Ouch Talk Show #86 May 2012
bbc.co.uk/ouch/podcast

Presented by Rob Fraser and Liz Carr 

ROB	Thank you for downloading Ouch the disability programme that tries not to be a disability programme, if that makes any sense? This is addition 86 for June 2012 and this month we’ve surpassed ourselves when it comes to guests, Liz will tell you more. 	
liz	Indeed I will. We’ve got Becky from Glee, very excited about that. Probably the most well known actress with Down Syndrome in the world right now, a regular on the high school super show. And don’t despair, talking of school we’re getting your memories of those difficult exam times plus how it all works now. 	
ROB	In about 15 minutes or so Sir Philip Craven, President of the Paralympic Movement will be here to talk about the games which are now less than 100 days away. And retina implants, paralysis busting nerve surgery, diabetes gene therapy, exoskeleton suits - all these have been in the news recently so our big question later is: have we nearly cured disability? 	
liz	Well I hope not, I’d have no career. Anyway as we end...	
ROB	That is true. 	
liz	...with a track from Fish Police, the fantastic learning disability band from London, so push those headphones in a little bit closer to your eardrums and keep listening. 
[Jingle: From the London it’s Ouch disability talk from the BBC with Liz Carr and Rob Crossan.]	
ROB	So, Liz, we can cross genies off the list for discussion topics for this month. 	
liz	Yeah genie therapy we’ll be coming back to that later. 	
ROB	Much, much later. It’s June and June means probably about three things you can guarantee in the UK at least at this time of year: a) every other year England will fail to progress very far in an international football tournament. 	
Liz	It’s sport, it means nothing to me, Rob. 	
ROB	b) some form of hose pipe ban. 	
liz	Of course. 	
ROB	Although apparently not for disableds who are allowed because watering cans are too heavy to pick up. 	
liz	Exactly. 	
ROB	Is that a myth? 	
liz	No it’s true. 	
ROB	It’s genuinely true. 	
liz	It’s true. 	
ROB	And thirdly of course June is the month where we all get slightly sore wrists or at least of us between the ages of about 16 and 21 do because we’re busy doing our exams, GCSEs or A-levels or even all the way up to PhDs - everybody. 	
liz	It’s all around this time of year isn’t it? 	
ROB	And it is a terribly frightening time of year. 	
LIZ	I don’t think it matters how old you get that you still think this time of year I think oh my goodness I remember I wasn’t able to watch telly, do anything nice, it was just cramming, cramming. Not that you should cram of course you should have lots of time.	
ROB	No cramming all right. 	
liz	Is it? Is it all right?	
ROB	Yeah. Did that ever work for you? 	
liz	Actually it did fine. 	
ROB	Doing an all-nighter pro-plus...	
liz	It did all right. 	
ROB	...and coffee powder. 	
LIZ	It did all right but of course there’s the whole thing for disabled people that exams might have this twist where we get extra time and I don’t know if you have that but I did I got...so in a three hour exam I’d get an extra hour, so they’d be like four hours. And if you had one in the morning and one in the afternoon wow! 	
ROB	But did it actually make a difference, do you really think you got a better grade as a result? Or did you really need it? 	
liz	I think...did I really need it - I’m not sure that I really needed it but I took it. 	
ROB	You needed it to get a better grade. But you didn’t need it for your disability. 	
liz	I think that’s it. Well the weird thing is though is that the people that often are entitled to more time for their exams are people that might get tired more easily or have more pain, so you don’t actually want it to go on any longer because it just prolongs the agony. Do you know what I mean? 	
ROB	And also it can be extremely humiliating when you have teachers who don’t really understand the fact that you’d quite like your extra time allocation to be kept somewhat discreet, which is something that I really didn’t get when I was in school. And I remember this so, so clearly, it was the first ever GCSE exam so therefore I was what 15 at the time and it’s the first exam you’ve ever done in your life which means anything and we were all there in my school assembly hall feeling outrageously nervous and I noticed when I sat down at my desk, my exam desk, that there wasn’t any paper and I was okay with that because I’d asked for slightly enlarged exam paper. Let me emphasise ‘slightly’ enlarged exam paper. You got it in A4 I wanted it about A3. 	
liz	And this for a visual impairment ((0:04:06.0?)) 	
ROB	About a size...yes visually impaired size 16/18 font would be fine. 	
liz	So not massive. 	
ROB	Not massive just slightly bigger and I also asked for extra time. 200 nervous 15 years olds in the exam hall, this crusty old teacher Mr [deleted] comes in and in this silent school assembly room full of cowed teenagers he suddenly goes, “Robert! Robert Crossan, where are you Robert? I’ve got your enlarged paper for you Robert because I know you can’t see very well.” And he came along with this literally half an amazon of paper, it was massive. He’d printed it, it must have been the font size of about 60 there were maybe three words on each page, and each page Rolf Harris could have done an entire Bayeux tapestry of Disney characters. And when he actually put the paper down it was so heavy that my exam table collapsed and the papers just scattered. And I was just expecting this laughter of people just mocking me. And I looked around and I could see the lad next to me and he just had his head in his hands just cringing for me. And I complained about it afterwards I actually went with my mother into school to say that was really out of order because you really put me off. 	
liz	This is clearly...we’ve really unearthed something here, Rob.	
ROB	But he wasn’t having any of it... 	
liz	Okay calm down. 	
rob	...Mr [deleted].	
liz	It was years ago, Rob, 	
rob	He was like, “I can’t believe you’ve taken this stance, Robert, I was only trying to help.” 	
liz	Rob, you’ve done fine. It’s okay because you're not the only one. We put this out...	
rob	But it was SO embarrassing, Liz, honestly it was so embarrassing. 	
liz	It sounds like, you know, we put this out on Facebook and Twitter a lot of our followers I think feel the same - really mixed responses but I think the idea of exams put the fear of God up people. Hazel Simmons got in touch via Facebook “When I did my RSA II typing my electric typewriter broke down half way through and because of my impairment I cannot use a manual one.” Now she said this is back in ’81. It took them 20 minutes to find me another and I didn’t get the extra time I just had to carry on, I lost that 20 minutes. It’s just they don’t always get the idea. You are entitled...	
rob	I can’t imagine it’s like that now though. 	
liz	I don’t know. 	
