Ouch Talk Show #87 May 2012
bbc.co.uk/ouch/podcast

Presented by Rob Fraser and Liz Carr 

liz	Thanks for downloading July's podcast from Ouch. We're the podcast that knows its disabled onions, yeah it's true and you won't hear that phrase said too often. 	
rob	And a very good thing too. On the show today - holidays how do you do it differently? We've been asking on our social media. We're joined by a mum with disabled kids and a go-getting power chair traveller they've both got great perspectives. 	
liz	With Paralympics just over a month away and most athletes finalised we'll be finding out how many of them are ex-military. 	
rob	The Paraorchestra has been making headlines lately, have you heard them yet? Well we're joined by trumpeter Clarence Addo and also conductor Charles Hazlewood, the man who got the elite disabled musicians together. 	
liz	And continuing the music we'll be playing out with autistic band, the Beethoven's.	
rob	So stayed tuned. 
[Jingle: From London it's Ouch disability talk from the BBC with Liz Carr and Rob Crossan.]
So Liz I've just found on my travels, from which I got back yesterday, a unique use for crude oil which benefits disabled people. Are you interested?	
liz	I'm intrigued. 	
rob	You should be intrigued. 	
liz	Go on. 	
rob	I've just come back from Azerbaijan.	
liz	Of course. 	
rob	Obviously - hosts of Eurovision this year. And they have a lot of oil, hence a lot of money. But they have some oil which doesn't burn. And so in this little town called Naftalan which is half way between Azerbaijan and Georgia, there's a little town with a sanatorium where people flock from all over the former Soviet Union to come here because you can take baths in crude oil and it's meant to be very, very good for people with skin diseases and also if you have arthritis or joint problems as well. 	
liz	And is it black?	
rob	Yes it is it's completely viscous slippery...	
liz	Like tarey - sic?	
rob	Tarey yeah and it's extraordinary stuff. And you're supposed to have a session a day for about a fortnight, and obviously I only had one and also I doubted that it would do much for visual impairment. I've never thought of crude oil curing albinism really. 	
liz	But you have got very pale skin...	
rob	Yes well not...	
liz	So it could have...	
rob	...after I'd stepped in the bath I didn't. I looked like a seagull after the deep water problem it was horrendous. And it didn't really do much for me I've got to say but it did give me the unique experience of having a short Turkish man scrape oil off my naked body with an oversized shoe horn before showering..	
liz	But not for the first time though I'm sure. 	
rob	...me down. Not for the first time. There's places in London you can have very equal experiences. 	
liz	You're always travelling but actually you travel for work.	
rob	Well yeah we were talking about this earlier. People think that my life is just one long holiday.	
liz	So look we know it's holiday time and we asked you on Twitter and Facebook to tell us about how you plan your accessible holidays. So I love this, Donna Louise Watch, "Taking a mountain of stuff only disabled peeps and their closest family would understand. Hours trawling the net for the right accommodation and checking specific access at places of interest. Then after all that I forgot the simplest of things - shoes!"	
rob	Shoes. 	
liz	Maybe you don't need them, I don't know, it depends what your impairment is. 	
rob	And Shannon Murray says, "Hours of research for wheelchair accessible hotels with roll-in showers, rooms are often more expensive as hotels insist on you taking a queen size" which is true, holidays are expensive...	
liz	They are. 	
rob	...if you've got needs. 	
liz	And if you've got added needs. Well look we've got two people on the line waiting to join us here, we've got Alexa Wilson and Martin Sibley, hello both of you. 	
alexa	Hello. 	
martin	Hello. 	
liz	Hello. Now thank you for joining us. Alexa is a mum of two disabled kids and you've got some interesting holiday challenges that we want to hear about in a sec. Martin you're a power chair user with a wonderlust, that's what it says here. 	
martin	If only. 	
liz	Yes absolutely, that's a phrase you don't hear often as well. Alexa tell us you've got two disabled children and so how do you all go on holiday as a family, what arrangements do you have to make? 	
alexa	Well both our children have Fragile X Syndrome which is an inherited learning disability which presents a bit like autism but not quite. So really it's huge amounts of planning. We have to start weeks in advance warning them that we are going to go on holiday that there's going to be a change in their routine. So we'd use, especially for our son Toby who's seven, a system of sort of visual prompts showing him pictures of the place that we're going to go. But he has very little concept of time so it's quite difficult really, and you have to strike a balance between giving them adequate warning that their routine is going to change and the possibility that if you tell them too soon they're going to be worrying about it for weeks.  	
rob	And does this mean then that you have to go back to the same place very year? Would going to a different place every year for your holiday just be too disruptive?	
alexa	It would be. We tend to find somewhere that we're happy with that's suitable and then we stick to it. It just makes life easier for everybody really because we're not anxious about where we're going because we know that it's safe for the children, there aren't any sensory issues, you know, for us going to a hotel would be very difficult. 	
