'ATTITUDE' THEME TUNE www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2013 MAN: Well, good morning, Waipu. If you've just come over the Brynderwyns and are wondering what the awesome sounds are, well, you're tuned to Radio Waves, right here on 105.6FM. If you're a farmer, you'll be enjoying the day. If you're talking Kiwis with initiative and get-up-and-go, then you need to add Ashley Worthy to your list. FUNKY MUSIC PLAYS Ashley's little green caravan and his big green tractor is part of the fabric of Waipu. Growing up in Waipu, it's an awesome little town to grow up in. Everyone knows each other, and everyone knows who I am. Ashley's always done what makes him happy. If that means driving his tractor to town, then so be it. Local music for local people, made by locals, here at Radio Waves Waipu. I'd like to make the radio a paying entity so I can become more independent and, you know, I can get paid for doing something I love. That'd be the ultimate goal, really. ALARM PLAYS MUSIC Every morning begins the same for Ashley ` two painful hours of changing bandages. Ashley lives with a rare skin condition most people have never heard of, and certainly couldn't comprehend. It's called epidermolysis bullosa, or EB. Ashley's skin blisters and tears at the slightest touch. It's as fragile at wet tissue paper. There is no cure. At the end of the day, I can sit down and cry about the things I can't do, which would be a hell of a lot, or I can just really enjoy the things I can do, so that's what I do. Neighbour Heather Shields changes his bandages every morning. Hi, Ash! She's been doing this for 20 years. Ashley-ley. Hi, Ash. How you going? Yeah, going good. Yeah, going good. Good. Sometimes it's not that much fun. Well, actually, all the time it's not fun. But, um, we get through it. I guess it's a bit like getting up, brushing your teeth, washing your hair, except I have to do two hours of it. Ooh, blisters. Ooh, blisters. < Oh, good (!) The slightest bump will result in a blister, which could last for weeks. So, I'm basically just opening the blisters so they don't spread. Because if they grow, then I lose more skin. So the quicker you can open them, the, um... Because if you leave the blisters, they will just continuously fill up with fluid and grow, and, 'course, if you leave them and they get to a size and then you pop them, then, obviously, you've got a larger` then, obviously, you've got a larger` It'll take longer to heal. Yeah. You've got a larger area to look after. Um, so, even swallowing, I get blisters. Ends up scarring and all of that. What you see on the outside is also internal as well, so that's where diet and stuff like that play a huge part. But anywhere, I guess, that's covered in skin. Exactly, which is basically all of us. Because I use my hands quite a lot, um, they scar up. So when they blister, the skin heals again; blister, skin heals. And it just gets scarred and scarred. So I have had, over the years, quite a few operations. When I have surgery, I can't use my hand for` Six weeks at least. Six weeks at least. ...probably six weeks, yeah. Even longer. So two months of your life where you can't use your hand, then if it gets too bad, then you don't have a hand, so swings and roundabouts. (CHUCKLES) Thankfully, I say, I've had it from birth. Because I would hate to have to go from just being` not having a disability to having it. I mean, that seems to me one of the worst things I could think of. But, um, I've always had it, so it's difficult to... really difficult to put a finger on it. Guess if you wanted to know, use a cheese grater. (CHUCKLES) OK, there you go, Ash. Think you're good to go. All right, you have a lovely day, and I'll see you in the morning, and we'll do a shower, yeah? Awesome, cheers, Heath'. Awesome, cheers, Heath'. Fantastic. Oh, well, that's the neat thing about the radio station, is when I'm sore and when I'm tired I can take a break. But also, when I'm well and when I'm feeling good, I really have to get stuck in and do stuff. ROCK MUSIC Home is a bachelor pad 50m away from his parents' house ` just enough distance to give him independence, yet close enough to call on their support when it's needed. How did we get on with the man who dropped off the CDs? How did we get on with the man who dropped off the CDs? Uh, yeah, I gave that to Fiona. Yeah. Ashley's mum, Kathy, serves as the radio station's PA. I used to go up to a local radio station that was in Waipu with my friends, and we'd do a radio show up there. Then the people who owned the radio station decided that they were gonna move on, and they