Ouch Talk Show #93 January 2013
bbc.co.uk/ouch/podcast

Presented by Rob Crossan and Kate Monaghan

rob	Can we still say Happy New Year? Well as everyone sobers up and faces reality after the holidays, we’ll be finding out what our Twitter followers want from 2013 with a bit of help from political journalist Sean Dilley. 	
Kate	A number of celebrities and noteworthies revealed in 2012 that they have difficulty with their mental health. At the beginning of 2013 we ask if we’re now a bit closer to breaking down that stigma. Student Hannah Bilverstone and One in Four editor, Mark Brown, are here to discuss this more. 	
rob	And what does sound sound like? Well receiving a cochlear implant is said to be rather stressful and peculiar, and we’ll be speaking to a man who had one fitted two months ago which was activated just before Christmas. Has he got anything like normal hearing now? That’s in 20 minutes.  	
kate	So stayed tuned. 
[Jingle: From the BBC in London it’s the Ouch Talk Show]	
rob	It is indeed the Ouch Talk Show the very first one of 2013. I’m Rob Crossan, but there is no Liz Carr this month. Why? Well is she too showbiz – possibly. She’s going to be in ‘Silent Witness’ this year. It is the fact that she’s developed – what disability number 17, she’s now got 17 belly buttons where her ears used to be and now has a huge phobia of macaroons – I’ve no idea. But standing in we have Kate Monaghan; hello, Kate.	
KATE	Hello Rob. 	
rob	And I’d like to think that we sort of know each other a bit although when we were at reception earlier I was sat next to you for ten minutes and you didn’t bother saying hello to me. 	
KATE	You were busy, Rob. 	
rob	Got off to a bad start. 	
KATE	It did get off to a bad start but you were busy, I had my phone out, I had important emails to send, I’m a media darling, you know, I can’t be talking to everyone who sits in reception. 	
rob	Is that why I saw you on eBay bidding for a Jason Donovan poster. 	
KATE	Hey, we said we weren’t going to mention that, that was private. 	
rob	So tell us a little bit about yourself and you’re a more than adequate replacement for Liz, you’re a telly person. 	
KATE	I hardly think so. 	
rob	You're a showbiz person as well aren’t you? 	
KATE	Yeah, yeah totally showbiz, totally showbiz. Well yeah I run a production company and we make documentaries about all kinds of things but our most recent one that’s going to be airing in February on the CBBC channel about some kids with Down’s syndrome which I’m very, very excited about because I think it’s one of the first times that, you know, young people with Down’s syndrome are going to be telling their own stories which is good. But I mean mainly that just means me sitting around at home watching telly pretending to be working. 	
rob	Otherwise known as research. 	
KATE	Exactly. A bit like you I assume?	
rob	That’s what I do yeah. I go around on holiday and call it work... 	
KATE	Yeah, yeah. 	
rob	…most of the time. 	
KATE	Well there we go, you see, that’s better than mine. I mean I just watch Jeremy Kyle. 	
rob	I know but I have to get dressed to do my job you can do it in your pants. 	
KATE	Yes I can…well in my pyjamas. 	
rob	You can. 	
KATE	My loungewear. 	
rob	We also bonded earlier about the fact that we both support terrible football teams. So this is going to be a fabulous show I have a funny feeling in my waters. Right, so it’s our topical bit now…	
KATE	I don’t want to hear about your waters, Rob. 	
rob	We won’t let’s discuss that later. 	
KATE	No thanks. 	
rob	Well as you know obviously we are a podcast, we are not live, so we can’t really do up to the minute breaking news, but we can sort of lick our finger, put it in the air and see which way the zeitgeist wind is blowing. And this month we’ve got two people in the studio with a mental health link; we’ve got Hannah Bilverstone and Mark Brown, so hello to you both. 	
hannah	Hi. 	
mark	Hello.	
rob	And Happy New Year!	
hannah	Happy New Year. 	
mark	And to you. 	
kate	So, Hannah, you’re 20 and you’re from Welwyn Garden City is that right?	
hannah	I am, yeah. 	
kate	So, listeners, you might remember that Hannah was on the show almost two years ago when she interviewed Mr Alistair Campbell for us. And in 2011 that’s show 66 for your podcast geeks you told us a bit about your mental health difficulties and gave Alistair a bit of a hard time, is that right? 	
hannah	Yeah a little bit. 	
kate	Nice. Alistair had thought that Hannah supported his party, the Labour party, until Hannah you showed him your true colours. Let’s take a listen. 
[Playing clip: 
Hannah: Before when the election was going on and all the campaigning I was very much a Tory, I’d been a Tory for a long time. And now I’m not and will not be voting for a long time because I complete lost faith in all parties. I completely do not agree with…I completely agree with what you’ve been saying, Alistair about…
Alistair: Vote Labour then Hannah. 
Hannah: I don’t think I’d have a roof over my head if that happened.]