Rob	There’s no compensation to Hazel obviously. 	
liz	We’ve got someone on the line to maybe help tell us what it’s like now. We have Mark Sherin, hello Mark. 	
mark	Hello Liz, how’re you doing?	
liz	I’m very well. Now Mark’s manager of the Dyslexia Centre at Lyndhurst Primary School in Camberwell, that’s right? 	
mark	That’s correct, yes. 	
liz	But at the moment you’re on a mobile because you’re...are you on holiday or doing something over in sunny Portugal?	
mark	Yeah I’m doing a job share helping a school here set up a radio station. Because we have a radio station in our school in Camberwell to help the dyslexic learners express themselves through talking and listening. They can express themselves and show their learning without the barriers of handwriting and spelling and punctuation and stuff like that. 	
rob	Well this is what we’ve said all along - radio is the saviour for almost everything and everybody. 	
liz	Children have exams, we’re not just talking your GCSEs, your A-levels even university children have their SATs don’t they, the S-A-Ts from a young age. 	
mark	That’s right. We like to give children that experience of exams as early as possible now with recent governments. But what we have done is improve the situation enormously from the scenarios you were talking about earlier. 	
liz	So okay so what support and assistance can disabled people get in exams nowadays? 	
mark	Well depending on their disability of course we still have enlarged prints but it’s much easier to manage. We also have, and I’ll talk more about dyslexia because that’s my area of experience and expertise, we can have extra time which means if the children have difficulty with processing speeds they have more time to think and get their answers down. We also are allowed to have scribes who will transcribe what the child has written to make it easier for an examiner to mark and understand. 	
rob	And this is really validating, and we should point out that not all of the comments that we’ve had on Facebook and Twitter are negative. There’s one here from Louisa Wilde who got in touch with us through Facebook, and she says, “My son has ocular albinism and nystagmus...” hello is this a relation of mine this is the exact same disabilities that I have - also apparently he has difficulties with his gross and minor motor skills. But Louisa Wilde has told me that her son is doing the KS1 SATS with a scribe so his papers have been resized and transferred to buff paper. He gets double the amount of time to complete his tests, he’s also doing some of the work on a school provided laptop having taught himself to touch-type and there’s also buff coloured paper which is a phrase I’d never heard before, but apparently this is also used as it prevents glare. Mark, do you find that people come forward with their difficulties? Are they even aware that they’re entitled to these kind of benefits I suppose you’d say? 	
mark	I suppose probably it’s a mixed bag and there’s a cultural difference. I would certainly say that there are some people who understand the system who understand the importance of a label and what that brings in terms of access arrangements, but also in terms of support for their children within the school system. Often with the label comes some degree of funding and that’s really important. But, as I said, it’s cultural. I know from our school in South London there were some cultures, I’m clearly not generalising, but in terms of West African parents often don’t want their children to have a label so can resist the school’s desire to go ahead and do a test and to assess the child in certain ways. 	
rob	So it means to actually acknowledge and accept the benefits is to give a sort of validation to a condition which they’d rather pretend isn’t there? 	
mark	It’s exactly that. And I think it’s significant in their cultures in terms of the schooling to be without a difficulty, you know, to be perfect in their way of thinking. 	
liz	We had a few people on Twitter respond to this as well, Mark, like Sandra Pills she said, you know, she didn’t even know that she had any right for extra time etc. She did, she requested it - now that’s one of the positive comments that we’ve heard. But then Scott Jordan Harris tweeted and said he refused help, he didn’t want to be seen to have any advantage which is similar to what you're saying. And he said but really it was silly because I qualified for extra time and I should have taken it, it might have helped me. 	
rob	I met somebody else who did this when I was in university. They qualified for extra time and these advantages but they said no because they thought it was cheating. I mean do you get that response a lot, Mark? 	
mark	No. I think once people understand why they find learning difficult or why they find the writing difficult with a culture that’s within a school that’s accepting of that and we understand that the child is a learner in themselves, and the disability doesn’t describe the child, then people are usually very happy to take on the extra help. And of course they’re encouraged to and it’s presented in a way that doesn’t make them stand out. For instance, the children I was working with came into a different room and we tried to start their exams a little earlier. So as the time elapsed everyone finished at the same time because it’s still very difficult for children who’ve got extra time to see their classmates out of the window disappearing and going off to play and they knowing they’ve got another 15 minutes. 	
ROB	Now that’s a very familiar image you’ve brought up there. 	
liz	We’re both crying here.	
rob	I even saw two of my friends actually hold up their lit cigarettes and wave at me, I’m on the other side of the exam hall which was more tortuous than you can possibly imagine. 	
liz	More than that I just remember the teaching kind of pacing oh no I have to stay here another few hours. I mean that’s not...	
rob	I thought that was a little bit of chardon freud I quite enjoyed that. 	
liz	Maybe. Now since we’ve got you on the line, Mark, there have been some changes in terms of disabled young people and the support they can get at school isn’t that right? 	
mark	It is right. And the government’s Green Paper that’s just been written and presented, I mean it’s 86 pages long, and you need to have a particular skill in reaching to get through it. 	
rob	And so this means that rather than there being an educational diagnosis for a child with a disability that the school carries out, it’s now more the parents’ duty with a budget in hand that they are given to find the educational treatment or system which best suits their son or daughter. 	
mark	I mean doesn’t that sound fantastic in theory it’s decentralised, it’s put into the hands of the parents, and surely that’s a good thing. It’s a great political headline. But the questions you have to ask about that is how does the parent who isn’t an expert know what’s out there and how do they know what best is going to meet the needs of their child? And so we’re...	
rob	Well what happens if the parents - sorry to interrupt - if the parent says, “Well I don’t know what I’m doing” I’m presuming that there would still be help and guidance there from professional sources? 	
mark	Well you’d have thought so and that’s currently the role of the local authority who suggest and to guide and to hold a catalogue of expertise in what’s available. And a lot of those people in special needs departments in local authorities are losing their positions and being made redundant because it’s deemed not to be front line services and so the responsibility falls back onto the teachers who often don’t have the training or the time, frankly, to see all the different disabilities that are out there. It’s a specialist job isn’t it? If you’re casting your net right across all the disabilities there are. 	
liz	But at the same time, Mark, aren’t some parents frustrated at the system and not getting their children’s needs met as well? 	
mark	Of course that’s the case. And I think it will still be the case because we have this question: should the provision for the child be needs led - so what does the child need and give them that. Well of course that should be the case. But we’re also looking at you know what resources are there? So you can only have what the local authority or the area that your child is being schooled in is available to them. 	
liz	So at the moment this is a Green Paper is that right? So no final decisions we’re just going to have to follow that in the future. 	
mark	That’s right. And it’s really going to have an impact on children with disabilities and their families - the outcomes. 	
liz	So that’s one for us to follow on Ouch. Thank you for your enlightenment on that, Mark. And for taking the time out of your little sojourn to Lisbon.	
mark	It’s been an absolute pleasure. And I would just encourage people to even if they’re not usually involved with politics to find out about this educational Green Paper, write to their MPs, go to the local authorities because this opportunity won’t come around again for another ten to 30 years, it’s very rare that we get a Green Paper on education. 	
rob	Thank you very much, Mark, for all your time. And you can follow us on Twitter and Facebook and you can take part in our discussions too. The details are on our blog which is bbc.co.uk/ouch. 