helped me start up my own small station. It's given him a reason to get up in the morning. It's given him something to get his teeth into. It's given him a challenge. He gets out of bed and he thinks, 'Right, what am I gonna do today, radio station-wise?' After six years' experience running Radio Waves, Ashley's got big plans. It started off as a hobby, but then I kind of thought, 'Well, why couldn't it be something bigger?' Why couldn't it be something that is useful? I mean, i-it's good fun, and we have lots of people that are involved and enjoy it, so, I mean, yeah, I guess we'll just see how far we can go until it stops us. (CHUCKLES) What he needs is a bigger audience, to sell ads and to pay himself a wage. If you're at the Waipu Markets this Sunday, then you'll see us there. We're doing a bit of a survey, finding out what we can do to improve things, so if you see one of our DJs around, have a chat, let them know what you think. Ashley's off to the Waipu Market Day for some audience research. If he wants more advertising, he needs more listeners, and the secret to that is finding out why more locals aren't tuning in. How you going, Cindy? How are you? How you going, Cindy? How are you? Very good, thank you, lovey. How you going, Cindy? How are you? Very good, thank you, lovey. Cool, cool. How's it going? How's it going? Good. How are you, Ash? How's it going? Good. How are you, Ash? Yeah, good, good. I'll see if you'd like to participate in our survey for our station. OK. We're just asking people if they've heard of us` We're just asking people if they've heard of us` Yep. Yep, cool. And then do you know our frequency? And then do you know our frequency? I don't know it, but our radio's tuned to it. < My husband leaves it on all the time. He likes the fact that there's not many ads. No ads? No ads? < Yeah. No ads, not too much talking. That could be difficult, seeing as how we're trying to make some money. That could be difficult, seeing as how we're trying to make some money. < I know. At least` Limited ads. Thank you. Thank you. You're welcome. Good luck. See ya. So, first of all, have you heard of us? Your...? Your...? ...radio station. You know of us? No. Are you on the air all the time or just certain times? Uh, all the time, touch wood. < Can you remember our frequency? Yeah. 105.6. ALL CHUCKLE So they know. Are you aware we have a local radio station? Are you aware we have a local radio station? I am, yes. You are? Good. That's great news. Um, do you listen to us? You are? Good. That's great news. Um, do you listen to us? No. (CHUCKLES) That's sad. That's sad. Yes. That went pretty good. That went pretty good. Yeah, it went well, mate. I thought so. And, um, well, the interesting thing is that most people have heard of us, but not many people know our frequency. but not many people know our frequency. No. That's what I found too, Ash. They know about us. They don't know where we are. A lot of people can't get us, though. That's kind of confirmed what we thought, but` Yeah, yeah. Yeah, yeah. ...now we, kind of, know it a bit more. Ashley's realised not enough people can get his station with his current transmitter. To have any hope of getting a bigger audience, the little green caravan is going to need a bigger aerial. Our next goal is to be able to get out to everyone in the Bream Bay area, and all of that. So hopefully then we'll be able to bring a bit of income in to pay for itself and be self-sufficient, and hopefully make a bit of money for myself as well. Ash, I heard that we're getting a bigger aerial, which is exciting. Is that fact? Fiction? Yeah, no, we're in the process of doing that. Hopefully in the next couple of months we'll have that up and going. So what radius will that give us once its up? Hopefully we'll get all of Bream Bay. > Hopefully we'll get all of Bream Bay. > Oh, cool. Wow. What does this involve? It's just another transmitter and a battery pack and solar panels and all of that. Ashley needs to raise money for a more powerful transmitter. And he wants to do it through his own efforts. Ultimately, we're looking at doing a kids' programme on a Sunday morning. Ultimately, we're looking at doing a kids' programme on a Sunday morning. Yeah. We wanna go through all these records. < What say I give you the ones for the kids' programme? Kermit and Miss Piggy. Having my disability has made me quite fiercely independent. But I'm on the invalids' benefit at the moment, and my goal is to get off that as quickly as possible. I just don't like to be a burden to anyone. He's always wanted the radio station to stand on its