first (biscuit) fully fledged Tourette's super hero (biscuit). 	
rob	Thank God. We've been waiting for so long. 	
jess	(biscuit) Yeah. (biscuit) (biscuit) (Santa!) (duck donkeys) (biscuit) 	
rob	Sorry I can't help I'm laughing at that one, sorry. 	
jess	Santa or donkeys?	
rob	I just like the congruity of the two together. 	
jess	(Lucky ducks) 	
rob	Are you thinking of Santa on a donkey I am. 	
liz	I think you described, Jess, as a Kerouac earlier because we were...	
rob	I think it's surrealist poetry I'm thinking is a stream of consciousness kind of stuff, it reminds me of Sid Barrett lyrics. 	
jess	(Disco, disco, disco) Matthew who's the co-founder (biscuit) of Touretteshero described (biscuit) my Tourette's (biscuit) as a crazy language generating machine (biscuit). And that was one of the key moments (biscuit) for me in thinking about Tourette's differently. (biscuit)	
rob	It is it's like random noun generator, absolutely. 	
jess	(Santa!)	
rob	So Touretteshero...	
jess	(Rummage)	
rob	...what Touretteshero wear, a cape? 	
jess	A cape, mask you know (biscuit) the full super hero getup (biscuit) the idea of the organisation is to put on (biscuit) creative events for children and young people with Tourette's (biscuit) (biscuit) that concentrate on playfulness and positivity and creativity rather than the challenges of the condition. (biscuit) But Touretteshero as an organisation (biscuit) is for everyone with and without Tourettes. (biscuit) The idea is to engage as wide an audience as possible and draw them in to the world. (biscuit) 	
liz	I know you work with children and a lot of Touretteshero is about communicating with children who have it and children who don't. 	
jess	Yes. 	
liz	What about then the strong language?	
jess	I work full-time for a children's organisation in London (biscuit) and that involves (biscuit), my role involves running three children's projects. (biscuit) (Santa) (biscuit) Lots of people assume (biscuit) that because I have coprolalia and swearing tics (biscuit) that would be automatically incompatible with working with children and young people. (biscuit) I think completely the opposite. I think children and young people need to be (biscuit) in environments where difference is seen, supported and understood. (biscuit) And if that means the occasional swearword that they hear in the context of all my other tics (biscuit) and it's clearly not intended in a hurtful way, and that's explained clearly, I think any child who's old enough (biscuit) to recognise a swearword is old enough to recognise the difference between intentional swearing (biscuit) and tic swearing. It also sounds very different (biscuit) which is one of the reasons why I sort of think it's important that (biscuit) it's heard and broadcast (biscuit) and why I would like it not to be edited out (biscuit) of interviews, because people have an idea (fuck) (biscuit) of what they think swearing sounds like because they know what swearing with intent sounds like. When people meet me they're a bit, you know, or meet anyone with Tourette's (biscuit) they quickly realise that's not what it is (biscuit). But (Santa) (rummage) (bees) (biscuit) lost my train of thought there completely. I'm sure I was going to say something important. 	
rob	It's been really fantastic. Thank you so much for coming in. I really want to give you a chance to plug the book before you go, so tell me the publication dates etc. 	
jess	Publication date is this week. (biscuit) It's a 'Welcome to Biscuit Land: A Year in the Life (biscuit) of Touretteshero' and it's available from all good bookshops and online. Go and check it out. And the website and Twitter and Facebook and all that stuff. (biscuit)	
rob	And with a foreword by Stephen Fry. 	
jess	Yeah.	
liz	And it's Bridget Jones with tics. 	
jess	(Help!)	
rob	When you go to America then do you say cookies? And when you're in Italy do you say garibaldis?	
jess	(biscuit) That's quite funny because (biscuit) there (biscuit) has been some recent coverage in America and it's (biscuit) always prefaced with (biscuit) a description of what biscuit means in the UK as opposed to...	
rob	Before we turn over let's just do a few more of Jess'...	
jess	(HELP!)	
rob	...best non-sequiturs: 'The clouds are chasing Helen Mirren' was a good one. Liz have you got any more? 	
liz	I'm trying to get my bit of paper. 'I like dancing queen music, biscuit sheep, young and sweet only 73.'	
Jess	Only 78. 	
liz	73 originally, Jess. 	
jess	73. (donkeys).	
liz	And your comparisons sometimes apparently you do comparatives so we've got 'Variant CJD or beans - choose'. 	
jess	Choosing is big thing. I can go crazy with...	
liz	Is it? Is it like don't get me started. 	
jess	Don't get me started on (donkeys or ostrich - 0:38:20?)) choose)	
 liz	Sorry we started. That's the afternoon now. You are a creative genius and I'm glad that you made it on to the show at last. 	
jess	I'm glad you had me. 	
liz	Good luck with the book. 	
jess	Thank you very much. 	
liz	See you, Jess. 	