liz	And so you make the plans. What's the journey like to get there once you've found this place?	
alexa	We're quite lucky in that the children both like being in the car. We do have to listen to the same music over and over again the entire way there. 	
rob	Please tell me it's something good? It's not 'It's a Small World After All' or something like that is it?	
alexa	No it's generally either George Michael or Etienne Baho who’s a French singer that they've taken a liking to. 	
rob	That's quite advanced for...	
alexa	It is!	
rob	...for a seven and an 11 year old I'm quite impressed.	
alexa	I know. For a seven year old who actually can't speak sentences in English he can sing in French. 	
liz	And is it the whole song and the whole album?	
alexa	No just one song. 	
liz	Oh okay.	
alexa	Yeah so about three and a half hours over to Wales.	
liz	Huh-ha, huh-ha. So they're calm by the time you get there, how's mum and dad at this point?	
alexa	Well we tend to take two cars actually just because it gives us a degree of flexibility when we're there because there are some activities that Toby can access that Ellie can't and vice versa.	
rob	Like what?	
alexa	For example there's a swimming pool that Toby loves to go to, it has a wave machine and like a little river that goes outside that you slope round on, and he absolutely loves it. Ellie is terrified by it because when the wave machine is going to come on a claxton sounds and she can't cope with the claxton, it terrified her the first time she heard it and she literally bolted out of the building in her swimming costume screaming. So if Toby wants to go to that place which he loves we can't take Ellie, so it's easier if we have two cars I go and do something that she can do and Mark, my husband, will take Toby there. 	
rob	Now I'm speaking as a non parent here, so you have to forgive me if this question sounds slightly crude, but is it really worth the hassle, I mean it sounds like an extraordinary strain on you and your husband? 	
alexa	Yes it is. I mean I think it's good for all of us to get away, to be somewhere different. The cottage that we go to now I think this visit coming up will be our 14th visit. The children now are very relaxed there, it's got a safe garden for them to play in that's enclosed that we can lock the gate so we know that they're not going to wander. But also we've now found in that area by...I mean we always had to do a recce first before we take them anywhere to make sure it's going to be suitable, but we've found now a whole selection of activities that we can do, so it's manageable really. 	
liz	So Martin as a power chair user we've heard about Alexa planning for holidays, what are the particular challenges that you face? 	
martin	Yeah I suppose as sort of a person with a personality I like change and I like adventure and new things, so obviously hearing what Alexa says for me there's not planning in terms for me to get used to those aspects. But in a different way there's a lot of planning needed. I have a mechanical and physical disability called Spinal Muscular Atrophy. I have to go everywhere in my electric wheelchair, I have to have personal assistants with me 24/7 to hoist and help me shower and help me turn over in the night time, transporting the wheelchair and bringing an entourage of PAs has its own difficulties. 	
rob	Well can you actually... Isn't that frightfully expensive to bring a PA with you on holiday, wouldn't it be easier for you just to bring a friend or a partner? 	
martin	Yeah I mean it comes back to that thing about it being independent doesn't it? So there's been certain things I've done, certainly in the last year, where it just wouldn't have been practical to bring a friend or a family member because I've been travelling for longer spells as well. Equally I'm not at all well off or rich so I can't, and haven't been able to fund the PAs. But I have my personal budget so I'm still able to sort of pay the wage of my PAs and then they're sort of just trying to find compromise with them and maybe through if it's a work trip as well, ways of funding the actual expenses of the PA travelling. 	
liz	And so you're personal budget for people that aren't aware, that's like money from your social services to help for the assistance that you need in your life? 	
martin	Yeah and that's...	
liz	So you're sort of a flexible...	
martin	...is for your...the care to be carried out not for obviously going on trips away. 	
liz	Sure. But if you need a hand to go to the loo at home then you presumably need a hand when you go abroad don't you? 	
martin	Exactly. And I think in terms of the going if it's a one week abroad there's often a compromise you can come to where you're able to pay the person the budget for that week to do the care and maybe they still have to fund some of their cost of the flight, but they're going to get a trip abroad for a week. 	
liz	Okay so you're kind of creative about it, a bit flexible about it?	
martin	Yeah exactly. 	
rob	So give us some advice then, Martin, I've got a list here of the places you've been to: California, New York, Mexico, Australia, Austria, Germany, France, Singapore - you want to do South America or Asia, you're doing a road trip around Europe in September. Is there any destination in particular which you would say has exceptional qualities in terms of disability access and conversely anywhere where you found it to be all but impossible? 	