[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. Back to Liz Carr and Rob Crossan.]	
rob	In a moment we’ll be talking to Sir Philip Craven, President of the International Paralympic Committee, but first on the line from Salford it’s our sporting correspondent, Tony Garrett. Hello Tony!	
tony	A very good afternoon to you. 	
liz	Good to have you here. Now we want to take a quick look back at the last month in disability sport some more GB teams have been finalised, Tony? 	
tony	Very much so. It’s the Paralympic sport year the momentum is growing more and more and we’ve had some more squads announced in the last couple of weeks. Wheelchair rugby team, football 5 aside and 7 aside teams. So lots been going on and obviously we’ve done some wheelchair rugby recently, and the good news is that two of the players we had on one of the previous programmes, Ross Morrison and Kylie Grimes who’s one of the female players, have both been selected. So the wheelchair rugby squad’s been selected. And in football we’ve got both the 5 aside and the 7 aside football teams, the 5 aside for blind footballers, and 7 aside is mainly cerebral palsy players, so they’ve just been announced. 	
rob	And are also we’re gathering some new sports have just been announced for the 2014 Winter Paralympics to be held in Sochi, former Soviet Blackpool as it’s been described, now becoming rather more like a snowy Saint Tropez. So this is going to be in Russia in March 2014 what are these new sports like snowy boccia, what have we got? 	
tony	Not quite snow boccia, but snowboarding and I think this just goes to prove that Paralympic sport is a continuous cycle we have summer Paralympics, we have winter Paralympics and Paralympic sport all year round non stop.  	
rob	So we are joined by the President of the Paralympic Association, Sir Philip Craven. Hello Sir Philip. 	
Sir Philip	Hello from an absolutely beautiful Shabbington near Nantwich in Cheshire. 	
rob	I know the area well, very close to where I was brought up in Chester in fact and you’re in a conservatory with a mug of tea I gather right now.  	
sir philip	Yeah, I’ve just remained in the kitchen because the conservatory’s too warm. 	
rob	It’s a bucolic vision of the rural northwest, Sir Philip, and very apt. I also want to ask you which Paralympic sport, if we’re going to only watch one this summer which one should we absolutely not miss under any circumstances? 	
sir philip	Well I’ve got to be biased, my sport is wheelchair basketball, I played for Great Britain nearly 200 times. And the men’s team have got an opportunity they could even go for gold, well they’re going for gold, they could even get gold in London and for the first time ever the women’s team could well pick up a medal. So definitely I’m being biased, I’m sorry, but wheelchair basketball. 	
liz	That’s the one to watch. 	
sir philip	Yeah, or the two to watch. 	
liz	Now since we’ve got you on we do want to ask you, you’ve become well known I guess that you dislike the word ‘disability’ now can you explain why that is for our listeners? 	
sir philip	Yeah I really detest it actually. But let me try and explain it to you. Quite naturally if somebody has an accident or they’ve had an illness or they’re born with an impairment then it’s quite natural that people are very concerned about that. I know my Mum and Dad were when I fell and broke my back. However, that can create quite negative vibes around the place. There’s a thing that Paralympics do and Paralympians is to be incredibly positive about what they’re doing. They don’t have time to think about the negativity. And for me the term that I’m dead against is ‘the disabled’ this collectivisation and subsequent marginalisation of some mythical group of people who are all individuals, and there’s no need to use it. Now if you want to say a person with a disability well we would far prefer in the Paralympic movement for it to be someone with an impairment and we would only use it probably when we’re referring to our classification systems because the degree of impairment decides in which class an athlete will compete. And it’s really about concentrating on the individual, avoiding negativity and being positive. And normally you don’t need to use the word. What happens when you use it then you also introduce able-bodied you know and just talk athletes, just talk about people. 	
liz	So if we do need to specifically refer to someone you think it’s better that we refer to their impairment or their classification? 	
sir philip	And first of all think about whether you in fact do need to.	
rob	Now I’m going have to challenge you a little bit on this because we are slightly at odds here in how we feel about this, Sir Philip, because my opinion is really that this constant tinkering with what is the correct and incorrect terminology actually for people in the non-disabled community i.e. the majority of the world, are becoming too scared. It makes people scared to talk about disability in any sense because they’re constantly worried about offending or saying the wrong thing because the goal posts as to what’s acceptable and not are constantly being moved to the point where even I, as a disabled person, or a person with a disability or an impairment I’m struggling to keep up with it. And I think it can actually intimidate people quite a lot from breaching the topic of disability in the first place. 	
sir philip	I just think ignorance, understandable ignorance, is the thing that can create fear and misunderstanding amongst people. And I think that therefore education is an absolutely key area here. I think also that it’s not tinkering it’s really saying don’t use it, don’t use it as often as you do, don’t think that when you talk about someone to try and describe them that you would say, “John has a disability” unless it’s relevant to the conversation, don’t kick off with that. Talk about John and everything else that he is as an individual. And so I’m not tinkering with it I’m saying don’t use it whenever you can and get used to that. It’s something to get used to. But don’t be fearful of it. I mean the Paralympics are going to take fear away from this, they’re going to take negativity away from it. And people are just going to be positive about individuals. 	
liz	Good answer. Thank you, Sir Philip. Now you also go on to say that you don’t really think the Paralympics and Olympics should merge. You’re very much for them not merging. 	
Sir philip	When did I say that? 	
liz	Ooh that you don’t want them merging?	
sir philip	I don’t think I’ve ever said that I said that at this moment in time logistically it would be very difficult for it to happen and of course within the IPC we’re very keen that if there was some form of merger that we would maintain the number of athletes in the Olympic/Paralympic Games whatever it would be called and also we’re looking to increase them as and when that is a feasibility and a possibility. So it’s really a logistical problem at the moment, but I’m not dead against the idea in principle of them coming together at some time. But of course you’ve got lead times to games which are minimally nine years so it could not be before, I don’t know, 2024 something like that for the summer games. 	
liz	But ultimately it could be something to move towards in the future? 	
sir philip	Yeah of course. I mean things are developing all the time nothing’s set in stone and whatever’s right for athletes within the Paralympic movement then let’s look to do it. We have a great relationship with the International Olympic Committee, we’ve just signed a new partnership agreement with them and the games are assured to follow on from the Olympics until 2020. But there’s some time between now and 2024, 2028 and we can look at it. 	
rob	We’ve almost forgotten about Tony up in Salford, let’s bring him in now because I know you’ve got a few questions you want to ask Sir Philip as well haven’t you? 	