What are you up to at the moment since doing that? You’ve been to university? 	
hannah	Yeah I was in my first year at university when I interviewed him; I’m now in my final year and stressing out a lot because there is so much work and I’m really behind. But yeah I’m just kind of looking forward to the next stage of my life trying to decide what I’m going to do after uni, that kind of thing really. Yeah just plodding along. 	
kate	And how do you find your mental health kind of impacts on your university work? 	
hannah	It does impact quite a lot my ability to cope with the workload is often affected. The way my illness works is that I can be stable for an indefinite amount of time and then suddenly I’ll have an episode where I’m unwell. I suffer from Bipolar disorder so my moods tend to fluctuate and how I’m able to cope with my life kind of alters as my health does. And so university has been quite challenging but luckily I’ve had a lot of support from my university and they make all sorts of accommodation and extra arrangements and so I’ve actually managed to keep up with all of my course mates and I’m not behind in any of my education, thanks to people being sort of more accommodating and sort of changing the way how we do things which has been really helpful. 	
rob	Now, Mark, hello by the way. Hello Mark Brown. Now you’re the editor of One in Four magazine and I’ve been told through a veil of tears I should refer to this as a ‘glossy quarterly’ which you started in 2006. Please stop me if I’m wrong. 	
mark	Yes it’s about that. 	
rob	About that. So let’s quote from your website it says, “One in Four inspires people with mental health difficulties to get the best out of life while challenging stereotypes and spreading information to help everyone understand mental health difficulties better.” For example, your latest issue it’s got pieces on romance and anxiety; the big society; what pets bring to our lives; how you can help your doctor to help you - and it feels like there’s been some movement in the air as to how we talk about mental health in the last 12 months thinking about the likes of Rebecca Front, Frankie from The Saturdays, the slightly less important Jon Snow; two MPs Charles Walker and Kevin Jones all these noteworthies linked up to say that they have problems themselves. Do you think that 2012 will be remembered as the year where stigmas, whatever they may be, started to disappear or dissipate? 	
mark	I think in some ways that’s absolutely correct. I think 2012 was a year where more people than ever before were talking publicly about mental health; and that’s obviously a good thing because one of the things that I’m sure Hannah will agree with me on this, is one of the things certainly growing up with a mental health difficulty is that you feel a kind of sense of shame and a kind of outsider-dome and that no-one really understand what you’re going through. And that there’s somehow something a bit embarrassing or incontinent talking about the difficulties you experience. So on that level 2012 was absolutely a year where there was more discussion about mental health in the media. Though saying that, overall, 2012 was a bit of a sort of interesting year for mental health because a lot of people with mental health difficulties have experienced a whole load of added insecurities about their lives during 2012. 	
rob	How did these come about? 	
mark	Well we had a couple of really big things that happened which you might not say are directly mental health things but they kind of are because it really impacts on people’s lives: you had the Health & Social Care Bill which was an exciting bit of legislation that completely redefined how we do health services. So that introduced a little bit of insecurity into the idea of whether you were going to get any help or support or what that help and support might be. And then also the stuff around benefits and the cuts to services as well introduced the kind of a sort of worrying series of, “Oh God well I quite like this service it’s really given me a hand but they’re telling me that they might not be there in six months.” So I think 2012, on one hand there was quite a lot of discussion around mental health, but it tended to be somewhat in the abstract. 	
rob	It was more ephemeral no concrete…	
mark	Not so much ephemeral it’s really important it raises awareness of the issue and it raises awareness of the possibility of mental health difficulty as being a factor in your life. But what didn’t happen for me for the connection between that discussion of quite famous people and the things they experienced and the actual day-to-day practicalities of getting on with a mental health difficulty. So that’s why it’s great hearing from Hannah that say at university, you have accommodation and, you know, you have the things that allow you to get on with your life. I think in broader discussion about mental health what hasn’t happened in 2012 is the broader discussion about what us normal people with mental health difficulties really need to happen. 	
rob	What do you think, Hannah, is it useful having celebrities, whether it be Jon Snow or a member of The Saturdays coming out, as it were, and telling the public at large about their mental health difficulties or is this just an irrelevance to you? 	
hannah	I find it fairly irrelevant and unhelpful. It’s good in the way, it’s a very superficial level talking about it on a really superficial level which I think is how all acceptance of disabilities and difficult things like that begin, it’s always talking on a very superficial level and eventually it gets down to the actual nitty gritty and the reality of it. But I have a huge problem with these celebrities coming out saying they’ve got mental health problems because they don’t portray a realistic view of what life is like. I mean Frankie from The Saturdays, as an example, I mean obviously we don’t know the real details of what went on, but I understand she spent a little bit of time in hospital, I think she was in The Priory, came out, did a magazine interview and then two weeks later she was back looking really glamorous on stage back to work and stuff. And I think although she obviously will have had help, and I don’t doubt that she had a very difficult time, most people aren’t able to do that, you can’t go back to a functional life that quickly. And I think it puts a really unrealistic view on what regular people what’s expected of them. Because, I mean, for me I was only able to get back to a functioning level of life, I mean it took me four years I reckon. 	
kate	I mean Frankie, I mean obviously she’s not here to give her side of the story, but she, from what I’ve read, she had battled with it for quite a long time and she only came out and talked about it when she felt better. But I remember being at an event at Channel 4 where Jon Snow talked for the first time about how he struggled with mental health and he has ongoing talking therapy. Do these celebrities not give us a chance to come out and it makes it easier to say, “Yes me too”?	
hannah	They do, undoubtedly they do, and I think depending on the way they go about it they do a very good job. I wish they would talk more about the reality of living with mental health was like. I mean if you look at someone like Frank Bruno, for example, now I think he’s a really good representation of what the reality of living with a mental health problem is like because his struggles have gone on for a long, long time and it’s his health has gone from being very well and he’s gone back to being very unwell again and that’s the reality of it. It’s not just kind of a straight line going upwards, it fluctuates a lot and you can be better one minute and then you can have a relapse and it doesn’t get better straight away. 	
kate	I think that’s an important thing to think about. Now, Hannah, obviously you’re 20 so you're quite young, and The Prince’s Trust has just published its annual Youth Index Survey which measures happiness in the UK’s young people. Over 2000 16 to 25 year olds have been surveyed and the standout findings from that survey was that one in ten young people feel that they can’t cope with day-to-day life. And those not in work, education or training are more than twice as likely to feel this way. And then 27% of respondents in work feel down or depressed often or always compared with 48% who are not in education. What do you think is going on with the younger generation? 	
