Seeking new challenges with Cerebral Palsy (Being Me: Nikayla)

* (EXCITING MUSIC) – Whoo! I can’t believe I’m about to jump out of a plane. This is not your average day, let alone when you live with cerebral palsy. A few years ago, I could never have imagined myself taking a trip like this, and I definitely, definitely didn’t think I’d be seeing the sights from this angle. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2020 (REFLECTIVE MUSIC) I’m Nikayla Wood, and I am 23. I have athetoid cerebral palsy, which affects all my motor skills and my speech. I’m in a wheelchair full-time. I have a manual and powerchair. These are my words, but this isn’t my real voice. It can be hard for people to understand what I’m trying to say. I come from Rerewhakaaitu. It’s a small rural community 40 minutes south of Rotorua where I live with my parents. We’re a pretty typical country family.

I’m Kristina, and I’m Nikayla’s mother. – And I’m Gary, Nikayla’s father. – Come on. We haven’t always lived out here. When we first got together, we bought a house in Mamaku, and we were up there for a couple of years, and I fell pregnant with Nikayla. Always had the plan that I’d go back to work when she was 6 months and all that sort of stuff, but at 9 months, she was diagnosed with having cerebral palsy. – She enjoys it out here, I think. I don’t think town life would suit her as much. She gets around in her electric chair. We take it down to the lake, and she used to hoon around in that in the sand, and… It’s amazing where that thing will go. When we’re doing hay out here, she’ll jump on the chair and start pushing the bales around and clump them up to make it easier for us to pick up. – I think it’d just be easier if we did live in town, because of caregivers. The distance does put people off, and you have more available.

We just felt that, ‘This is the one thing’ — that we wanted to live rurally, and so, ‘That’s what we’re gonna do, ‘and we’re just gonna have to make it work.’ – (BIRDS TWITTER) – As a kid growing up in Rerewhakaaitu, it was fun. I was outside all day, making tracks in the trees and building huts, playing silly games with my family, helping mum with the animals… I liked to get involved in anything I could. But somehow, as I got older, things started to shut down for me a bit. I found the first year after leaving school the most difficult time of my life so far. I got very down and became really unmotivated. I can’t speak very well. My hands don’t work. What was I gonna do for the rest of my life? That’s when I met Deena. – The trip out to Nik’s is 40 minutes to 45 minutes depending on traffic, um, maybe, stock on the road, (CHUCKLES) black ice, fog — whatever comes your way. To be fair, driving doesn’t bother me. I quite like driving. I zone out, listen to my music. I usually have the music cranked full bore. So for me, it’s a bit of my time, actually. – Deena started working with me about 18 months ago. – Hey, Nik! – MUFFLED: Hi! – (DOOR OPENS) – Morning. – Hey. – All right. Get your teeth done?

Yeah. – And then we’ll get you some clothes. – Deena helps me with all my personal cares — getting dressed, eating, going to the toilet and so on. – Drink. Drink. – Yep, drink. – She’s always there to help me with any issues and helps me come up with a solution. – Wash it down. – Sometimes I just need to have a rant and a vent, and she’s there to listen. – Right. What d’you wanna wear? Blouse? – Yeah. And a… cardi. – Cardi, yeah. – And what… ever… pants. – Whatever pants. OK. This one? – Yeah. – Yep? That’s nice. – That… one… is… more… …cosy. – ‘Initially when you do first start working with Nik, the speech, ‘you’ve gotta really tune into it.’ – Yeah. – That one? ‘She’s got lots to say. She’s just so delightful.’ But initially, I was only getting about half of what she was saying. That was really, really difficult. – Yeah. – Happy with those? ‘I found that if I faced her and she’s talking to me and I can look at her mouth, ‘then I could understand her a lot better.’ That colour’s comin’ out a bit, eh? – Yeah. – (SPRAY HISSES)

Sorry, Nik. ‘It’s great. We have a really good relationship. ‘She’s got a brilliant sense of humour,’ and I can be a bit of a dick, so both of us, we work really well together. Funky as always. – (BOTH CHUCKLE) – ‘Nik’s outgoing. She’s positive.’ All right, zhuzh the fringe. ‘She is quite an inspiring young lady. ‘And for me, that grin…’ Looking good. When she grins, it just lights up a room. – Deena really got me thinking differently. She sat me down and asked me, what did I want to achieve? Then we made a list. Thank you. Deena fired me into life, and we began to work our way through the list. Sometimes, you’ve just got to put on your big-girl pants. – I basically said to Nik, ‘What do you wanna achieve out of this partnership between you and I? ‘And we’ll just hit your targets.’ The first thing she wanted to do was swimming, which I think was quite hard basket. And I said, ‘Whatever you wanna do, we’ll make it work.’