tony	Philip, a couple of questions from me first of all. With regards to the potential merging of the games is that I mean we’ve got 4,200 athletes in London how realistically could we manage to merge those athletes and the sports into one big umbrella?	
sir philip	Well Tony, good question at this moment I don’t have an answer for it. I think probably the only way it could be done would be to extend the time of the games, whatever the games would be called. But then you would have a problem in that... I mean one of the great features of both games, the Paralympics and the Olympics is that athletes remain at the games throughout the games and soak up the games experience. They couldn’t do that if competition was over, I don’t know, three weeks/three and a half weeks I don’t know. And so we would have to look at it, but I’m not pushing for that at the moment but I hope no-one thinks that we’re fine where we are and things can’t change, of course they can change. 	
tony	Philip, obviously you're on your third term as President of the International Paralympic movement. What would you say has been your two or three most memorable achievements during this time?	
sir philip	Well I said this when we celebrated ten years of the IPC in Bonn and 20 years of the IPC’s existence but I think the biggest move forward has been that we have moved to be an international sports organisation and not an organisation known primarily for disability sports. And I think that that concentration on sport, on athletes has brought far better communication and relationships with international sports federations and also at the national level between national Paralympic committees and the national members of those international sports federations. And we’re about sport full stop. So that would be maybe the main achievement. I think that because of that we have far greater exposure now through the media, through television, through radio as we’re doing now and I think that that’s just good for Paralympic sport for spreading the word, for getting people more and more people, not just young people but people of all ages, thinking that yeah I can participate in Paralympic sport. And the key is participation. It’s not winning a Paralympic gold medal. We want more and more people to play sport then of course you’ll have the best athletes rising whether it’s to the top or to the Paralympic Games but we want just more and more athletes all over the world. 	
rob	Well thanks so much for talking to us today, Sir Philip, just finally very quickly what are you going to be doing between now and the opening ceremony? 	
sir philip	Well that would be telling wouldn’t it? But I broke my hip acting like an 18 year old instead of being 61 in Korea in December and I had to have a hip replacement operation, and I really lost a little bit of my stamina. So for one or two weeks in June I’ll be in France getting some... I’ve just picked up a new wheelchair this afternoon with a nifty attachment on the front so I can go on the road in it. And I’m hoping to get a lot fitter ready for what will be unbelievable games, Paralympic Games in London at the end of August. 	
liz	Well we wish you a speedy recovery and...	
sir philip	I’ve recovered I’ve just got to get fit. Ask athletes about that you may look okay but you know in yourself that you’re not got that stamina that you did have so you've got to bang it back in there. 	
liz	An athlete for ever Sir Philip.	
sir philip	Absolutely. 	
liz	Well thanks so much for joining us. 	
sir philip	Okay. Thank you. 	
ROB	Tony Garrett?	
tony	It’s very interesting I think he’s changed his tune a bit. He’s always said the Olympics and the Paralympics are two big special events. That’s the first time I’ve heard him say, “Actually do you know what we could merge them together”. He’s never said that before. 	
liz	And looking ahead, Tony, with less than 100 days to go some of the squads still haven’t been finalised. Is this right? What’re we waiting on? 	
tony	Well bit by bit it’s all coming together we’ve got to say the Paralympic World Cup in Manchester which is the final major multi-sport event ahead of the Paralympics which will feature wheelchair basketball, 7 aside football and some athletics. And then we move forward to really some key decisions being announced for athletics, tennis and there’s also the athletics European Championships taking place in Holland at the end of June so lots of squad announcements still to come and I say it’s under 100 days to go and the clock is ticking. 	
rob	Why do they announce them so late, Tony? It must be incredibly nerve wracking to get this close and still now know if you're a potential competitor in the games.	
tony 	Very much so. I think if we recall a number of programmes ago we had Lee Pearson from equestrian on, and there’s nine or ten athletes there, only five will be selected and I think it really is for all these sports - tennis, athletes, track cycling where we win loads of medals - basically the selectors want to give themselves the best chance for all the athletes to get the fastest, quickest times, and this is happening throughout the world, to get as many athletes in and get the best qualifying times. And it is going to be heartbreak for a number of athletes who will be told just one month before the start of the Paralympics, maybe six weeks at the maximum, “You won’t be going” that’s tough, but that’s Paralympic sport. 	
liz	So, Tony, I need your advice here. I wanted to ask Sir Philip before the batteries went on his phone, I wanted to ask him is it worth paying £125 for a ticket to go to the Paralympic opening ceremony? There’s a wheelchair space and a companion ticket, I’ve got this chance - should I go, Tony? 	
tony	Well it’s £121 for two people to go that’s £60 each if you wish to consider it along those lines. A one in a life opportunity to go to the Paralympics Opening Ceremony, to go to a premier league football match or a show in London that’s probably sixty quid at least, so a one in a life opportunity...	
rob	Hang on, hang on, hang on a minute Tony let’s just put this in perspective - premier league football match you could get to see Steven Gerrard, Ashley Cole, Petr Cech, Fernando Torres whoever what are you going to see at the opening, you’re going to see someone doing a wheelchair that turns into a hot air balloon or something. Is it really going to be that good?	
tony	Or you can watch it on the telly of course. 	
liz	Okay.	
tony	So I think that’s a dilemma one has but maybe the better value money is the closing ceremony where you’ll be able to see Cold Play perform if that’s your tipple. 	
rob	You were doing better with the opening ceremony. 	
liz	I’ll think I’ll go the opening one. 	
rob	Yeah. 	
liz	No, no thank you Tony. 	
tony	Opening ceremonies are always spectacular. 
[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. Back to Liz Carr and the new fella.]	
liz	Lauren Potter is with us. Hello Lauren. 	
lauren	Hi. 	
liz	Now you're in our studio in California and Lauren’s mum Robin Sinkhorn’s also there. Hello. 	
robin	Hiya, hello. 	
liz	Brilliant. Thank you for joining us. 	
rob	So for anyone who’s been living in, I don’t know, a Palestinian cave over the last three or four of five years Lauren plays Becky in the wildly popular high school drama and musical TV series Glee which airs on Sky in the UK. [Whispers] Other networks are available. She has Down Syndrome and by extension so does Becky the character she plays. Becky is co-captain of the cheerleaders and right hand girl to Sue Sylvester the slightly unpleasant head of the Cheerio’s. So thank you so much for coming in. Now we tried to get you in on a recent show but you had to do some filming so it sounds like you’ve got an incredibly busy schedule with Glee and everything else you're doing. So there’s one question I think everybody really wants to know is how did you get such an awesome role in such an awesome show? 	
lauren	Well there was...it was a nice show and I want to do this and...	
robin	And you auditioned. 	
lauren	And I auditioned. 	
robin	Yeah with about 13 other girls. 	
lauren	With 13 other girls. 	
liz	But this wasn’t your first acting role was it Lauren? 	
lauren	No. 	
robin	You did a movie.	
lauren	I did a movie called ‘Mr Blue Sky’.	
liz	Okay so you were an experienced actor before you got to Glee?	
lauren	Yes. 	
liz	Okay. We want to now hear a clip of you in a recent scene from Glee and it features you, you’re making up your mind as to what boy you’re going to date and you seem attracted to the guy in the wheelchair, so let’s have a listen to the clip. It begins with your inner voice played by Helen Mirren, so let’s listen. 