hannah	I think growing up today is really, really challenging. There’s a lot of difficulties as well with unemployment. I know that once you get to 16 and people who aren’t able to stay on in education or maybe due to financial reasons or it’s not always the right option for them. 	
kate	Mark, what do you think? 	
mark	I think it is quite a weird time for young people isn’t it? Because as creatures, human beings, we’re based on meaning aren’t we? We sort of look at our lives and we ask ourselves what our life means. And it seems to me, you know, if you're talking about young people who are not in education, employment or training what you’re actually talking about is young people who have kind of run to a full stop at a really, really early point in their life. And so one of the interesting things, for me, about that in regards to mental health is that having a mental health difficulty anyway sort of very often reduces the life chances you have. And so for young people with mental health difficulties you’ve kind of got a double whammy now in that the opportunities and the chances that maybe were afforded to people who are ten years older, or 15 years older or 20 years older just aren’t there for young people now. So you’ve kind of got…I mean we talk about there being ‘a perfect storm’ in regards to the effects of austerity and recession, but I think young people with a mental health difficulty at the moment will really be looking at their lives and thinking: actually I’m not really sure what it is I’m going to be able to do. And I think that’s a really awful thing to be confronted at at any age, and it’s particularly awful when you’re 18 or 16. 	
kate	Is there anything you think the government should be doing to try and help this particular demographic above other demographics? 	
mark	I think it’s an interesting thing with young people because very often what policymakers and what older people think young people want isn’t necessarily what young people do want. And if you ask young people what they want you very often don’t follow their advice. One of the interesting things around that Youth Index for me was that 22% of young people said that they didn’t have anyone to talk to about their mental health or their happiness. And it seems to me that, certainly with young people up to the age of 18, with children and adolescent services the models by which help and support are provided don’t really fit the realities of young people’s lives. Because one of the things that I always wonder about is if you aren’t lucky enough to be able to go on to university, and you have a mental health difficulty, once you hit the age of 18 the additional support that you get kind of disappears. 	
kate	Hannah are you worried about what’s going to happen to you after your graduate and how you're going to be able to go into employment and find an employer who’s understanding of your mental health? 	
hannah	It is a concern for me. I try not to think about it because I feel like everyone’s got enough to worry about without thinking of something that’s so far in the future. And I tend to try and just take things as the come. But it is a concern for me because if I look at my education when I’ve got unwell I’ve had to take a lot of time off and with an employer it’s not a very attractive prospect in a potential employee that the likelihood they’re going to have to take extended periods of time off. I would just hope that they’d be understanding and, therefore, I’d be able to show them that I can be a good employee. 	
rob	Would you keep your…potentially in a job interview situation, do you think that you’d keep your mental health situation, would you keep it covert or would you always be honest about it from the word go and be upfront about it? 	
hannah	I think if it came up, if I was asked anything like that then I would always be honest but I have a policy of not mak--…it’s not the most important thing about me, it doesn’t define me. And especially if I was in a job interview, for example, that the main thing that I’d be telling them is why I’d be good for the job not the fact that I’ve got a mental health problem and it may affect my performance. I’ve been ill for a really, really long time now it’s coming up to ten years and so I’ve had a lot of time to learn how, how to manage it and I’m lucky enough to say that at this moment in time I manage it fairly well and I’ve got a lot of support around me. I would hope that when I do have a fulltime job and have a career that I’m able to manage it so it doesn’t impact on that. But it wouldn’t be the first thing I would say. I wouldn’t be really, really upfront about it because it’s not actually, it’s not the most important thing about me and it’s not what would be the most important thing about me doing that job. 	
rob	What about you, Mark, if I threw the same question to you. 	
Mark	Well I haven’t got a choice there’s going to be no opportunity for me to cover up my mental health, you know, “What have you been doing for the past seven or eight years of your life?” “Well I’ve been a person who’s publicly spoken about their own mental health in a variety of different contexts.” 	
rob	Your reputation goes before you to some extent? 	
mark	Yeah to an extent my mental health goes before me as well. But the stuff that Hannah’s saying is really interesting because legally speaking, this is why it’s really important that we look at mental health difficulties as being disabilities and not individual problems, because really you should be able to talk about having a mental health difficulty with a potential employer because then they have a legal obligation to make reasonable adjustments. 	
rob	If they give you the job in the first place. 	
mark	Yeah but they’re not allowed to discriminate against you. 	
rob	But it’s very difficult to prove that somebody did discriminate you...	
mark	Absolutely of course.	
rob	…because you were honest about your mental health situation. 	
mark	Yeah they’re not going to say, “Yeah we did some legal discrimination against you, you're absolutely right, please take us to a tribunal.” You’re absolutely correct. But I think this is an area that we need to work on which is moving away from seeing mental health difficulties as being individual personal failings and looking at them as disabilities. And I think that’s something that a lot of people with mental health difficulties still have difficulty getting their head around because we all kind of think somehow that one day we’ll wake up in the morning and we’ll be fine and we’ll never be ill again. And that isn’t the situation for a lot of us with ongoing conditions, which for me, means that I think mental health, people with mental health difficulties can learn a hell of a lot from the previous struggles and the ongoing struggles of other people with disabilities and disabled people. And I think mental health has really lagged behind in that. Because we will kind of feel like it’s our fault that we’re ill. 	
rob	Well it’s a fascinating topic and we’d love to talk for longer.	
kate 	Yes thank you. 	
rob	But thank you so much to you both for coming in; Hannah Bilverstone and Mark Brown. 