And we did. OK. Floating, just floating. Nice push. You’re gettin’ good distance out of that, aren’t you? – Yeah. I was really nervous about starting to swim, and a little… well, no, OK — a lot frightened to start. Yeah. After about two months, I was becoming less and less anxious and I was gaining more and more confidence. Yeah. – Good shrug. Good shrug up to the ear. – Every month, I got better and better. When I’m swimming, I feel free, and I find it relaxing. Now that I’ve met this goal, I’m starting to set new ones. – (BEEP!) – One. Two. – (GRUNTS) – Three. – I had a little taste test of boxing with someone who was doing chair boxing, and I really enjoyed it. From there, I haven’t looked back. – Seven. Eight. Nine. – 10. Right uppercut, left hook. – DEENA: I think Nik was ready to start a new voyage and a new chapter and really try new things. – One! Two! – DEENA: I’m a bit of a go-get-’em sort of person, so with a bit of encouragement from me, she’s really, really pushed herself out of her comfort zone. So she’s doing really well with that. – Yeah, she likes these ones. – (CHUCKLES BREATHLESSLY) – Straight right! – (GRUNTS) – Good work. OK, left body, left hook! – (PANTS) – (TIMER BEEPS)

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Three! Finish ’em off! Bang! Nice. – DEENA: Initially, I say to her, you know, ‘What do you want to do?’ And she’ll tell me, and then sometimes it is a bit of a plan of how we can go about making it work. – Good work. – (GRUNTS) – Good counter. Slip! And counter! – DEENA: There is that bit of fear attached to new activities. Sometimes the logistics, the environment — is it user-friendly for somebody with a disability? Everything she asked to do we’ve found a plan, worked through the plan and made it work, and from there, she’s just gone on to the next thing and the next thing, achieving goal after goal after goal. – One, two, one, two. Left hook, right uppercut. – (CHUCKLES) – Nice. Nice. – DEENA: That’s just given her more confidence to try the next thing — this progression of, ‘I can do this; I can achieve.’ – Good work. Keep pushing, keep pushing. 15. – I enjoy how boxing makes me feel strong and powerful, and it’s fantastic for my core, which is something I need to work on. – One, and time. – (TIMER BEEPS) – (GROANS) – Good work. – I enjoy the different motions it makes me do, and when Josh calls out a number, I don’t have to think, and I just know what movement I’m required to do next.

(LAUGHS) Three! – Josh keeps it fun and always keeps me on my toes, even if I’m not feeling 100%. – Right. How I know she’s gettin’ tired — she was hitting with the wrong hand. – (ALL LAUGH) JOSH: ‘Nik, she’s always punctual, she’s always smiley,’ and she’s always willing to give 100%. She picks things up really quickly. She got the combos from day one. She got her slips and her combos and how to counter pretty much in one session. – I am now fitter and stronger than I’ve ever been. I’ve even got into biking lately. I love the freedom it gives me. I feel I can go anywhere without my chair holding me back — and it’s opened new doors for me socially too, as well as fitness-wise and competitively. There are days I bike and listen to music. I feel independent and relaxed. For me, it is a safe place I can go to get away. (UPLIFTING MUSIC) With my new confidence, I wanted to step things up even more. I’m a bit of a thrill-seeker at heart, but I didn’t know if adrenaline sports would be possible for me. Then I saw a story about Jezza Williams. – Hi. I’m Jezza. I’ve had an accident, um, in 2010, and, um, I broke my neck. (ACTION MUSIC) I had to find new ways to entertain myself, really, and keep my life as exciting and as busy as possible. I got told I do not understand the severity of my situation, and I’m like, ‘Well, you don’t really understand me.’ – NIK: Jezza is a real adrenaline junkie. – JEZZA: Adventure is the most awesomest thing that anybody can do. It’s the only time in life when you… go and do something without planning or knowing what’s gonna happen.