[Playing clip:
Sweet, sexy and handy capable like me. Where the voice is velvety as my favourite Sunday church dress. It’s decided. Arty Abrahams you’re my new boyfriend. 
What happened to Jason that cute boy you took to the prom? 
Becky:	I like hot dogs and he likes pizza. And I like 			Arty now. What do I do, coach? 
You can ask him out on a date. The worst he could say is no. 
Becky:	True, that.
Frankly, Becky, I think you can do better.]	
rob	So tell me Lauren what’s it like playing Becky? She’s a cheerleader and she was given a tough tryout by the coach wasn’t she? 	
lauren	Oh yeah. She’s […] to Sue but when Sue gets mean Becky goes tough. When tough goes, she stays. 	
liz	We like that is that your character isn’t always really nice, you know, sometimes you are but sometimes like you say you’re a bit mean like Sue Sylvester aren’t you?	
lauren	Yes.	
liz	And that’s great. Is it fun playing that kind of character? 	
lauren	Oh I love it. 	
liz	So you’re in the Cheerio’s but in real life when you were at high school did you want to be a cheerleader then? 	
lauren	Yes I did and it was good when I was starting my tryout and then they end up that I didn’t do the tryout.	
liz	So at your regular everyday high school you didn’t get into the cheerleaders but now you’re a cheerleader and probably the most famous cheerleading troop ever. 	
lauren	Yes.	
rob	Victory is so, so sweet. 	
liz	Are you like Becky at all, Lauren? 	
lauren	Yes she’s hilarious and she’s fun. 	
liz	And do you agree Robin?	
robin	Oh I do Lauren has that little feisty streak in her as well. 	
ROB	And it’s great to see a portrayal of someone with Down syndrome on television where they’re not this slightly helpless, soppy individual which is how they’re nearly always portrayed in dramas in this country, so it’s a huge breath of fresh air. So, Becky, what do you do when you’re not acting? 	
liz	It’s Lauren. 	
rob	Sorry, Lauren. 	
liz	She’s so good. 	
ROB	You’re so good I’m getting...	
liz	They’re one and the same, Rob. 	
rob	I’m so sorry. I’m going to roll with this. So what do you do when you're not playing Becky, Lauren?	
lauren	Well I’m at school and I go to college. 	
liz	You see it seems so glamorous, we see you on TV, in an American TV show, the fact that you're just really down to earth and you still go to college. 	
rob	What are you doing in college, by the way, what are you studying? 	
lauren	Well I studied voice and diction already and I passed. 	
liz	And what next for you? What are you going to go on to in September?	
lauren	I do some music lessons and hip-hop dance. 	
liz	Now music this is interesting because you're not in the Glee Club because they all sing don’t they, sing and dance?	
lauren	Yes.	
liz	Now you can dance I believe but what about the singing? 	
lauren	Well...	
rob	This is delicate. 	
lauren	Yes. This is really funny and I want to say it’s true. My parents were saying, “Lauren, you’re a good actress, you’re a good dancer but, honey, you’re not really a good singer.” 	
rob	Two out of three’s not bad. Me and Liz can’t even get one of those between us. 	
lauren	Right. 	
liz	Do you think that’s true to say then Robin? 	
robin 	I do. She’s actually getter better she practises all the time. 	
lauren	Yeah I agree. 	
liz	Now as well as all the TV stuff Barack Obama appointed you to the President’s Committee for People with Intellectual Disabilities, so you're an advisor - what does that mean? 	
lauren	It means to tell the President.	
liz	So you advise him? 	
lauren	Yes.	
liz	And is that you’re advising him about things for people with learning difficulties? 	
lauren	Yes.	
liz	And what life is like and that kind of thing? 	
lauren	Yes. 	
rob	And this is alongside because you are incredibly busy aren’t you, an anti-bullying campaigner as well. I know I’m reading a little bit about you, you've experienced bullying yourself so this is something which is quite close to your heart I imagine.	
lauren	Yes.	
robin	So what are you doing with the bullying Lauren? 	
lauren	I try to end and spread the word not to use the ‘R’ word. And I did a public announcement with Jane Lynch we wanted to take out the word. 	
liz	And this is, Robin, the word is...what’s the ‘R’ campaign about? 	
robin	The ‘R’ word is to get rid of the word that’s used so much and I don’t know if it is there but in the United States many people use the word ‘retard’ in a derogatory way. And Lauren is trying to end that because it’s really cruel to some people. So she’s also working with a campaign called ‘Defeat the Label’ and abilitypath.org to stop bullying so that people can live in a community where they don’t have to be bullied anymore and go to school and work and not have to be bullied. 	
liz	And this is a massive campaign isn’t it? 	
robin	Massive yeah. I mean it’s going on all over. ‘Defeat the Label’ just came out with their kind of a hands across America it’s the same people that did ‘Hands Across America’ and ‘Way of the World’. And a couple of weeks ago they all the schools across the nation stood up at the same time and said, “Enough is enough! We’re not going to be bullied and we’re not going to let other people be bullied” because so many people stand by and don’t say anything so Lauren’s saying, “Enough is enough” as well. 	
lauren	And also I said different is different, different isn’t bad.	
robin	Yeah it’s just different it’s not bad... 	
lauren	Yeah. 	
robin	...to be different. We’re all different. 	
rob	You can say that again. And going back to, predictably going back to Glee, you probably, Lauren, you must be, I would say, the most famous person in the world with Down syndrome right now. How do your disabled buddies cope with your fame? I mean are you getting asked out on a few more dates now? Or is everything still relatively normal? 	
lauren	Yes. 	
liz	Is that yes to you getting asked out a lot more? You can be honest with us, come on. 	
lauren	I’ve been recognised like a lot. Like in stores, grocery stores…	
rob	What do they say to you? What do they come up and say, what’s the usual thing they...what do they want to know? 	
lauren	They say, “Are you Becky Jackson?” And, “Can I have an autograph?” “Can you take a picture? And I was wondering may I put you on Facebook?”	
liz	And do you love that? Do you enjoy that? 	
rob	Or does it get on your nerves?	
lauren	I really enjoyed it, it was really fun. 	
liz	And, Robin, did you ever think that Lauren would be a famous TV star? 	