[Jingle: Ouch, talking disability. We will never think of disability in the same way again. From Sebastian Coe’s closing ceremony speech. Tami, do you think that’s true? 
Tanni: I think it was absolutely, definitely true around the time of the Paralympics and I think people are more positive towards disabled people. But I guess when we see next year’s hate crime figures then we’ll have a better view of whether there’s been a real change or whether it’s been a moment in time.
bbc.co.uk/ouch]
William Mager joins us in the studio now. He’s a deaf filmmaker and he’s a producer right here at the BBC proving just how far and wide we will travel to get guests for this programme; it involved our producer, Damon, walking down the corridor! So the reason why we’ve got him in however is because he’s just had a cochlear implant and has been blogging about it. So hello to you, William.  	
william	Hello. It’s great to be here. 	
rob	And we should also explain very briefly that we’ve got Rob with us who’s William’s interpreter. Now just thinking first of all it might be a slightly odd question but William do you think that radio’s a good medium for deaf people; I would suggest maybe it isn’t? 	
william	Radio’s probably the worst possible medium for deaf people. I think most deaf people find radio sounds quite garbled that they can’t follow, including myself. I actually don’t have a radio in the home. 	
rob	And that’s the voice of Rob we’re hearing, by the way, not William. 	
kate	It’s great to have you here despite the fact that you’ve never listened to us before. 	
rob	With cause. 	
kate	With cause. Yes fair enough I suppose. So William is 35 and he was born into a hearing family in Sheffield. And though successful and happy William recently decided that a bit of hearing would be useful to him. So in November he underwent surgery to have cochlear implants fitted. Now, William, I am a little bit squeamish so can you, non-graphically, describe to me what happened during your surgery and just what exactly cochlear implants are? 	
william	Sure, okay. Well the surgery was a very straight forward operation. You go into an operating theatre they’ll give you a general anaesthetic. It feels great because you just feel very warm and comfortable and then before you know it you’re out like a light. In the operating theatre what they do is they cut into the inner ear, they make a small opening, they open up the skin and then what they have to do it dig a trough and that’s into the sole so they can put the device through. And what they do is they drill a hole and this hole actually goes through to the inner ear. And it actually goes between two very important nerves: one that controls your taste; and one that controls your facial expression. So they actually drill between those nerves and they’ll insert electrodes into the cochlear. Then they’ll test if it works, then they’ll stitch me back up and send me away again. But the funny thing is that when I had this operation the student nurse who came in with me the first thing I saw her was the face, the student nurse looked white as a sheet and when I woke up I said, “Are you okay?” And that was the first thing that I said. 	
kate	Oh my goodness. So you let somebody drill into your skull and into your brain! What? Why would anyone do that? 	
william	It doesn’t actually go into your brain, it goes to your inner ear. It is a very sensitive area and there are lots of risks involved. But when I woke up I felt fine, I was very happy. I could taste everything okay. They’d actually brought me a plate of fish & chips and that was the best fish & chips I’ve ever had in my life. 	
rob	And so you wait for a month after it’s been installed before it’s activated, is that right? 	
william	Yes that’s right. You have to actually give your body time to heal and that’s why they wait a month. And also you might have some kind of side effects like balance. I actually recovered quite quickly. The first week yeah I did feel some pain, I couldn’t really turn my head left or right and I couldn’t move my head that well. But after one week I would say I was feeling normal again. Going into the switch on that day I was feeling quite nervous, feeling very scared because it’s D-day, you know whether or not it was the right decision. 	
rob	This must have been an absolutely incredible day in your life. I just cannot imagine what must have been going through your mind. So is it right to say before the switch on you couldn’t hear anything at all? 	
william	Well that’s not quite true. Let me clarify. Before the switch on I was still wearing my hearing aids. I was wearing my hearing aids in my right ear and I could hear quite well with that hearing aid. But in the last two or three years I’ve noticed I’m becoming more deaf. I’ve always been profoundly deaf which meant my hearing was very limited but in the last two or three years I was losing a little bit more of that residual hearing that I had. And I was losing that bit of edge that was making me feel a bit more comfortable. So before that point I did have a hearing aid and when I went to the audiologist appointment I gave in my hearing aid, and she said, “Promise me you won’t wear it again.” And the reason for that is that it sounds so different when you compare it to what you can hear with your implants. 	
kate	So talk me through what happened when you went for the switch on. Was it suddenly like you could hear everything in the world? 	
william	For a lot of deaf people the switch on is the most disappointing day of their life. 	
kate	Wow!	
william	Every person that I’ve spoken to with an implant has said it was an awful experience. There are lots of videos that you can actually see on YouTube of their switch ons, you know children, young girls, young boys being switched on and a lot of them are actually crying. A lot of them smiled but then they’re just shocked by what they can hear maybe. It’s not sound it’s beeping but it doesn’t feel like sound, it feels like some kind of electronic trigger’s going on in your brain. 	
kate	I mean why would you put yourself through it then? 	
william	Well that was a question I was asking myself just after the switch on. Every day it got better. The beeping slowly resolved itself. It started to define itself more as sound like and then a week later they turned up the volume, they gave me the booster volume. Because in the first week what they do is they keep the sound level, the volume level of your implant low because on my switch on I went as a sheet, I was shaking, it was like having a really bad trip, some kind of really bad drug experience you know how it is. 	
rob	And so it’s been a month now has it really changed your life that much or is it something that you now possibly regret having done? 	