martin	Yeah I mean the more developed a country is economically and politically the better it is. So certainly the UK, Australia and America, as in the USA, were all very, very good on the kind of physical environment. But then you just have another side where in the sort of Western culture we're a little bit more individualistic and people have their head down and are a bit less aware of things like disability. Whereas I think if you go to a more developing country the infrastructure is rubbish but a friend of mine has been to India many times and the people I think are a little bit more willing to try and help your stay and your visit to be a success. 	
liz	So it's not actually inevitable that the more developed somewhere that you go the better service you get.	
martin 	No. 	
liz	It's just different in a way. You mentioned that you use a hoist for transferring between bed and chair and things like that. Do you take one with you or do you find hotels with them, how does that work? 	
martin	Again it varies, when we did a road trip around California I went with a friend who also has SMA and we took a portable hoist on the plane with us. There was a whole load of sort of procedures that eventually you get your head round with practise about getting the wheelchair on the plane and maybe the hoist all other equipment on the plane. So because we were on the move it was easier to have our own hoist. But other times I just locate through the internet a service provider and hire the hoist as well. 	
liz	What I want to ask you Alexa is, is there anything that a travel agent could do, a mainstream travel agent to help with your particular holiday hassles or organisational problems? 	
alexa	I don't think really. I mean we tend to well what we've certainly done since the children have been older is to book a cottage, and we use quite small agencies who tend to be better informed and will know the properties in detail, rather than some of the great big ones that rent out various houses, they're all a bit vague because they've never actually visited those houses. And they might say, "Oh no a garden's secure" and what have you and you turn up there and there's a pond in it or something like that which would be disastrous for our children in particular. So really hotels and flying and things like that are simply not possible for us. 	
liz	And Rob's asked you earlier he said, "Look is it worth it" you clearly feel that absolutely you've got a right to go on holiday, you want to, as a family, go on holiday so there's other disabled people I'm sure and families listening to this going, "Oh God where do I begin?" What would you, you know, what kind of tips could you give?	
alexa	Well other than find somewhere that you like and stick with it which we've done, I think going to self catering for us has given us the flexibility that we need. Our children could not cope with a hotel, there simply isn't, especially for Toby, the amount of stuff that could entertain him through the day. So I think that self catering and using a smaller agency who actually know every house that they've got on their book and have sort of firsthand experience of is what we've found most useful. 	
rob	And Martin do you think you could handle going back to the same place 14 times? 	
martin	As I said I do like change so it would be a difficult one. But equally I can appreciate what Alexa's saying that once she knows somewhere works there is a lot of comfort in that and every time I do go somewhere new I am risking that there's going to be steps or inaccessible showers and therefore not having a very pleasant stay as you would hope you would have. 	
rob	And how are you anticipating conditions to be for you when you go to South America then? 	
martin	Tricky. 	
liz	But you're ready for that? 	
martin	Yeah. I think my biggest advice would be start simple, take it slow, leave plenty of time to cost up and budget and if it takes a bit longer it's still worthwhile having that break in the end. But also building up, so starting simple and then over time maybe if it's appropriate going that little bit further the next time and the next time. Don't feel you've got to take the big leap straight away. 	
rob	Well I notice that neither of you have got Azerbaijan in your plans for your travels in the near future.	
martin	No 	
rob	But I wish you both well with your holidays this year and happy travels to both of you. Thank you. 	
liz	Alexa, Martin, thank you. 	
alexa	Thank you.	
liz	And thank you everyone that contributed all the tweets and the Facebook thanks for talking to us. If you've got any ideas email them to ouch@bbc.co.uk and we'll blog them or mention them next month. 
[Jingle: Ouch talking disability.
Rob: 	Do you think your depression would have taken a 	different form if you weren’t someone in the public 	eye? 
Ruby:	You’ve got to stop saying stuff like this you really do.
Rob:	Why?
Ruby:	Because people don’t hang themselves because they 	had a TV show on BBC4, this is really feeding the 	stigma. This is like laughing at somebody with cancer 	and saying, “Come on do some Scottish dancing.” 
bbc.co.uk/ouch. When Liz and Rob aren't here our blog is, find it at bbc.co.uk/ouch. Now back to the show.]	
rob	And coming up...
[Playing music]
Yeah that's Me, Myself and I by Beethoven an autistic or indeed possibly the autastic band from The Wirral. 	
liz	Yea! 	
rob	Ah The Wirral. Hear it in full at the end of the show today. 	
liz	Ah my old stomping ground where I grew up. I know you don't care because now it's over to our Paralympic's man, Tony Garrett, not in the studio with us today but where are you Tony?	