own two feet, and Ash has never wanted his disability to be the reason for it. One thing about living in the disability lane, people are really giving, and he's had offers to help him make the strides quicker. But, you know, it's really neat to feel that he's done well because it's a great product and it's done well from your hard work. It's a real juggling act between having people help you and doing what you can do for yourself. And this is something Ash can do. This is Ash's baby. The Radio Waves Annual Pickle Off 2013. The coveted title of Radio Waves Waipu Pickle King or Queen is once again up for grabs. Now, the categories are pickles, chutneys and sauces. There was a lot of interest in this, Ashley, in the community. So Ash and Nath are gonna do an ad for Facebook? Uh, yeah, we can do all that. > Uh, yeah, we can do all that. > Fantastic. OK, we've got this Pickle Off thing happening, so I thought what we could do is write a track up, a thing for the DJs to read. Good to see you showered before coming off the farm. Pleased you're impressed. So, we wanna come up with an ad for the DJs to read for us to be able to record and then put on out there, so I'm thinking, 'Get pickled at Radio Waves Pickle Off.' You spelt 'pickled' wrong. You spelt 'pickled' wrong. Probably. You bought yours last year, so I was told. Your beetroot chutney, straight off the supermarket shelf. We generally just sit here watching television until someone sees something on an ad on TV that we might be able to pirate slightly and put on to the radio without anyone knowing. (CHUCKLES) The Radio Waves Annual Pickle Off is here again. The coveted title of Radio Waves Waipu's Pickle King or Queen is once again up for grabs. Happy? Happy? Yep. WOMAN: It's ladies' night. This is my hour and I'm in control, and this is what I'm playing tonight. FUNKY MUSIC PLAYS Good work. Good work. Thank you, Ashley. I'm now obsolete. (CHUCKLES) (CHUCKLES) You were ages ago. No! (LAUGHS) No! (LAUGHS) ALL LAUGH As well as part-time nurse, PA and EB expert, once a week Ashley's mum also becomes a radio DJ. 27 years ago, EB was pretty much unheard of. It was a matter of finding our own way. You learnt very quickly what you could and could not do with Ash's skin. You know, they say it takes a community to raise a child, and I'm so sure of that. Thank you for the texts. It always makes our day when you text in and tell us that we're not doing such a bad job. Once again, it's been a pleasure to have you. Thank you for tuning in to Radio Waves 105.6FM. Start with leg? OK. Let's have a look at that leg and see what's happening. OK. EB's a complex condition. Over 300 genetic mutations have been associated with it. Ashley's form is the most severe. How's that? How's that? Today's actually` No, it's looking all good, Ash. Awesome. Awesome. Can't see any blister. How's it underneath? All good? Tell you what, we'll just put a little bit of cream... As a complication of the chronic skin damage, people living with EB also have a greatly increased risk of skin cancer. On days like this, it's pretty good. And we have days when you have to have a bit of medication just so you can` a bit of pain relief, just so you can get through. Yeah, a few paracetamol, something like that. Yep. Yeah, a few paracetamol, something like that. Yep. Stuff like that. Today Ashley's nursing an ugly blister on his knee, the consequence of a simple bump. Well, this` my knee here I did when I was climbing into my car. I, um, was a bit quick and ended up whacking it, so that's how that happened. It only takes a split second for it to become damaged. > And when we've got open wounds like that, that always leaves Ash really susceptible to infection, and things can go from bad to worse pretty quick. I get blisters in my eyes and stuff if I'm not careful, so need to be careful when I'm out and about. Like, on the bulldozer or on the tractor I need to wear eye protection. I've got my independence and I've got my own place, so my little house where all my mates can come and we can hang out. But it's still good to have Mum and Dad close. So it's almost a bit like a panic button. (CHUCKLES) Kind of gotten used to dealing with it. I guess it just makes cooking a little bit more messier sometimes. I wouldn't say I'm a master chef, but I know how to cook a piece of toast. So, yeah, won't go hungry. I have to chew it quite a lot, because I can get blisters on my mouth, and I can... Yeah, if it's sharp and stuff, it can scratch my throat. But as long as I'm careful and I take my time eating, it's, um, OK. His determination to be independent has led