william	I think after a month it’s far too early for me to say what the long term impact would be on my life. I still think there are a lot of things that could be positive. Things are developing really well for me at the moment so like I’m starting to identify certain sounds. I can start recognising things without actually having to look at it. Before when I had a hearing aid I would have to look and check what that sound was in order to understand it whether it was an ambulance or a dog barking. Because with a hearing aid a lot of the sounds come across the same, whereas with an implant it’s more defined and you can distinguish the different sounds. 	
rob	Well we’ve got a little bit of a test for you here; we’re going to see just how well this new…	
william	Oh dear!	
rob	…cochlear implant does work. Right we’ve got a sound effect lined up and what we’re going to do it just play it and we’re going to see if you can recognise what we’re playing you. It’s quite a phenomenally huge noise so hopefully it won’t be too overwhelming. 	
kate	No clues, Rob, no clues come on. 	
rob	No further clues. Let’s have a listen and see if you can tell us what it is. [Big Ben chiming]	
william	Okay what I’m hearing is a period of silence and then I hear a loud pulse sound, and then it’s followed by another silence and then another loud pulse it’s kind of rhythmic. I have no idea what that could be.	
kate	Any clues if I said there’s some kind of relevance to what happened two days ago from when we’re recording this podcast. 	
rob	Today being January 3rd well at the time we’re recording this I should point out.	
william	It was Big Ben wasn’t it? The bing bong. 	
rob	He got it! Bingo!	
kate	Well done. 	
rob	It was indeed Big Ben.	
william	Hooray. Great. 	
rob	But it sounds like you…we obviously heard a huge great church bell, well not a church bell but we heard a huge great clock chiming the hour. You heard a pulse. So it sounds like what you heard was probably very different to what we heard. 	
william	Well to be honest I think what people have to understand about implants is it’s an electronic stimulus; they’re using electricity to stimulate your inner ear. So a lot of people will say, for the first few months the sensations are like pulses and then in about two or three months it could be that what you’re hearing is equivalent to normal sounds that you can hear. It doesn’t always happen that way. 	
kate	So I mean there’s a lot of controversy around cochlear implants amongst deaf people isn’t there? I mean I don’t 100% understand it because isn’t giving someone an aid to help them hear again isn’t that like giving somebody who can’t see as well glasses? 	
william	I think what you have to understand about the deaf community is that there are deaf people who have grown up not believing that deafness is a disability. They consider themselves to be part of a linguistic minority. So anyone trying to impose cochlear implants when they don’t feel that they need to be fixed they then feel oppressed, they feel like they’re then being forced to do something that they don’t want to do and they’re already comfortable as they are without their hearing. 	
kate	So I mean you yourself have a baby, if your baby was in the same position as you and they were growing up deaf would you encourage them to get an implant at a much younger age, say, three or four? 	
william	That’s one question that I’m still struggling with now because my son could become deaf later in life and if he starts to become deaf then there comes a time when we have to make a decision; should we give him an implant before he becomes deaf and I don’t know what the answer to that is. Because part of me going through that operation I know it’s invasive, I know there’s lots of risks attached to it, but at the same time you want to give your child the best in life and I would like to try and give my son both, you know, I’d like my son to be part of the deaf world even if he does or doesn’t have an implant. I even know a lot of deaf parents who have decided to give their deaf child an implant. And I know lots of deaf parents who have refused to give their deaf child an implant. And I can see the argument for both sides. 	
rob	And just finally, I don’t know whether enhanced is the right word, but since you’ve had the cochlear implant do you know have a favourite noise or a noise that particularly nauseates you? 	
william	One week after I was switched on I found one of my son’s wooden drumsticks. I was using this drumstick walking round the house and tapping it on different things and it was the first time I realised that when you tap on different surfaces you actually get a different frequency of sound. So I was walking around the house just tapping things with this wooden drumstick – tapping the windows, tapping the tables and it was the first time I really understood the differences. Because with the hearing aids they compress sounds to one sound actually. So with hearing aids all you can really distinguish is volume. And this is mainly because I am a profoundly deaf person and it’s difficult for me to discriminate between pitch. So this is the first time I’m experiencing different pitch sounds as I’m walking around the house. So I’m a long way from any of this being useful to me on a day-to-day basis because I’m still learning, I’m still defining what sounds are. So I have to relearn the sounds that I know that I’ve been familiar with over the past 30 odd years because what I’m hearing now is nothing like what I could hear before it’s much better now than what I could hear. But there is still a long way for me to go yet. 	
rob	Well it’s an absolutely fascinating journey and I know that William you’ve also written an article for us where you go into a bit more detail. And listeners can find this on our blog right now, it’s bbc.co.uk/ouch and that’s also where you’ll find a link to William’s personal blog where you can follow his progress. So, William and Rob, thank you so much for being with us today. 	
william	No problems. Thank you for having us. 
[Jingle: Ouch talking disability. If I say something funny biscuit as a tic then please laugh at it. Biscuit. I feels unnatural if people don’t. Biscuit. But there’s a big difference between laughing at someone because they move or do something in a different way, biscuit, and laughing because somebody’s talked about alien squirrels in chastity belts. Biscuit. Help! 
bbc.co.uk/ouch]	
kate	So 2012 was a monumental year for the UK and I surely don’t need to tell you why. But is 2013 going to therefore be a huge let down in comparison? Well on the menu this year we have…	
rob	Ooh what have we got? We’ve got 60 years since the Queen’s Coronation. 	
kate	100 years since the birth of Benjamin Britten. 	
rob	We’ve got Kate and William’s baby making an appearance probably around June time.	
kate	We’ve got PIP, the DLA replacement coming for some of us in April but lots of us now won’t be getting it until 2015 I think. 	