robin	Oh my gosh I guess I should have because she’s been an actress since she was first born really. But who’d have thought it? I mean I’m amazed every day. I set at the studio, at Paramount Studios, and I look around and I watch her and I watch the TV shows and we’ve been travelling the country and she’s just got an invitation to the White House and who’d have thought it. It blows me away every day it’s amazing. 	
liz	So do you think your daughter is the most famous person with Down syndrome in the world today? 	
robin	Well you know actually there was an article in Entertainment Weekly and they did say that, that she is. I think so, we’re getting... she’s getting fan mail from around the world now. And it’s not just from people in the disabled community it’s from I think the most amazing is when college students from Europe will write to her and say, “I knew nothing about Down’s syndrome but because of you I researched it and now I do, and I understand more.” To me that’s the most amazing part of this all. 	
rob	And you mentioned the invite to the White House have you been yet? 	
robin	Well she was at the White House once but the President wasn’t there and she’s just received an invitation for a party on the lawn with the Obama’s, it’s coming up and that’s for the people that work in the...you know like her committee that she’s working in.	
rob	Well it’s the least Barack and Michelle can do after not even being there the first time around.	
robin	I know. We did meet the dog the first time, we met Bo. 	
rob	Who I think makes most of the important decisions anyway from what I’ve heard. So just finally tell us a little bit about your internet drama, Leader of the Pack Lauren?	
lauren	Okay, what do you want to know? 	
rob	Well it’s available on YouTube is this right? 	
lauren	Yes. 	
rob	And so these are little kind of ten minute shorts, it’s like a little soap opera can you tell me exactly what it’s about? Are you in it or are you directing it, what’s your role in this? 	
lauren	Well my role is I play Jenny. And Jenny likes the boy that she really liked and his name is Blake who is an actor too. It’s about a guy who loves the girl who has Down syndrome. Is that right, Mum? 	
robin	It’s about a guy and it’s about a girl. 	
lauren	It’s about a guy, it’s about a girl, they fall in love.	
liz	Now Lauren I’ve been watching Glee since it began I think and can you give us one of your lines from Glee, would you be able to do that do you think? Can you remember them? 	
lauren	Yes. I do remember. Let me think. “If you put that red pepper, Blake, on my pasta I will ‘edge’ you.”	
liz	What were we saying about you not being a cutesy happy all the time character - love it! Love it! 	
rob	For Glee fans this is the equivalent of us rolling over and having our belly tickled. It’s absolutely wonderful. Thank you so much, Lauren. Thank you so much, Robin, for joining us from California. 	
robin	You’re welcome. 	
rob	...in the sweatiest studio...	
lauren	Thank you so much.	
rob	...on the west coast. And we look forward to much more Glee and also much more Leader of the Pack. Thank you again. 	
robin	Ah thank you. 	
lauren	Thank you again. 	
liz	Take care. Bye. 	
robin	Bye bye. 	
lauren	Bye bye. 
[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 felt so 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. 
Back to Liz Carr and Rob Crossan.]	
liz	So has disability nearly been cured? Well we’re going to discuss that now and on the line from San Diego we have Professor Sir John Burn, normally based at Newcastle university but he’s the lead clinician for NHS North East and the Genetics lead for the National Institute of Health Research. Sir John, hello. 	
Sir john	Morning, or good afternoon whatever, wherever you are. 	
liz	Thank you very much for joining us. 	
rob	And we’re also joined by playwright Kaite O’Reilly who has just opened her latest play, ‘Leaner, Faster, Stronger’ at The Crucible in Sheffield - very timely as it’s all about the Olympics, the Paralympics and pushing your body to the limits scientifically speaking. British newspaper The Guardian says, “The play examines whether there’s a cost associated with with the pursuit of excellence and what ‘the best’ means in a world of smart drugs, designer babies and genetic modifications.” So, Sir John, I’m going to turn to you first, we’ve seen so many stories over recent weeks and months about cures, therapies, enhancements for the human body and there seems to be all these diabetes breakthroughs, blindness at least partially restored with microchip implants; the obesity gene has been found, we can reroute signals around parts of the body that are paralysed. There may be a cure for MS, Parkinson’s - just repeating all these things I’ve seen in the press, so just how close are we? 	
sir john	Well I think the progress that we’re making now on a whole range of front is, at times, breathtaking and very exciting. So I think the first thing to say is that it gives us hope in many situations where previously we had none. And the people who have been carrying these impairments sometimes all their lives, suddenly see the prospect of some intervention. And we need to strike a balance in a sense between supporting that hope and encouraging it but also making it be realistic. There are many steps to take between that headline that you see in your newspaper that says something worked. The question is does it work every time, is it safe, the side effects, what does it cost? What do we have to spend of our limited health budget to achieve that end, and those are really difficult decisions sometimes. Because there are treatments now for a range of ((0:45:49.0?)) diseases that cost hundreds of thousands of pounds every year per person and at some point you have to say, “Well that’s great but can we afford that?” And so my role in a sense sits on both sides of this fence, I’ve all my life been looking for innovative change, but I’m also cognisant now in my role for the NHS of thinking about the big picture. And sometimes it’s not just about going for the whiz-all new treatment it’s about doing what we could do in basics a lot better and we mustn’t lose sight of that as often in terms of the global impact on disability you make a bigger impact by simple giving yourself better organised and ensuring that people can get their wheelchairs and you know sort of practicalities being dealt with. 	
rob	So it seems like it might be...	
sir john	We need to keep our weight on both feet. 	
rob	So it seems like we might be entering a future, Sir John, where there’s a real distinct case of disability ‘haves’ and disability ‘have nots’ in an economic state you can either afford the technology that’s there or you can’t. And so there are cures for everybody but not everybody is going to necessarily get those cures. 	
sir john	I think that’s certainly the case on a global scale already in a sense, or it has been. And to some extent it’s true also in the UK because clearly there are some aspects of the more sophisticated intervention that people just...we can’t yet deliver through NHS means. And so yes there will be a degree of that. But I think we all recognise that we should try to minimise that because it does create a very unfair society. So I think where we can we constantly need to be looking to incorporate many of these interventions. Bearing in mind that the global cost to society of someone who is impaired and unable to work can be huge and although it might seem a lot of money to spend on a stem cell implant or whatever if it puts someone back on the street and working and we have, for example, have a team in our hospital doing corneal limbal stem cells and giving sight back to people who’ve lost sight in their eye by transferring stem cells from the other eye. That can make a huge difference to a person’s earning ability. So we’ve always got to keep the cost in our brain but be constantly looking to introduce innovation where we can demonstrate it makes a difference both to the individual and to the cost to society. 	
rob	We’ll return back to you in a moment, Sir John, and I’m interested in hearing a lot more about specific disabilities. But, Kaite, I’m going to come to you now. What innovations and therapies did you come across?	