to some harsh decisions. I wanted to learn to drive and that, but I had a really badly damaged foot due to my condition, so I couldn't drive. I couldn't press the clutch or anything. So he had his foot amputated because it was the only way he'd be able to learn to drive. He was just 15. Whereas most teenage boys get to race around, enjoy the rough and tumble and get in the odd bit of trouble, Ashley was pretty restricted. He does, however, have a thirst for action and adventure. His thrills come in the form of rockets. It, um, started off when I was younger, and progressively growing into more and more bigger rockets, I guess. A bit like Guy Fawkes sometimes. Which one do you wanna go first? Which one do you wanna go first? Um... Which one do you wanna go first? Um... The biggest one? We all went to primary school together. We all went to primary school together. Yeah. That's how we met. We spend a lot of time together and do a lot of neat things together. Yeah, we've been very close. Sometimes it all goes wrong, and when it does, usually it's pretty exciting. Um, we had a few technical issues here and there. Three, two, one! Please work. Oh shit. No. Two, one... < (GROANS) < Oh, it's not going. It's not going! It's not going! ALL LAUGH < All right? OK! Three, two, one... Please work. ALL LAUGH WILDLY Oh, you're gonna wreck it! Stop shaking` (LAUGHS) Oh G` My life here in NZ is amazing because growing up here, we've never really prescribed to any set rules, we've just gone and done it. Doesn't matter who you are, if you don't have a positive attitude, it may be a bit more difficult. Good morning, Waipu. You're listening to Radio Waves, and I'm here today with Jacqui from DEBRA NZ. Jacqui is one of the nurses that is paid to head round and check out people with my skin condition. Now, Jacqui, I was gonna ask you, how many in NZ now do we have that are my severity? We have about five people in NZ with the severe type like yourself, Ash. We have about five people in NZ with the severe type like yourself, Ash. So not many. Not many. The type of EB that you have is from` what we call recessive dystrophic EB, which means that prior to your birth, your parents wouldn't have known that they were carriers. So we won Lotto, you can say (!) So we won Lotto, you can say (!) You could say that. There's a lot of people out there now who have lived to a good age with the severity of my condition, but there's also been a lot of people who have passed away because of it, so I guess it's here nor there on your odds. It just seems to be luck of the draw, and good management seems to be a part of it. People, I think, they think cos you live with a disability ` and, you know, Ash's condition is horrid; there's no other way around it, it's one of the nasty ones ` and people, sort of, think, 'How can you keep, I suppose, your chin up?' and that. But Ash's sense of humour has got us all through it. MAN: It's all go here at Radio Waves with the annual Radio Waves Pickle Off. Competition is dog eat dog, or people eat pickle, or something, out there. The Great Waipu Pickle Off is the culmination of months of fund-raising for Radio Waves' new transmitter. All right, welcome to the second annual Pickle Off competition. As you can see, we have pickles, chutneys and sauces on the tables. Grab a scorecard and then make your way round and help yourselves. Um, we're judging them 10 being fabulous, and one being 'feeding to the pig'. ALL LAUGH Ash, what's the money going towards for the auction? We'll be putting it towards our new transmitter so we can take over Ruakaka. WOMEN: Yeah! (CHEER) Let's get started. < Are you using your fingers? No. ALL CHATTER, LAUGH We do a show on Friday nights, uh, 6 till 7. We do a show on Friday nights, uh, 6 till 7. 6 till 7. And it's more, like` And it's more, like` Modern stuff. And it's more, like` Modern stuff. ...modern stuff. I do Professor Worzel Sunday session every Sunday afternoon here on Radio Waves. It's the show that calms troubled minds, warms the coldest hearts, and where your wildest dreams can come true. All right, hopefully you've had enough pickle to last you for a year. < More than. And the winner... Annelise. CHEERING, APPLAUSE (SPEAKS INDISTINCTLY) Now Ashley's got a captive audience, he's going to hit them in the pocket to boost the funds for his new aerial. 13. 13. 12. Going once. 16! > PEOPLE SHOUT 20 bucks. 20 bucks. 20 bucks. There you go. Once, twice, sold to Rangi. 