rob	And on TV ‘The Undateables’ and ‘The Last Leg’ are both coming back to Channel 4; and Liz Carr herself is in ‘Silent Witness’ from January 11th. [whispers] I give her six months. 	
kate	You are harsh. And the Paralympic World Championship Athletics in Lyon is happening this July. 	
rob	Now we’ve been asking you on Twitter and Facebook what you’re expecting to come out of 2013 from a disability point of view, but before we get to those we’ve been joined by a parliamentary lobby journalist Sean Dilley, formerly from that very well-known political station talkSPORT... 	
sean	You’re very harsh.	
rob	…to help us analyse this a bit. So how much time do you actually get to talk about politics on talkSPORT?	
sean	Well I was staff at talkSPORT for 11/12 years technically still freelance occasionally with them, but more than you would think because I know nothing about sport whatsoever. 	
rob	And would it be fair to say then that you’re not necessarily the most politically correct guest we’ve ever had on the show when it comes to talking about disability?	
sean	Well the problem is I was chatting about this out in the control room actually; that conjures up these terrible images of old racists and stuff, that’s not me at all. No I’m considerate to other people’s viewpoints, what I mean when I say I’m not that politically correct about disability is I’m not going to start getting the hump if somebody asks me if I watch Eastenders other than the fact that they would think I would lower myself to entertain myself with such drivel. 	
rob	So as a blind person you don’t mean being asked, “Oh wow you watch telly just like normal people do.”	
sean	No that’s it. 	
rob	You don’t mind questions like that?	
sean	No not at all. I mean I often amuse close friends, and I’m being deliberately flippant, it’s one of those things I think that we can kind of say ourselves in a way as when I talk about a blindy moment and it has people in fits of hysterics. But I find it, personally, I find it a way of brushing away maybe something that’s a bit embarrassing. And I’ll give you an example because it can go wrong as well; a very good friend of mine, quite a successful reporter as well TV-wise was with me one time at the Irish Embassy do, and they’re pretty good I’ll be honest with you, and I was offered a drink, I’d knocked a glass off and it smashed everywhere, and I think I said something like, “Oh excuse me, forgive the blindy moment, ladies and gentlemen.” And he said to me about six month later, he said well that’s a very good example of where you kind of separate yourself, not that I generally would or that he would say, you can kind of separate yourself from society more generally by joking sometimes so it’s a very fine line to cross. Gosh that was a long answer wasn’t it? 	
rob	We’ve got to admit though I do this myself, being visually impaired, it is quite nice to really be quite up front about it and see how embarrassed and awkward other people are. 	
sean	Yeah I mean everybody’s got a story haven’t they? 	
rob	That is quite nice. 	
kate	They have. I mean not to interrupt this blindy love-in, Sean, now we’ve been asking people what they’ve been looking forward to in 2013 and asking for responses on the Twitter and the Facebook, and I’m sure you won’t be surprised to hear that the majority of the tweets we’ve been getting back from people have been about benefits. Malcolm F Winter on Twitter predicts more cuts in mental health, fewer services and no media coverage of it. And Mandy Craven says “An increase in stress related disorders and poor mental health due to all the reforms in education, healthcare and benefits.” What do you think about people’s worries about the reforms to benefits and the like? 	
sean	Well they’re very real concerns aren’t they because the welfare budget is being slashed hugely already £14 billion with more on the way. I’ll address the first point about no media coverage; I would say as a journalist of sort of 14/15 years and I’m sure you guys will probably bear me up on this one, it’s actually not a question of a big media conspiracy that people don’t want to cover the stories. It’s just when it comes to programming a show or what you’re doing news bulletin-wise you’re kind of looking for something that you can cover that’s going to get general interest and it’s kind of an editorial decision you have to make to judge your audience. So it’s true it’s a very difficult thing to get coverage for possibly because it is so complicated and therein lies the difficulty that people have understanding benefits.  	
rob	Well we’ve got a clip here of disability minister, Esther McVey, announcing some of the details around the new PIP, the Personal Independence Payment system, back last month, so let’s take a listen to that maybe this might clear up a few things. 
[Playing clip: “But now the peak period of reassessments will not start until October 2015. This means we can learn from the early introduction of PIP, testing our process and making sure the assessment is working correctly before we embark on higher volumes. We will then consider the findings in our first independent review planned for 2014 and act on the findings. Importantly, unless people report a change in their condition those with a lifetime or indefinite DLA award will not be reassessed until October 2015 at the earliest.”]	
kate	So Sean despite your own admission that you have a visual impairment and you are disabled I understand that you choose not to claim DLA. 	
sean	Yeah. 	
kate	So these reforms aren’t going to affect you anyway? 	
sean	Well other reforms are going to affect me, let’s hope tax-wise it might even be better, it might be worse I don’t know. 	
kate	So what is it, why aren’t you claiming DLA?	
sean	For the reason actually Esther McVey, the disability minister, touched on there. It’s a very personal decision, can I just say to everybody I’m really a bit silly this is my own pride and my own sort of ego, to a degree, which isn’t a good thing – everybody, no matter what you earn you’re entitled to those benefits, we do have extra costs with taxis and stuff so do claim it, don’t do what I do because I’m an idiot. But for me I’ll tell you what it is: I always had very bad sight when I was a kid so in terms of like limited field and my sight in my right eye was three out of 36 on a snellen chart, if you understand that – you see that three yards what you see at 36. At the age of about 14 I lost anything functional, only aware of sensation of really bright light. But for me I think what it was is, I think I more or less ended up having to redo the forms every four years or so, I mean as I understood at the time that was something that would have changed as you got older for some bizarre reason. But for me it was quite complicated. For me I didn’t like that fact that effectively you have to beg. You know listening to the words of the disability minister, Esther McVey, although she’s a lovely person speaking there she says, “people with” listen to those words “a lifetime award for the disability living allowance won’t now be reassessed unless they inform of a change of circumstances until 2015” a lifetime award. Well it’s not really a lifetime award what we do is we get the DLA lifetime award right it’s over here, we think: oh right let’s go and reform things, we’ll rip those up and you have to come and beg us again. So frankly, for me, I take the attitude they can stick it.	