TOny	Hello there. I'm in the very wet and windy Stadskanaal Stadium which is about 200 miles north of Amsterdam at the European Paralympic Athletics Championships. 	
rob	It's a pleasure to talk to you Tony. Sorry. We're going to talk about former armed forces personnel taking part in the Paralympics shortly. But first things first lots have happened in disability sport over the last month, Tony, so let's start with the Paralympic World Cup at the end of May how did the GB basketball team get on over there?	
tony	Yeah everyone had a good week in Manchester it very much was Paralympic week with basketball and athletes and it was all very exciting. The basketball teams though didn't do very well really, both the men's' and women's' teams had disappointing results that week. 	
rob	Oh dear. 	
tony	But it was very much final practise there's lot of matches and training to go before the games, but they would have hoped for better but I'm sure they'll have their act together come the Paralympics. 	
rob 	Holding back their best form for when it really matters I hope. 	
tony	We certainly hope so. 	
rob	And there are still, we're so close now, and there's still athletes who don't know if they're going to the Paralympics or not. But some more of the GB teams I think have been finalised haven't they recently? 	
tony	They have indeed. We really are getting down to the business send shall we say. We've had wheelchair tennis, sitting volleyball, track cycling and rowing all selected and that really only leaves a few squads including athletics and equestrian to be finalised. So it's very exciting times in the Paralympic world as we get nearer to the games. 	
liz	Well this month we're going to focus on sport and injured ex-servicemen and women. Derek Derenalagi was seriously injured while on duty in Helmand Province in Afghanistan. He's now an athletics hopeful for the forthcoming games. Tell us a bit more Tony? 	
tony	Yeah Derek's a fascinating guy he really is. I caught up with him recently at the Paralympic World Cup and he told us his story. 
[Playing clip:
Derek: Well my name is Derek Derenalagi originally from Fiji but I've been in the country for over 12 years. And I'm in the military still a serving soldier with the 2nd Battalion, The Mercian Regiment which is based in the Palace Barracks in Belfast. 

Tony:	We want to talk about today we're here at the Paralympic World Cup in Manchester but just take us back a little bit what happened to yourself and obviously also I want to talk about Help for Heroes because that's obviously a particularly relevant association and charity, just take us a little bit back a few years please.

Derek: Well it way back in 2007 when I was serving with my regiment. Normal routine patrol on a Thursday morning to clear a helicopter landing site. And after clearing the HLS we went up to this high ground that's when we'd been hit by an anti-tank mine and that took the vehicle completely out, destroyed the vehicle and I got thrown for nearly 30 metres. In the incident I lost both of my legs above the knee and I suffered multiple injuries as well. And the thing was I was pronounced dead in Camp Bastion when they brought me back to the field hospital. And it was just when a miracle, one of the medical staff at Camp Bastion field hospital was preparing my body to be put in a body bag that's when he found out that I had pulse. That's when they changed all the plans to bring me back to Selly Oak which is now the Queen Elizabeth Hospital in Birmingham. 

Tony: You've made a remarkable recovery from there. Obviously you got involved with Help for Heroes and obviously you've then realised actually as you were recovering when did you feel that some athletics or Paralympic sport was it athletics to start with could be something that you would be keen to pursue? 

Derek: Well yes. My involvement with athletics started after my injury, after Afghanistan. And it started off with watching the Beijing Olympic and Paralympics. And then soon after that Help for Heros and the military, they put this programme together to take injured soldiers to try Paralympic sports in America way back in 2008, in October. And I was one of the soldiers that went into the trip. As soon as we came back it just changed my mind completely and I just said to my wife, "This will be my career when I leave the military." And I've been loving it ever since I've started athletics. 

Tony: Tell us which events you're hoping to qualify for the Paralympic in? 

Derek: I'm hoping to qualify for the discus because discus is my main event. I've tried all three events javelin, shot putting, discus but I am potentially representing the country in discus. 

Tony: Derek, thank you very much for your time. Let's hope you get selected for the athletics team for the Paralympics. 

Derek: Thank you very much. Thanks a lot and God bless. 
	
rob	That was our Tony talking to Derek Derenalagi and always good to hear an interview with absolutely no ambient noise whatsoever I think. Now then joining us on the line from Nottingham is Penny Briscoe, Director of Performance at the British Paralympic Association. Hello Penny. 	
penny	Hey, how're you doing? 	
rob	Hello. I'm very well thank you. And we'll come back to you in a second because we also have, live on the line from Annapolis, Maryland USA Martin Colclough, hello Martin. 	