NIK: He started a business called Making Trax. – The whole point of Making Trax is because New Zealand is the adventure capital of the world. You know? There’s so many awesome activities. There’s rivers, there’s mountains, there’s the sky…. We have millions of tourists every year coming to New Zealand to have an amazing time. But if you were to come in a wheelchair, there’s no infrastructure, there’s no understanding, and there’s a lot of unknowns. When I say ‘accessible’, the word is inclusive. It doesn’t matter if you’re in a wheelchair. It doesn’t matter if you’re from a city in some crazy country. Doesn’t matter if you’ve never experienced the activity before. It’s not ‘accessible tourism’. Accessible tourism is passive — ramps, disabled toilets, parking spaces… I don’t care about that sort of stuff. Inclusive tourism is where anybody can rock up and do an activity. If they have the information before they arrive— It could be anything — saying, ‘This company doesn’t have a disabled bathroom; ‘use a bathroom before you arrive,’ to, ‘Let’s go wilderness rafting for seven days. ‘We will provide equipment to make it possible.’ What I do is I go into the company and I make sure, through information, adaptation and cooperation from the companies, we can provide a trip for any ability. – I messaged Jezza to ask whether someone with my type of disability could partake in these types of adventures. He said, ‘Of course!’ So then and there, I decided I was gonna do the trip of a lifetime — exploring the South Island. – (COMPUTER BLIPS, CHIMES) – Hi! – Heya! Hi, Nikayla. Hi, Deena. How’s everything rocking? We gettin’ excited? – Yeah! – Show me your excited face. – (LAUGHS) – Yeah, girl! So, uh, we’ll meet you at the airport, get you all teamed up with your lovely Trax guide, and we’ll get you all ready, and we’ll boost all the way out into the mountains. – Plenty of snow? – There is plenty of snow. I told the snow gods that Niks and Deena were arriving,… – (LAUGHS) – …so I’m sure that you’ll get a powder dump the day before you get there. – Cool! – Arranged. Well done. – That’s so cool! – (LAUGHS) – And then we’re gonna see if we can get you out the gondola and give it a go to do luging. – She’s a bit of a speed demon. – Yeah. – I can tell by the haircut. – (BOTH LAUGH) – Then, my lovelies, we’re gonna head over to the wild West Coast, where we’re going to jump out of a damn good plane. But you will be changed forever, Niks. – Yeah. – You’ll be wanting to— You’ll have that addiction buzz goin’ on, and you won’t want to stay still no more. – What… is… the… car… like? – DEENA: What’s the car like? – It’s got a hoist in the back that can get your electric chair in. – Yeah? – Plus, it’s got side seats in the passenger’s seat that comes out and lowers down, so you can get in and out of it real easy. – Cool! – But I think we’ve got pretty much everything covered. – Gonna be brilliant. – Yeah! – Epic! Epic. Epic. – So, see ya soon. – Thank you! – Pleasure! – Yeah. – CHUCKLES: See ya. – (COMPUTER BLIPS) – Time to pack, eh? What do we need? Thermals? – Yeah. – Three, cos we’re gonna need them for the snow. – I feel so confident now that my body will be able to handle this trip. – I can put more in there. – Yeah. – Those ones OK? – And I don’t know what might happen to my body in the future, so I need to do it now, while I can. – Right, we need jammies,… – (RUSTLING) – …underwear, of course… – Oh! I forgot… my… ‘brave’… undies. – Brave undies. Of course. I’ll go get them. – Thank you. – So, do you want the white? Or the pink? Or take them both? – Both. – Double-layer, d’you reckon? – Yeah. – Certainly need those for jumpin’ out of a plane. – Yeah. – Brave undies for jumpin’ out of a plane! – Yeah. – ‘I’m really excited for her, cos she is so excited. ‘She’s been building up, getting herself fit, ‘and I just think it’s gonna be a once-in-a-lifetime trip for her. ‘I just want her to just embrace it, take it by two hands ‘and just enjoy every minute.’ (EXCITING, UPLIFTING MUSIC) – I can’t believe it’s really happening. I’m arriving in Queenstown. This place is mind-blowing. – This is so spectacular. I don’t think you could get better views anywhere. – No. – Best spot, eh? – Yeah. – Come on, then. – I can’t wait to look around, and Jezza’s got us booked on the Skyline Gondola. Perfect. – Um, it just unclips. Ready to go? – Yeah. – Cool. – I feel super lucky to be here. – (DEENA CHUCKLES) – MAN: Been in a chairlift before, or…? – Have you? – No. What goes up must come down — we’re headed downhill, fast. (SPEAKS INDISTINCTLY) – Hang on. Hang on. – When I get excited or nervous, my hands and legs can start to spasm, but getting into the luge chair — so far — is actually going OK. – You watch me, man. – Deena’s driving this thing, and I just hope she doesn’t crash. She’s the true speed demon. – Trust my driving? – Yeah. Oh… – I wouldn’t trust my driving. – (BOTH LAUGH) – Yee! – (DEENA LAUGHS) – DEENA: And then the other way. Whoo-hoo! Lean, lean, lean! – This feels so cool! But I was right about Deena’s driving. No wonder she gets to my place so fast. (EXCLAIMS) – (DEENA CACKLES) – I hope she doesn’t drive this fast on the morning commute. (MUSIC CONTINUES) That was amazing! What a way to kick off this adventure. – Thank you. – (INDISTINCT CONVERSATION) – The next morning, at the hotel, we’re getting ready for the big stuff. I’m super excited. – All right, this is gonna be an exciting day, Nik. What d’you reckon? – Yeah. – Yep? What are you looking forward to the most today? – Jet…boat. – The jetboat? – Yeah. – Perfect. Ready to go? Brakes. Clip in. (GRUNTS) Make sure we don’t throw you out the chair. Good to go. – Good. – All right. OK, and we’re off. Gettin’ ready for the day. You all right, Rob? – All good. – Yeah, all good? – (ROB GRUNTS, STRAINS) – Our Making Trax guide is a great guy called Rob. He’s awesome at helping me and Deena get around. – Brakes on. – How we doin’? Ready for another day of adventure? – Yeah! – Yeah. – You sure? You could’ve stayed in bed if you wanted to. – (GRUNTS) – Nah? – No. – OK. – No. Get her out. – (CHUCKLES) – Got it? – (GRUNTS) – OK. Feet forward. Flat. One, two, three. – I wish I had one of these hoist seats back at home. – ROB: Feel good? – Yeah. – Mind your head. – DEENA: OK. First stop, the Shotover. (RUBS HANDS TOGETHER) – Yeah! (UPBEAT ROCK MUSIC) It’s a beautiful day, and we’re heading for the Shotover River. – Got the flash shoes on today again? – Yeah. – I’m gonna get some shoes one day, and they’re gonna be just like yours. – It’s freezing cold, and Rob’s got bare feet. I guess they breed ’em tough in the south. – Here we go. That’ll keep you warm, that’s for real. – (SPEAKS INDISTINCTLY) – Oh, true. True. – Yeah. – I can put your hoodie on if you’re happy, anyway. All good? – Yeah. I’ll admit — I’m a little scared. Getting into the jetboat is a bit of a challenge. I told you about my spasms, right? – Just, when, um, Nik gets excited, her legs don’t do what she wants them to do. – OK. Yup. – So I just wanna make sure she gets in there safely. – Definitely. – But with everyone helping out, I reckon we can do this. – You got those wheels? – All righty. – I’ll pull the chair out. – And then under your legs. Is that OK? – Yeah. – Cool. Righto. Good to go? We’re good to go. Going down. I’ll sit you on the side, m’dear. Good lass. – Right, we’ll come into the boat as well. (GRUNTS) – There we go. – There we go. – Hold on, hold on, cos we’re— OK? – (GROANS) – You wanna move across? – Yeah. – Good. – I’m a bit worried I’ll slide around, so I wanna sit in the middle. – Um, can you sit there, Rob? Cos it’ll stop her sliding. – (GRUNTS) – So we’ve got one to block her either side. That’d be cool. – With Rob and Deena beside me, I feel safe. – Whoo-hoo! (EXCITING ROCK MUSIC) – Here goes nothing. – Here we go! – This is so cool! We’re going so fast. It’s like being in a race car. – Whoo-hoo! – What a huge rush. – Putting my mask on. Whoo-hoo-hoo! (CACKLES) Now we’re getting close to the next one. – We’re getting a private ride and special tricks. I feel like a VIP. – There goes my hairdo. Oh my God, that was amazing. I think it’s one of the best things I’ve ever done in my life. Next, I’m headed into the mountains. Check out all this snow. – Morning. – How are you? – How are you feeling this morning, Nik? – Good. – Good. – I’ve always wanted to ski, but I never thought I’d be able to do it. – One, two, three. Yep. Let’s go. – Nice. – Whoops. – Thanks for helping, Nik. – Hold on. I’ll just bend your knees up, and then you can push. Hold