kate	I mean is filling out a form is that begging or is that just doing a bit of paperwork that you were just a bit too lazy to do? 	
sean	No because I tell you, for me it’s a very personal thing. About three/four years ago I was thinking well crikey I’m spending a heck of a lot of money on taxis and everything else I’ll do them, and I did the form and it’s shorter than it used to be, to be fair, it asks very personal questions, less so than it used to, and I got my references, I got my medical stuff all together and on the day that I actually went to post it I thought well do I really want to put myself back in that system. Now that’s a very stupid thing to decide to do. It’s not that I don’t want to be involved with the system at all so, for instance, I do claim blind person’s tax allowance which is if you’re registered blind with the local authority it’s a higher amount before you pay tax, it’s £1,000 extra something like that. And I do receive support through Access to Work. And I think the welfare system is there. But I just like the fact when I’m interviewing be it the Prime Minister or anybody else, I can, if you’ll forgive the expression, ‘look them in the eye’ at least as far as they’re concerned. And say, “Well no, if I’m quizzing you now about welfare it’s not out of self-interest.” 	
kate	Well do you think that anybody else who is claiming welfare then can’t quiz the Prime Minister and look them in the eye, is that what you’re saying…	
sean	Yeah they can. 	
kate	…that they can’t do that? 	
sean	They can do that. But, for me, it means that, for instance, if anybody does chall--…and people do it informally, it’s this kind of underlying sort of secondary discrimination you get in a way. Say, for example, if I rigorously interviewed Ian Duncan Smith and attacked the welfare reforms it would be very easy for anybody to say, “Well that’s very well you’re just feathering your own nest.” It’s silly it doesn’t mean you can’t do it. So, for instance, Gary O’Donoghue, the excellent BBC Political Correspondent who’s also blind, he could do exactly the same. I don’t know what his own circumstances are in terms of what he does and doesn’t claim. So yes you can do it. It is a very odd personal decision I choose not to. I’m very fortunate because I really do work my backside off, I’m not a very wealthy rich person or anything, but I don’t tend to struggle to pay the bills these days in the way that I might have in the past. 	
rob	You are opening up a whole new window of disability for me here. I’m starting to think we’re always reading in the right wing media about lazy, benefit scroungers, I’m wondering if there are now people who are too lazy to even fill out the forms in the first place. 	
sean	Oh no I see what you’re saying. No it’s not laziness. Well no you think about it last time I was claiming it because it was a lower rate before I think when I was last claiming it it was about £230 a month or something, it’s now well over £300 I think for my circumstances. So if it were a question of, no of course it’s not laziness it’s quite a bit of money, but it’s just a very personal decision. 	
rob	Well let’s go back to some of the tweets we’ve been getting about predictions for 2013 or two, zero, one, three as nobody calls it. And we’ve had a tweet from GB deaf woman’s football who says, “You ought to see GB deaf athletes do our country proud at the Deaflympics in 2013 by adding gold medals to our already rather vast collection.” And Oliver James Gardener says, “With the popularity of the Paralympics I predict we’ll soon see a trickledown effect into business with a new focus on para-entrepreneurs.” That’s a bit of a portmanteau isn’t it? 	
sean	It is yeah. 	
rob	So during the Paralympics a lot of hyperbole was spoken about disabled people; Sean, is a fresh positive attitude being taken into 2013? I mean we’ve heard these…I personally think rather dreadful slogans saying it’s now cool to be disabled, I don’t know if that’s something you concur with?	
sean	I want to eat my own face when I hear that. 	
KATE	I’m cool. 	
sean	You’re cool? 	
kate	Yes.	
rob	Because you’re disabled for no other reason, Kate.	
kate	Yes.	
sean	What’s cool?	
rob	For no other reason Kate. 	
kate	I mean look at me, I mean I’m pretty damn cool anyway but my disability…	
rob	Well you are wearing a jumper with an owl on it. 	
kate	Exactly. This is the height of cool.	
rob	That’s ironic. 	
kate	Super cool. 	
rob	Listeners, she’s wearing a jumper which I’ve got to say it’s not cool at all. 	
kate	It’s beautiful, it’s absolutely beautiful. But no I think my disability makes me that extra level of cool. 	
rob	Don’t you want to be cool for something else though? 	
kate	I am, I’m cool for everything. But…	
sean	No, come on. 	
kate	When I’m whizzing around in my purple wheelchair I am the height of cool. 	
rob	Go on then Sean. 	
sean	But that’s because it’s a flashy wheelchair that’s purple I’m assuming. 	
kate	Yeah.	
sean	I mean, okay, it’s good that people can be positive about it, I’m very hard to offend. But I was doing a debate actually on Sky News by way of a round table thing during the Paralympic closing ceremony and it was outside Buckingham Palace, and there was a fella who said on it – I won’t name him actually because it would be a bit unfair – who quoted the piece in The Times that you refer to ‘It’s now cool to be disabled’ and I kind of jumped in there and said, “Not to sound like a bitter blind or anything but it’s not cool. Okay you live life, you crack on it’s not cool that I can’t drive, it’s absolutely not cool that I can’t do things that everybody else might happen to do in life but you find your way around it.” For me, and I don’t know I would imagine the majority of listeners would agree, why must we have disabled community and the community is it not just one community? And why must we have the Paralympics down the line? I mean this is a, you know, call me a dreamer if you will, but the idea of…	
rob	What do you think Kate though? 	
kate	Well I mean I completely agree that I’d like us all to be one big community but that’s far from happening. And anything that makes my disability seem cool, seem like not a terrible thing I think is a good thing. And I like it that people would think I’m actually quite cool because I use a wheelchair. I’d like people to be jealous of me because I skip the queues at Disneyland. 	
rob	The fact that you're doing to Disneyland at 29 makes you inherently uncool, Kate.	