Kaite	Well the plays that I’m...well it’s just about to open this week is very much looking at the relationship between the developments in sports science, bioengineering, genetic engineering and the demands and pressure to be the best in sport. So it’s very much in a sports context. And I’m not an expert by any leap of the imagination in this, but I had been in residence at Sheffield Hallam university working with Dr. David James there who’s a sports engineer, and some of the things that he was telling me about and that we were exploring during the research was absolutely fascinating. We only need to look at someone like Oscar Pretorius with his carbon blades, you know ‘the fastest man in the world on no legs’ as The New York Times called him, to get an idea of the possible advances in sport where again everybody wants the winner, big business, merchandise, sponsorship, commerce all rely on people being leaner, faster, stronger breaking records, being a spectacle and getting fans. And part of what I was exploring in the play is the relationship between the developments that we’re having where, for example, one thing that I was writing about in the case of people that are cyclists if they’ve lost a limb or if they have an amputation the leg will actually, the bone will now meld with the steel will go straight into the bike, rather than in previous years we might have done something as kind of coy and old fashioned as trying to create an artificial foot which then might actually go in some way to the bike, you know on the pedal. And we’re bypassing that in the context of sport. And so...	
liz	So, Kaite, we’ve got improvements to people’s impairments, people’s conditions, cures even possibly, but then also what you’re talking about body enhancements, improving the speed and the ability of body...do you think they’re different? 	
Kaite	I think they are from the little bit of research that I’ve done. I’ve been told that the sports medicine it isn’t as regulated as general practice might be. So often because of the pressures for sport to keep your sponsorship, your merchandising etc. etc and national hope for gold that kind of pressure on an athlete who’s been injured they’ll want to get back in the game a lot faster than usual. And I think it’s perhaps trying to enhance somebody’s career, their speed, their record but it’s still always towards the results of the sport itself, and it isn’t necessarily about the improvement for the individual themselves. 	
rob	So we’ll come back to this in a moment, Kaite, but I’m really keen to get on the line now, we’re very lucky, from Lappi in Finland we’re here with Miikka Terho, hello.	
miikka	Hello. 	
rob	Now he’s actually experienced all this. So we mentioned the sight restoring retina implant earlier and Miikka was the first to be fitted with this technology and that was three and a half years ago. Now you’re going to have to correct me if I’m wrong here, Miikka, but as far as I’m aware you were given the implant for three months and tested only under laboratory conditions and you no longer have it. So when you actually had this implant what could you see with it, was it like real sight? 	
miikka	It was not the real sight on a traditional perspective but I would call it quite primitive way of seeing. I just want to tell you a short example from the very beginning. Like the very first day after the surgery when the implant was turned on right away I noticed that my eye hit on something and I saw something but I didn’t see anything real in front of me I only saw the flashes of lights. Every time when my eye hit on something, somebody’s shirt or anything on a computer screen, it was just a flash of light in my eye. But then little by little, and I’m talking about hour by hour, quite fast learning process everything started making sense. 	
rob	And what sort of emotions were going through your head while this incredible process was happening? 	
miikka	It was of course you know I went for the surgery I went through the process and the whole research so it was interesting that finally I was able to focus my eye on something. 	
rob	So not terrifying in any way because I imagine there must be quite an element of fear almost - it’s impossible for me to say - so it was actually it sounds like it was something that was quite calm and benign for you. 	
miikka	Yeah it was not...no fear at all. Just the way I took it I didn’t go through the process in order to get my eyesight back, that was not the first priority. I knew it was a research. So I was just excited, I was just like any kind of like an athlete because I consider myself a competitive person, so every piece of result we got it was just some...we just win something you know. So I was kind of like a technician. I kind of like I think one example for people to understand the way I felt, I felt like a formula one driver, testing driver who’s surrounded by the engineers and technicians. I drive one lap, I come back to the pit and I tell them how I saw it. Then they start doing something else adjusting and all of it like that. 	
liz	I mean it sounds amazing, not frightening at all and that you were absolutely thrilled to be part of this. Now it’s over do you think that there will be improvements and that in your lifetime there will be a cure for blindness?	
miikka	I believe so too because even during those three months that I had the chip like I said in the very beginning I only saw the flashes of lights, but after a couple of minutes, after an hour all objects started making shapes and I was able to identify different things. So the learning process was very quick so I believe that the human brain is such a powerful organ so as soon as I started getting images all of a sudden my brain started making more sense out of them. 	
rob	Now, Sir John, you’ve been listening into this I don’t know if you can put a timeframe on sight returning we’re talking...we’re thinking cloning organs or growing back limbs with stem cells and processes like this, I mean is there any kind of...can you put a clock on this? 	
sir john	Yeah and I’ll try and answer that. In a sense I’d like to just pick up on what Miikka said there because I was thinking exactly the same thought about formula one racing cars, and you could draw an analogy here with that sport, the sport work of Kaite, that in a sense what we’re looking for here is testing where the limits are, developing new concepts, you know, whether it be sort of ways of making cars go faster or ways of connecting the brain to the outside world. And some people say that’s an awful waste of time, it’s very expensive. But the fact is that the knowledge we gained can then be translated into some very common or garden improvements for a 90 year old lady who’s lost her eyesight through macular degeneration, for example, that might keep her independent in her home rather than bring her into a hospital. So I think there is a cross-talk in all of this conversation that we are talking at one and the same time about trying to find a cutting edge development and then looking at that in the broader sense and seeing how we can incorporate it into broader healthcare. Now in terms of vision I think everyone appreciates that being able to see is a pivotal issue in terms of independence. And what Miikka pointed out there in fact I experience every day, I’ve just been given a contact lens in my weaker eye to allow me to read without wearing glasses, and my brain every morning after about ten minutes just ignores that eye when I look into the distance, and when I look at something close up it ignores my distance eye and uses the close-up eye. So the brain’s very good at adapting to that sort of information. There’s lots of tricks you can do with inverting glasses and things to prove that. 	
liz	So when do you think we’ll able to see these cures, Sir John, when do you reckon? 	
sir john	There’s another problem with this, this is the sort of challenge of the sound bite, when are we going to cure cancer? Well the answer is we’ve more or less cured childhood leukaemia compared to what it was when I started in medicine. Many cancers are now curable but you know a cancer is a myriad of different problems and it’s a myriad of different challenges in terms of the age and stage of the person who gets it. Similarly visual loss might be a child born without eyes or it might be an elderly man who gets macular degeneration and loses the ability to focus. So you can’t just say how do we fix that in one sentence. Many of these aspects have been successfully treated in the past by avoiding the cause or by treating the eye with various medications. And there’s now an anti-body treatment, for example, for wet macular degeneration which has been in the news at the moment. The problem is it’s very, very expensive. And the so the challenge is can we afford it as I said before. 	
liz	So can we pin down something like diabetes do you think we can get rid of that? 	
sir john	I think diabetes is an interesting example of where you want to get ahead of the game. I mean the answer is don’t let yourself get to the stage where you get vascular damage to the eyes by improving the care of the diabetes itself. And that’s obviously the best solution there. And that’s where a lot of this work on stem cells and adult stem cell treatments is very exciting. If we can give back the body’s ability to produce insulin in response to food then you cure it at source. And instead of having to stick needles in with manufactured human insulin made in a factory the body manufacturers it itself. Now that’s a credible and realistic prospect but we do need to be careful not to get too excited about it’s going to happen tomorrow. Once you develop a medical intervention it can take several years to go through the very rigorous testing to be sure that it’s safe and reproducible and affordable. 	
liz	Now, Kaite, I know that you wanted to come in there I think. 	