Martin	Hello. 	
rob	Hello. So you're involved in the Battle Back programme. Can you tell us very simply what exactly that is? 	
martin	The Battle Back programme is a sports rehabilitation programme that started back in 2008 to enable wounded and injured and sick servicemen to re-engage with sport as part of their recovery. And it really is as simple and straightforward as that. 	
rob	And what kind of events and training or programmes or what activities what exactly give me a few examples of what you've been involved in?	
martin	Well the programme falls into sort of two parts; we do a lot of outdoor education, outdoor adventurous activities because the military has always done that sort of stuff. And the programme started with a ski expedition in 2008 in the spring of that year. And all the way through to the Paralympic sports. And we used the Paralympic sports as a vehicle for recovery because they are the most developed disability sports in the UK and they're the ones that the guys really take to very quickly, both the individual sports and the team sports. 	
rob	And I'm presuming this isn't just people...soldiers who come back from active service with physical injuries, you're also dealing with people with psychological issues as well? 	
martin	Yeah that's correct. So the programme's open to wounded, those who've been injured on the front line, injured, those who've been injured in training incidents and even catastrophic or serious sports injuries, road traffic accidents and the like, and those who have illnesses, so the post traumatic stress disorder would fall into that group. But we also work with soldiers and servicemen who have conditions like MS and other serious life changing injuries. 	
rob	So Penny, obviously sport helps rehabilitate ex-military personnel but I'm keen to know if they bring a different dimension or attitude to their sport. What are they bringing in particular to the Paralympics? 	
Penny	I think from our perspective I mean our relationship with, and certainly with Martin, goes back into the Beijing cycle and both with Battle Back and obviously a new relationship with Help for Heroes is it is about creating opportunity in the first instance to provide opportunities for injured, wounded, ill service personnel and vets to find that light at the end of that tunnel. And I think from my perspective clearly you're dealing with a population that potentially have been very fit before their illness or injury. They've come through physical therapy and rehabilitation and that sport is part of, for some, and only for some, almost a natural next step to move forwards from just the rehabilitation side of things to serious steps into sport. 	
liz	So is their involvement do you think a huge benefit for the Paralympics? 	
penny	I mean potentially yes in terms of the Paralympic team going into London only one or two percent will be serving or vets so the numbers at this stage are quite small. But we also know the wars are still going on and the numbers of returning service personnel with illness and injury is quite significant. So potentially for Sochi in Rio those numbers may increase. 	
liz	So Penny was the comedian Jimmy Carr right, now we tried to get him for comment but obviously he's a bit busy at the moment, but in 2000 and I think it was back in 2009 he made a joke about soldiers who'd lost limbs in Iraq and Afghanistan the punch line to the joke was 'we're going to have a good Paralympic team in 2012' - was he right? 	
penny	I mean we'll have a fantastic Paralympic team in 2012 and a number of those will be serving or vets. So as I said previously that is a small number and clearly the comment that was made by Jimmy Carr probably the context at that time probably wasn't the most appropriate. So from my perspective where the talent comes from is only part of the landscape and clearly it's about the choices that injured and ill service personnel make as to whether they want to go down a participation route or whether they want to go the whole hog and potentially pull on a GB tracksuit. 	
rob	So Tony just let me know which other ex-military people we're likely to see in the GB squad at the Games and in what events? 	
tony	Yes well Penny I'm sure will add to it as well, but I mean I think hopefully we will have some people in track cycling and rowing are the other sports that will be coming through. And I think they've all been going very hard and as I say track cycling, rowing, athletics I think are the three squads and of course, I do apologise, sitting volleyball which was announced last week where we've got a Welsh lass for sitting volleyball. I think it's been very good. Any others Penny?	
Penny	Yeah I mean in terms of the sitting volleyball squad and Martin as well may contribute here, we've got Sam Bowen in the women's squad. We've got Netra Rana in the men's squad. And also Charlie Walker who is also on the men's squad. So those were the first I guess of the athletes of the sort of current tranche of Battle Backers that have been accepted as team members. 	
liz	And so how many is that? 	
tony	About five, I'd say no more than six I think so I think we're saying about five to six athletes that's correct, Penny, I think isn't it? 	
penny	Yeah. I mean it depends how far we track back, Martin, isn't it in terms of there are one or two others who are ex-service personnel that will be in the team. 	
liz	But is, you know I just wanted to ask Martin before we have to go, is Paralympic sport universally popular amongst disabled ex-service people, are there other options for people on other schemes and programmes that they can get involved with? 	
martin	Yeah Paralympic sport is very popular but as Penny's mentioned people want to engage at different levels and that might be at a recreational level so that you can just get some skill back to go and kick a ball in the back yard with your kids post injury. So the recreational side is just as important and the outcomes from that are just as important as those who want to take on the challenge of pulling that GB vest on. You know the whole area of physical development and sport is open to these guys and girls. 	
liz	And it's not all about putting on the tracksuit and going for gold. 	
martin	And it's not all about the tracksuit no. That's a lovely side benefit of it. 	
liz	Well I guess those elasticated waists can be comfortable for us can't they? Thank you Martin, thank you so much for joining us. 	
rob	Let me take it from here, you've done enough for today, have a rest. The Paralympic opening ceremony is on August 29th and there's the small matter of the Olympics before then. So what's happening in the interim, Tony? 	