Rob	Thank you. 	
jess	Take care. (biscuit)
[Jingle: Ouch talking disability. 
The relaxation in here when the mics are off, what we say to one another, is still not broadcastable. I mean it isn't because of the fact that nobody would understand the shorthand language disabled people use and I love to see that get out there. bbc.co.uk/ouch.]	
rob	[Fanfare] Hiring an orchestra just for that - hardly seems worth the while does it? But anyway congratulations, you've made it to the end of the talk show and you know what that means! 	
liz	Yes after a short summer break the secret end of show club is back. 	
rob	It is. And last time we, I don't know why, but we asked you to email in with the subject 'We are the secret editors' telling us what you would like to hear on future shows. 	
liz	And Lewis Holt obliges he starts his email with an admission "I'm another one of those covert able-bodied listeners...	
rob	What? 	
liz	...sneaking in through the side door to listen in the shadows for fear of being spotted and thrown out of the Ouch podcast...	
rob	Get out! 	
liz	...club." We like Lewis because he flatters us outrageously...	
rob	Does he? 	
liz	...but then finishes - he did, even you - before finishing with an idea for us, yeah he works with IT systems in schools and he says "Something that I would like you to talk about or look at would be computer software/hardware in education because normally I just install it and I never get to find out if there's a better solution." He also wants to know are computers the bane of our lives or a godsend. If you talk to Emma, the producer, they're a godsend! 	
rob	And to me they're well, hm, they're sort of like socks - you get used to them after a while. You will wear them in then they're okay. 	
liz	I barely have a mobile phone, do you know what I mean? So I'm a luddite. 	
rob	Oh are you, you're one of those. 	
liz	Yeah. 	
rob	Do you still have a vinyl record player and a mangle? 	
liz	Pretty much there's nothing...	
rob	Do you still send faxes? 	
liz	Oh if I could I would! 	
rob	Would you? 	
liz	Yeah.	
rob	Someone asked to send me a fax the other day I was like, "What? Is it 1987?" I just on principle even I mean does the technology even exist, I mean it must do I suppose. 	
liz	I think you can but I think you do it via...	
rob	People don't have fax machines. 	
liz	I think you do it via your printer or I think you do it via your computer. 	
rob	Utterly, utterly pointless. Anyway, Jeff Carr - no relation...	
liz	No relation. 	
rob	...I presume - got in touch. He misses Mat Fraser. Huh! And Vegetable, Vegetable or Vegetable. Cheers Jeff!	
liz	That must make you feel heartened? 	
rob	Yeah why are you writing this to me, Jeff? But he's still kind enough to let us know that he enjoys listening to the show on the train in the knowledge that he's having fun while commuters around him are miserable. Are you a bit of a sadist, Jeff? Jeff would also like to talk about a very serious issue on future podcasts. He says, "I'd like to hear some challenging discussions about disability hate crime. Why do the police not seem to take it seriously? Why are so few prosecutions brought? Are disabled people not willing to be witnesses to the crimes against them? Are there some representatives from disability networks and the Criminal Justice System who could contribute to the discussions?" 	
liz	On the same wavelength as Tanni Grey-Thompson who brought that up earlier in the show. Well also thanks to Irene Rose, Boondie lady and music teacher, Vanessa Ransley, and her guide dog Elton, for taking the trouble to write in. And repeat emailer to the show, James Tween amongst others. 	
rob	So keep your ideas coming in and we will consider them all. Well me and Liz won't. But we're thinking that we might, and I do mean might, want to talk to some secret club members on the phone next month. So if you would like lifetime membership - it sounds like a prison sentence...	
liz	Yeah but for disabled people that could just be days I wouldn't worry. 	
rob	Yeah just staying in to our gang then email us with your phone number and tell us why we should talk to you. Drop us a line at ouch@bbc.co.uk putting the words 'Call Me' in the subject line and we could be phoning you up in early November. 	
liz	Call Me. Well that's your lot for...	
rob	Call me!	
liz	Thanks to Damon Rose and support workers, James and Sam. The studio manager was Phil Hutchinson, the producer was Emma Tracey. 	
rob	And we were very sad to hear that Heavy Load, the UK's learning disabled punk band, anarchists, lovers, fighters, troubadours... 	
liz	 Pogoers 	
rob	Pogoers yeah, fantastic donners of very strange headwear and leaders of the 'Stay Up Late' campaign are to split. Musical similarities. 	
liz	But loud music fans all is not lost. Playing us out this month is up and coming Finnish learning disabled punk band Pertti Kurikan. 	
rob	If you like what you hear look out for 'Punk Syndrome' a fly-on-the-wall documentary film made about the band which will be showing in a selection of UK cinemas during October. You can read more about the band and the film on our lovely, lovely blog at bbc.co.uk/ouch.	
liz	This a track they call En viihdy kotona translated into English that's 'I don't like to be at home'. 	
rob	See you next month. 	
liz	See yer! Goodbye. 
[Playing music]