Kaite	I was actually just going to be, if you like, devil’s advocate as somebody who’s visually impaired who just doesn’t want to be ‘cured’. It was just to put on another angle to it that I just know from some other friends of mine as well who you know will identify as crips or might be part of the whole kind of crip culture scene, we’ve often talked about this and we’ve said that we wouldn’t necessarily want our bodies to be different or for our experiences or our impairments that in so many ways create the vision, if you’ll excuse the pun, or the creativity that we have. And I just think that that’s also an interesting thing to float out there because I know quite a lot of people who would say it’s great for other people, I think that’s fantastic, but we shouldn’t necessarily assume it’s a compulsion that we have to cure this, we have to get rid of this, we have to eradicate this. Because for those of us who have spent many years with different impairments I also want to embrace the positive, creative experience that an impairment can bring and it’s not necessarily something that is to be equated immediately as like, for example, cancer and so on. 	
rob	So, Kaite, I know you had an interesting experience with someone you know who had cochlear implants recently. So is this an experience which has shaped your opinions?	
Kaite	Basically I know several people who identify as deaf with a capital ‘D’, you know therefore identifying as somebody with a linguistic and cultural difference and community who have chosen to have cochlear implants which, you know, in itself is quite paradoxical. One person is just having the most wonderful time with it and saying it’s extraordinary the world is suddenly so multi-layered for me it’s wonderful. The other person is desperate to get rid of the hearing because it’s having a very detrimental effect, almost existential to the point that she feels constantly that there is this noise, that there is a threat, that the serenity that she said she used to have previously has been spoiled, as is her imagination now by the interference of sound which I thought was extraordinary. And the fact that I had two close friends that had both had a similar intervention and extremely different experiences, you know obviously that’s fascinating, particularly to myself as a playwright. But I think also fascinating for some of the discussions and the debates about these developments and what can go wrong as well as what can go right. 	
rob	Well they were talking about things going wrong, there was an incident where you knocked the batteries out of one of these people is that right? 	
Kaite	Yeah I grabbed hold of her and hugged her and part of the thing that’s quite strange is with these...and quite a few of the other developments that we’ve been seeing in the papers lately and on the television and so on seems to involve different metal bits with wires and lumps of metal screwed into heads and so on...	
liz	Miikka, did you have wires sticking out of your head maybe?	
miikka	Yes I had but that was only the testing version that’s not the permanent one and the people who have the similar retinal implant at the moment they don’t have the wires sticking out of your skin anymore. It was very uncomfortable. But I was just going to say that Kaite’s definitely right that there are many people, impaired people, who don’t want to be cured so to speak. And definitely blind people, deaf people the same thing. But especially in my case and many retinitis people and those patients and people like me we pretty much started losing our eyesight when we were adults. Like I was about 30 years old and I still drove a car. And then all of a sudden I started losing it. So if I have a chance I definitely want to get my eyesight back, even a very limited one. 	
rob	So thanks so much. We really would love to continue this conversation but we’ve got to wrap it up, so very quickly I’m going to finish with you Sir John; should we be...what should we be leaving people with should we be raising hopes or dampening expectations? 	
sir john	I think we should be always raising hope and I think that the conversation we’ve just heard has emphasised the complexity of the challenge we’re facing incorporating new knowledge into existing situations. If people have learned to adapt that’s a form of cure if they can actually live with an impairment so we shouldn’t be forcing things on people. At the same time most people, as Miikka said, if you’ve had an ability and it’s taken away from you the vast majority of people want it back. And we should be looking to give them it back giving them their independence because that can both advance science and make healthcare cheaper. 	
liz	Well Professor Sir John Burn, Kaite O’Reilly and Miikka Terho thank you so much for this discussion, thank you very much. You can read about Kaite O’Reilly’s deeper thinking around all this on our blog bbc.co.uk/ouch in a post she’s written for us. And that’s the end of the show. Thanks to Emma Tracey, Vaughan Simons and studio manager, Richard Andrews. The producer was Damon Rose. 	
rob	How many people do you think listen this far, Liz?	
liz	Four. 	
rob	Four yeah I was thinking around that number.	
liz	Maybe three.	
rob	Well the unique thing about podcasts is that you can turn them off and then you don’t have to come back to them if you’re doing anything vital like having a sex change or buying some Marmite, I don’t know. So I think we should have a special little club for people who get to the very end of the show. 	
liz	Like you and me and the producer? 	
rob	Yeah. If you are still listening then email us at ouch@bbc.co.uk and you can call it what ‘I’m still listening’	
liz	I’m still listening. 	
rob	...in the subject line and you can be part of what shall we call it a special end of podcast club. 	
liz	Wow!	
rob	A club I know I haven’t been a member of the club for ages! 	
liz	We should have a perks programme as well. 	
rob	Yes exactly. What can we do for it?	
liz	What can we do?	
rob	Email us and we’ll name check you and maybe think of something slightly better before the next show. 	
liz	I’m still listening! Anyway we are back next month. Tweet us at bbcouch, find our page on Facebook, email us on ouch@bbc.co.uk we do read all your messages. 	
rob	So we’re playing out with a track from learning disability band Fish Police. They joined us in the studio in edition 59 of the show and it all got a little bit anarchic when Mat Fraser asked them, I thought a perfectly innocent question.	
mat	If there was a guest artist you could invite to sing with the Fish Police who would be your favourite? 	
Fish Police	Chicken nuggets are me. Chicken Nuggets!	
rob	And people say the show has improved, hasn’t it - please? I don’t know. So we’re going to hear a track from them taken from the recently released album ‘Sounds of the Disabled Underground Volume III’ poor disabled people stuck underground, someone should really do something. It’s called ‘Fish Water’.	
liz	Not dish water. 	
rob	No fish water. Goodbye. 	
liz	Goodbye.
[Playing music]