tony	Interim we've got finally coming up we've got some Wimbledon we've got the wheelchair doubles event that will be taking place at Wimbledon in the second week of that. But that should be a really exciting tournament a great opportunity for some of our youngsters to get some practise on a surface they won't be playing at at the Paralympics but that that'll be great. And I think really now it's down to the final tuning wherever you look the squads are off in the America or Canada or around Europe getting their final bits of practise. And then we've got teams sort of squad selections where, not squad selections, where the teams will be getting their kit in London and final sort of training camps down in Bath. So it's all sort of 50...July 10th is 50 days to the start of the Paralympics so put that in your diaries and then the games can begin. 	
rob	Tony you are as ever our sublime para fella, so thank you so much. 	
liz	Thank you for joining us. 	
rob	And get your brolly up because it's wet over there I know. 	
tony	Will do. Cheers guys. 
[Jingle: Ouch talking disability. I actually think that we do actually have an identity. I feel considerably more in common with the disabled people I work with and I’ve represented over the years than the non-disabled people I now work with. I feel alienated from them. I think they know nothing about me really. They know nothing about my life.
bbc.co.uk/ouch. Learn more about the people featured on this month's show on our blog. Go to bbc.co.uk/ouch.]	
rob	Now you may have heard a little about the amazing Paraorchestra which has been in the news rather a lot recently, and we're rather lucky to be joined on the line from Newcastle by one of the musicians in the orchestra, Clarence Adoo, hello Clarence. 	
clarence	Hello. Hi, hi. 	
rob	Very nice to be chatting to you. And can you tell me a little bit about what you play and whether there's anything particularly unique about it? 	
clarence	Yeah it's the only one in the world. What it is really if you were looking at it you'd see a laptop computer and it's got especially designed software in it for me, I'm paralysed from the neck downwards so the only movement I have is with my head. So I wear a headset and when I move my head left and right and up and down it's picked up by some sensors and that means that I can choose keyboards and different sounds and things to activate. 	
liz	And what do we call this instrument? 	
clarence	It's called Headspace. 	
liz	And it was designed bespoke for you? 	
clarence	Yes by a Canadian gentlemen who lives in this country now, Rolf Gehlhaar.	
rob	And so the Paraorchestra is full of people like yourself who have physical disabilities and have had instruments especially made for them or are there people just playing conventional instruments as well? 	
clarence	Most of the people are playing conventional instruments. They might have small adaptions to it but you know they have found ways round things, or there may be something small that they can't do but still can play 95% of the instrument very, very well. 	
rob	Is there anyone that can play the piano with their feet? 	
clarence	Not to my knowledge. 	
rob	We live in hope, one day.	
clarence	We do have a one armed pianist who is amazing.	
liz	Who we've had on the podcast absolutely. Now you were established by Charles Hazlewood, the conductor, and we're going to speak to him in a minute, but is it a full orchestra? 	
clarence	The orchestra is currently I think 15 strong, although Charles may have an update on that in the last fortnight or so. And so my job with my instrument I find is filling in some of the gaps if we were trying to copy a certain style or piece of music and we needed some rhythm or base or whatever chords and different things, that's something that I can do that the conventional instruments can't do. 	
rob	I think we've got a clip of the Headspace and how it sounds and I'm just wondering if maybe we can play that now. 
[Playing music]
Ooh it sounds quite Turkish do you not think? 	
clarence	Yeah the sound that I was using there was a soprano saxophone actually. And I was making it loop round and round so I was doing that by interrupting with my breath and my mouth technique that I've developed.	
rob	So is the circular breathing thing like you do for the didgeridoo?	
clarence	Yeah it can be, yeah it can be done with circular breathing and so yeah it's just another one of those facilities it can do. 	
liz	So it moves by your breath. So what if you sneeze?	
clarence	That's right you can't cough. And the other thing is because I'm controlling the screen with my head movement what I can't do is turn my head really to see other musicians in the group, I need to be...	
rob	Or see if they've even turned up. 	
clarence	Well that's right. I need to be strategically placed so that the only think I move is my eyes. 	
liz	Because otherwise you'd be filling in for a lot of instruments. 	
clarence	Absolutely. 	
liz	Where has everyone gone? Now what really interests me, Clarence, is and we haven't mentioned this I don't think yet, that you haven't always been a disabled person.	
clarence	No that's right. 	
liz	You've been disabled since 1995 I understand. 	
clarence	Yes that's right. Up to that point I was a professional trumpet player predominantly playing classical music, had a job with the Northern Sinfonia up here in Newcastle. Apart from that I was also doing other things like playing in West End shows and doing sessions and different things that came along from time to time. 	
liz	So a professional musician basically. 	
clarence	Yes. 	
liz	And once you became disabled did your opportunities...could you not play that instrument anymore? 	