on. OK, go now. This all right? You are? Are you right in? – Yeah. Yes. – OK. Nik, do you mind if I just go behind your back… – Yeah. – …and just check your jacket? – Right now, I’m being strapped into a sit ski. Because I don’t have a lot of upper-body strength, this one is a bi-ski, with two skis on the bottom. Someone is gonna help me control it. Yeah. – Yes? – Yeah. – Is that good? – Nice and tight? – Yeah. – Perfect. I’m gonna wrap you up. – Yeah. – Yeah. – Good. – Good? – Yeah. – How’s that? – Perfect. – Good. – Is that too tight anywhere, Nik? – No. – No. – No. – No? OK, that’s cool. Perfect. – Awesome. Hey, um, Nik, we can try some outriggers, right? – Good. – We put them on your hands,… – Yeah? – …and then you can help me with the skiing, right,… – Yeah. – …by putting the extended arms on the snow. OK? – Good. – Do you just wanna give that a go? – Yeah. – It’s gonna be probably a bit more tiring,… – Yeah. – …and we’re gonna go on… – Hopefully I’ll be able to use my hands to help guide the speed and motion. I’m just not sure they’re gonna behave today, especially in these gloves. – If you pop your hand… through here… All right. Can you just straighten your wrist? Oh, perfect. That’s it. And then your thumb is in here. Just grab this one. Nicely. – The biggest thing is those hands can be a little bit unruly and not do what she needs them to do — so, they clench a lot, and when they clench, they don’t wanna let go. – If you just straighten your wrist nicely for me. – (GRUNTS) – DEENA: Her right hand’s really quite grippy, and when she’s excited, nervous, cold, it’s worse. That really plays up, and it’s been playing up today quite badly, so… But she’s managed to get it in there, so hopefully it’ll be all good and she can hold on and ski. – OK, I’m just gonna squeeze in behind, if you don’t mind. – Yay! Perfect. – Beautiful. – Can you imagine that, Nik? – (LAUGHS) – That would be crazy. – Now I’m all strapped in, we’re ready to hit the slopes. – You tell me when you’re ready. – Yeah, I’ll just get this one right. – OK, I think we’ve got it. – Yeah? – Yep. – I’ll just go behind you. (GRUNTS) Sorry. And we’re gonna face downhill. Wow! Good work! – Nice! – On the left this time. – Left, left, left! Beautiful, Nik! Whoops! Here we go. (UPLIFTING MUSIC) – This is exhilarating. The wind and snow in my face is so cold, but it’s making me feel so alive too. – Wow. Now skiing is the best thing I’ve ever done in my life. I’m gonna call Jezza and ask him to plan another trip based totally around skiing. I could do this for days and days. This trip has been incredible. I’ve done so many cool things and seen so many beautiful sights. I really feel like I’m living my best life. A few years ago, I wouldn’t have dreamed that this was even possible. There’s just one thing left to do, and if I’m honest,… – Perfect. – …I’m terrified. – We gonna spin the legs around? – Yep. – I literally feel sick in my stomach even thinking about jumping. – Wait. (CHUCKLES) Just relax. – (ENGINES ROAR) – The problem is I’ve told so many people I’m gonna do this that now I have to go through with it. I’m staring death in the face. I know I can do this. I won’t let fear hold me back. I’m pretty sure I don’t have a choice now, anyway. YOLO! (EXHILARATING MUSIC) You know what? It actually feels calm, even though I’m falling. it’s just so incredible looking over this beautiful landscape. But I’m super relieved the parachute is up now. It feels good not plummeting to my death anymore. I feel safe — sort of. – Yeah! – Whoo-hoo! – I can’t believe I’m doing this. It’s a magical experience. But that doesn’t mean I’ll do it again. Ever. Sorry, Jezza. I am so proud of myself. I have just conquered one of my biggest fears. I feel like I’ve come so far. Tonight, I’m gonna call my family and close friends to share the amazing experience I just had. – # Dun-da-da-dah! – (LAUGHS) – There you go. Brave undies. – Hang on, hang on — we gotta make sure we can read it. Whoo! – Anyone can achieve what I have achieved. Believe in yourself, stop being afraid and just do it. (UPLIFTING MUSIC CONTINUES) Captions by Able Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2020 (MUSIC CONTINUES)

  Inside Outside: Josh Davies

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