KATE	Cool, Rob, you don’t understand.	
sean	I’m slightly older but that queuing thing that’s interesting, I digress just a little bit, so here’s the cul-de-sac I’m walking down now; I went for the first time since childhood to Chessington and Thorpe Park recently. 	
rob	Oh God this is the most uncool discussion we’ve ever had.	
kate	Awesome! This is totally awesome. 	
sean	No this is totally cool actually. This is pretty cool. My lovely fiancée, Siobhan, had said, “We can queue jump.” I said, “I don’t really want to queue jump” I must admit spending the first day queuing for an hour here or there I thought alright, okay. 	
kate	Yeah. Take the benefits there are so few benefits to being disabled, take them where you can get them. 	
sean	But there’s no benefit here, this is where I’m getting at. So we go in there and they give us this wrist band and it’s fantastic you go on all the rides, it’s brilliant. But they said, “The only thing is we won’t do that in future because you need a letter not only to say that you can’t see, but you can’t mentally understand the concept of queuing.” Of course we can, we’re not stupid, but by the same token how easy is it when you’ve got people walking into you to sort of tutting because you're going about the place bumping into fences for an hour and a half we kind of get to this situation…	
kate	I mean that’s just levels of bureaucracy isn’t it and hoops that we always have to jump through. But isn’t it good to be positive about this stuff?	
sean	I agree. It’s good to be entirely positive but I do like the idea that one can be sort of part of community generally. And this is something I bang on about a lot. I didn’t used to do many interviews about blindness or disability, and I still don’t do a lot of them, but the reason is because I’m a political journalist, I’m a broadcaster, current affairs and that sort of thing and more recently, that last few years I’ve been dabbling in print journalism and all the rest of it. I want people to read something that I’ve written or see me reviewing papers on BBC News, which for a blind person is quite a feat in itself. And say, “Well actually yeah that’s interesting, that’s an interesting point that you make there as a journalist.” I don’t want them to say, “Ah look at that poor blind…ah isn’t he doing well.” 	
rob	Or after the Paralympics you just think who’s that show-off probably winning something as usual. 	
sean	Yeah exactly. And saying, “Give me some medals or I’m going to throw a strop!”	
rob	Talking of hissy fits…yes. 	
KATE	Talking of the Paralympics and controversy what did you think of David Weir’s comments on the number of honours given to Paralympians being disappointing in comparison to the amount of honours that were given to the mainstream Olympians? 	
sean	There’s a bigger question about honours which we’ll park for one second. You can’t demand honours, it’s a bit unseemly you know. It’s, whether we like it or not, I think the Paralympics were fantastic and actually it was much more accepted by the community generally than I could ever have hoped for so I’m very pleased about that. But nevertheless it isn’t the mainstream Olympics. As I say I’ve got a bit of a dream where one day you could enter the Olympics and there might be some kind of adaptation where it’s necessary, that’s my idea less segregation. However, it’s not quite as well known, quite as historic, quite as popular. And so I think really to demand honours and to sulk when they don’t happen it kind of detracts a little bit from the very positive messages that were out there. 	
rob	And what do you want a CBE for when you’ve got an Olympic gold? As far as I’m concerned if I’ve got a gold Olympic medal a CBE is like a Blue Peter badge in comparison, I have no interest. 	
kate	If I ever win a gold medal I want to be Sir Kate, no. 	
sean	You want to be Sir Kate?	
rob	You want to be Sir Kate.	
sean	It can be arranged.	
rob	That will involve surgery. 	
kate	Okay what’s the equivalent for girls?	
rob	Dame. 	
sean	Dame.	
kate	Oh no I don’t want to be a Dame though…	
sean	Why not? 	
kate	…that’s not as cool. 	
sean	You see you’re such a diva. 	
kate	I know. 	
sean	Such a diva. 	
kate	I want to be…	
rob	We’ll just call you that then; Diva Kate.	
KATE	Can I be a knight? Knight Kate. 	
sean	A knight, no. 	
KATE	No? Fine. Fine. 	
rob	While we go and get Diva Kate another lobster thermidor and large cognac we’ll say, actually you can get them for us when you leave. So thanks very much for coming in.	
sean	Shall I stop massaging the scalp now?	
rob	Please yeah. 	
sean	Right, okay. 	
kate	No, never, never finish. 	
rob	It’s starting to wear me down. Well thank you very much for coming in, Sean. 	
sean	Pleasure. 	
rob	Have a wonderful 2013 yourself.	
sean	Will do, thank you. 	
kate	And that, podcast fans, I’m afraid is the end of the programme. Thanks to Emma Tracey and studio manager, Philip Ashley, and the producer was Damon Rose. 	
rob	And thanks to you as well, Kate…	
kate	Thank you. 	
rob	…it’s been a pleasure, treasure. So we’ll be back in February, hopefully with Liz Carr who’ll have been seen by the nation - oh do we have to mention ‘Silent Witness’ again? It’s time for me to go [ripping paper] like that with the script and until then it’s goodbye. 	
kate	Goodbye.