clarence	Well no that's right being paralysed from the neck downwards means that I don't have a very strong puff. I cannot use my stomach muscles to push enough air through a trumpet and of course holding the trumpet and moving the fingers is a thing that I can't do. 	
rob	Charles is on the line, Charles Hazlehurst, the founder of the British Paraorchestra, hello Charles.	
charles	Hello, good afternoon.	
liz	That's Charles Hazlewood. 	
rob	Hazlewood, I do beg your pardon. 	
charles	It's alright. 	
rob	Now I'm very curious your debut performance is going to be on July 1st in the Orchestra in a Field Festival in Glastonbury is that correct?	
charles	That's absolutely right yes. 	
rob	Now with all the access requirements for the Paraorchestra is having your debut in a potentially muddy field really a good idea? 	
charles	That's a good question to ask. Actually it's not really a field at all, it's 32 acres of beautiful parkland basically around the ruins of Glastonbury Abbey. So actually it's a beautifully flat site with lots of paths and really no great kind of clumps or earth or anything like that that you might find in a real field. 	
rob	I thought you were going to say the ruins of last year's Glastonbury Festival in which case my wellies are still there, if you can dig them out that'll be fantastic. 	
charles	I'll have a look for you. 	
liz	We were just worried that Clarence's wheelchair, you know, instrument the whole thing would it have all the electrical points required, but it sounds okay. 	
charles	Oh yes I'd say we're fit for work there. 	
rob	Are there any instruments where you're struggling to find disabled players?	
charles	No not at all because the nature of the British Paraorchestra really is it's a fantastically kind of eclectic mix of different instruments, it's not a conventional orchestra in any way, shape or form. So whilst we have got some musicians who play stringed instruments, some musicians who play woodwind, some who play brass, we've also got a number of other instruments like Clarence playing instruments which are digital and so can basically do anything. So actually with 18 musicians at full strength now it's a fantastic mix of things. You've got the baroque recorder and baroque lute, but you've also got a sitar player, you've got a double bass producer - all sorts of different musical worlds coming together. 	
rob 	And how on earth do you agree on what material you're going to play? 	
charles 	Well the way it works is we basically agree on a theme or a framework or a kind of a structure at the beginning of the rehearsal and then we kind of all dive in and basically improvise. We're all sort of like wet clay really, developing the material from the ground up, until eventually through a kind of slow process of distillation it arrives at a piece of musical narrative we're all comfortable with. At that point we agree that's the piece. And so at that point it becomes fixed. And the joy of it is that when these musicians hit the stage you're hearing music which is genuinely jointly owned by every single one of them. 	
liz	So, Charles, what was the inspiration behind setting up the Paraorchestra, why did you do it? 	
charles	Well essentially I've got four kids and my youngest child, my daughter, was born just six years ago with cerebral palsy. So aside from just being a beautiful human being - I mean what dad would not say that about their daughter - she's given me, well she's basically introduced me to the whole community of disabled people which I had never really thought much about disability before. And I found myself looking at the Paralympics and thinking what an amazing model that was so there can't any longer be an intelligent person on the planet who doesn't believe in the absolute value of Paralympian sport. So as a musician I'm thinking well, you know, sport's pretty universal, music is much more universal actually so where are the platforms for brilliantly gifted musicians who happen to be disabled. And when I think of my own career I've been conducting internationally for 20 years now orchestras right across the world and I can think of actually three musicians with disability I've encountered in any of those orchestras at any point in the last 20 years. 	
liz	Out of hundreds and hundreds presumably of musicians you've worked with?	
charles	Oh thousands. And it's not to say that there's a sign on the door of each orchestra saying, "Disabled musicians are not welcome here" it's just that the attention of the world has not been on this issue. So as a result of that there hasn't been training, infrastructure, funding, uplift and so that's what we would at the British Paraorchestra want to bring about immediate change with. 	
liz	And Clarence there are a lot of disabled musicians out there do you think? 	
clarence	Well I'm amazed at who is around and the ability of people actually. So I'm discovering this for myself. 	
liz	Well it is very refreshing because often when we talk about music and there's a disability connection it's often in the realms of therapy, music as therapy. 	
rob	It's not something you'd want to listen to. 	
liz	Yes well...	
rob	It's a participatory thing. 	
liz	It has a particular function doesn't it? It's often rehabilitative. 	
charles	I think you're absolutely right and I think it's something which we are very clearly not about at all. I mean I think there is an assumption people make that when people with disability involve themselves in a project that very often it is therapeutic, it's about the taking part, it's about the good kind of experience, as it were, for all the participants. Whereas in fact the only thing we're interested in with the British Paraorchestra is in making music of world class quality. So in a way it's at that point, at the point of sale if I could put it like that, at the actual performance, it's nothing to do with disability at all, it's just to do with the highest levels of music making. 	
rob	And what's your ultimate ambition then for the Paraorchestra Charles?	