20 bucks. Even being in a wheelchair sometimes, people think that you should be down about your life so some people feel like they can have a great commiseration with you, or have a, you know, good talk about how bad their life is. And I'm, like, 'Well, actually, I don't really see it that way.' (CHUCKLES) I'm quite happy with how my life is, surprisingly. It's really hard to take Ash` feel sorry for Ash when he's on a roll. (CHUCKLES) You know? He doesn't really, um, reflect 'poor little disabled boy'. Well, we have a new aerial that is being built for us here at Radio Waves. Six months later, Ashley's got the cash for the new transmitter. Hopefully we're gonna be able to get a lot more coverage, get a lot more listeners. Um, take over the world, I say. ROCK MUSIC It's been a long process ` couple of years ` and lots of fundraising, and hopefully it's going to get us out around Bream Bay, so it's kind of finally happening, so... exciting. He's had a bit of help from a local expert. Malcolm Hay is in his 90s now, but in his time he set up a series of radio stations throughout Northland. Malcolm's installing the electrics and all the electronic parts for us, so hopefully he knows what he's doing because, yeah, it's not really my field of expertise. This is probably one of the last ones we'll build because, um, I think FM's pretty well covered, and there's not too many private stations. We are a tiny, tiny transmitter, but we're up so high that we don't need hardly any power to get a long way. Look at that. Easy. Yeah, it's not a cheap exercise, but it's all come together really well. Awesome. It's just like a bought one. (CHUCKLES) Basically, the transmitter set-up is` The key to it all, I think, is that it's such an amazing spot right in the centre, and it's pretty much the highest spot for miles and miles and miles around. We don't need much power at all to be able to cover a huge amount of area. Don't kill yourself until the bolts are tightened up. Don't kill yourself until the bolts are tightened up. MAN CHUCKLES It's a bit wobbly. Not too far in. The top one's the transmit aerial, and the bottom one's the receive aerial. The top one to Taka, the bottom one to Waipu. Now we just need to hook it all up and turn it on. Be a hell of a lot more coverage than we've got already, so either way, we win. STATIC MUSIC PLAYS STATIC STATIC It'll work. All right, Ashley? All right, Ashley? Yeah. Everybody got their set-up? Everybody got their set-up? Fingers crossed. (CHUCKLES) Everybody got their set-up? Fingers crossed. (CHUCKLES) Everything crossed. Right. Here we go, we're on air. Right. Here we go, we're on air. MUSIC PLAYS ON CAR RADIO Right. Here we go, we're on air. MUSIC PLAYS ON CAR RADIO Awesome! (CHUCKLES) MUSIC CONTINUES That is really clear. It's working a thousand times better than I expected, so... very cool. Welcome, welcome, all of those new listeners out there. There you go, Ruakaka and One Tree Point, welcome on board. These hills usually cut us out, but we're getting it quite clearly. RADIO: # Why don't we just say # ain't gonna change things? # We can get a hell of a lot more coverage and a heap more listeners and, yeah, then we can actually provide something to the community. That's definitely outdone my expectations. Can pick you up loud and clear at the cove. Whoo-hoo! (LAUGHS) Yeah, and talk louder. You need to speak a lot louder into it. Bossy boy. Who knows what I'd be doing if I didn't have it, but also it's made me very, I guess, ambitious to do the things I can do when I can do them. So, I mean, yeah, it's definitely made me, um, appreciate what I have, really. And be, I guess, motivated to do what I can when I can, because who knows what the future holds? At the end of the day, you could be hit by a bus tomorrow, so may as well live life to the fullest. I've always been told, 'You're not gonna live for too much longer.' I've not really planned for too much longer, so I didn't really think of what the next step could be. It was just the fact that Ryan said, 'We're moving out,' so I said, 'OK.' They may be in their early 20s, but brothers Blake and Ryan Leitch have always lived at home ` until now. The boys are going flatting. I'd, kind of, gotten to the age where I'd had enough of living at home. Here is my room,... which is nice and... all mine. The Sixth Annual Attitude Awards are now just over a week away. We're here to celebrate the achievements and the contributions of some of the 17% of NZers who live with disability. 23 finalists across seven categories have been chosen. This year we've added something new. Go to Attitude Live to vote for your favourite finalist in the People's Choice Award. Captions by Tracey Dawson. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2013