charles	My ultimate ambition for the Paraorchestra and the simple reason we've called it the British Paraorchestra is I want to start a global movement I want to see Paraorchestras start to crop up in all sorts of countries right across the world. I want to see disability no longer being any bar to making music at the highest level with the end gain that people will come through these orchestras and then find themselves playing in some of the leading other orchestra ensembles, bands whatever you name it right across the world, that's what we need to see change. 	
liz	Well Charles thank you so much for joining us, we wish you well. 	
charles	Thank you so much.	
liz	...with your wonderful ambitions for the Paraorchestra. 	
rob	And, Clarence, are you still there? 	
clarence	Yes. 	
rob	Do you think you're a better player now? Are you more technically accomplished? 	
clarence	Yeah well the interesting thing about my role in the Paraorchestra is that before I used to play music that was put in front of me and so no memory or anything like that was needed or what keys we were talking about. And so now I have to have good memory recall, I'm listening to all the instruments in the orchestra to see where I fit in and balance a lot more than just sitting there and doing my part following the instructions that were on a piece of paper in front of me. 	
rob	It's very refreshing to talk to you, Clarence, thank you so much.	
clarence	Good. Thank you. 	
liz	And very best of luck with your first performances. 	
clarence	Yeah I look forward to it. 	
rob	And you can see Clarence on Friday 6th July at the City of London Festival. And now... [Playing fanfare music] In no sense bombastic or overdrawn at all, we're at the end of the podcast. Now hang on, can we actually have that again? I just liked it a bit much, it made me feel important. One more time please. Oh don't bother then. Right anyway we're at the end of the podcast. Last month we wondered how many people listened this far it being a podcast that you can switch off and frankly not come back to ever for the rest of your short and miserable life. We urged you to email us if you've reached the end and we were still listening to you, or you were still listening to us even! And we've had loads and loads of 'I'm still listening' emails haven't we, Liz, Elizabeth?	
liz	Loads. 	
rob	Yes Maureen Harrington says, "Of course I listen to the end what else would such a compulsive person do? Love Ouch all of it but especially your show." 	
liz	And it's not just people in the UK, Richard Goodrow in Chicago emails to say he was still listening at the end, thank you very much. As did Liam O'Carroll and also Robert Herbert. 	
rob	Sean Chiltwood says, "Not only am I listening I'm pimping your show to all my friends" which sounds a little distasteful but appreciate the sentiment. And Will Samuels says, "I always listen right to the end. I'm not disabled in any way and I don't have any contact with disabled people or their carers." It sounds like you're deliberately avoiding us, Will. "I'm just trying to broaden my horizons" well good for you. "and learn about a community that I very rarely hear anything about in the mainstream media." Sean from Auckland, "I do listen all the way to the end of the podcast, I'm able-bodied" another one, "but do not know many impaired people so the podcast is a great way to gain an insight into the thoughts and issues of disabled people. Keep up the good work." 	
liz	Do you see this is starting a trend. Ann Connell from Portland Oregan says she's still listening and has been listening since episode one. She says, "And I'm afraid I'm not disabled" But when did we say that you lot weren't allowed to listen? You are, you could be one of us any time. 	
rob	It could happen. You're only one missed traffic light away really. And finally, Mary Anne has emailed us, don't know where you're from Mary Anne "I happened upon your June podcast" she says "whilst browsing the Radio 4 podcast page for things to listen to while doing a long run yesterday. At the end you said anyone still listening should write in, so here I am. As well as being hugely entertaining I will definitely listen to the next episode, I learnt a lot - the exam and cure for disability topics on the last show were particularly interesting. The Fish Water song at the end put off my pace a little bit but it did give me a well needed boost at mile 19." Thank you for shoehorning about 50 references into you being an able-bodied there Mary Anne...	
liz	Yeah thanks for that.	
rob	...we appreciate it. A little smug though, a little smug. 	
liz	Yeah a little bit cruel there. Here's what you would have won. Please email back though we need lots of inspiration and we need to know that you're out there. If you have listened this far then you're very special, disabled or not. 	
rob	So special. 	
liz	And if you want to be part of the end of show club and have your email read out then the email with the secret subject line 'Only we know about the club' that's 'Only we know about the club' - we can't wait to hear from you ouch@bbc.co.uk is the address. 	
rob	And that's the end of the show for really, really real now. So thank you to Emma Tracey, Vaughan Simons and the studio manager, Martin Appleby. The producer, as always, was Damon Rose.	
liz	Playing out this month then as advertising, is autistic band the Beethoven's. See them live at the Disability and Deaf Arts Festival DaDaFest in Liverpool on July 12 and find out more about them on our blog at bbc.co.uk/ouch. This is Me, Myself and I. 	
Liz and Rob	Goodbye.
[Playing music]