1 UPLIFTING MUSIC Captions by Pippa Jefferies. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2015 Hello. My name's Bea. Welcome to my world. This is my family. This is Mum, Arlo, Dad. This is a picture that my sister Maddy drew, but she's away at camp at the moment. It's called The Underwater Melon Man. This is my room. This is one of my toys, called Lightning. I like to read lots of books, but Coraline is my best, because she is very strong and brave. UPBEAT GUITAR MUSIC In the last four years, I feel better now. I can be free to be me, and I can be myself. I can be Bea. MUSIC CONTINUES BIRDS CHIRP I'm going to show you my most interesting thing. I have a thing called arthrogryposis, and it means that my feet and ankles were twisted. This is what I call the inside house, and this is Mum's plants, which I think are real. And I have arthrogryposis in my hands too, but I get around with my hands really good as well. Arthrogryposis is a condition that affects the joints, and it starts to make its presence known in utero. Bea has amazingly gotten away with only having her hands and feet affected. Uusally, it's a whole combination of body parts ` feet, hands, elbows, shoulders, hips, knees, sometimes curvature of the spine. So, limited movement in arms, possibly internally rotated shoulders. Bea's the only one I've come across that's only feet and hands. And here is the, um... the Tarzan... swing. Before my opeartion, I looked like I had... absolutely no stabled in my feet or any balance, so... it would take a long time to do it` whatever I had to, like, run or c... (COUGHS) or canter or gallop, or whatever I had to do, I couldn't do. When I look back on footage of Bea walking around and playing outside, I` I remember that feeling that I had of... It was such a horrible feeling watching her move, thinking about painful and how wrong it looked and must feel for her body. POIGNANT MUSIC When I was 4, I couldn't walk that well as well as other people could, and my feet were like, other people used to say, jellybeans. They thought that we could get new... legs and new feet. It's morning, baby. No... Her feet aren't functional. They cause her pain. They don't look very comfortable at all to walk on, and, um, they're damaging the rest of her body. My monkey's hiding somewhere. That... Because she's got no bend in her foot to get herself forward, she twists her hips, so she sort of sashays on tip-toes. And just recently she's started to get pain in her hip. See, they're sitting up. So you can... get some medicine. If she's on her feet a lot during the day, then at night it'll sort of come back with a vengeance, and she'll be really sore and won't, like` have broken sleep. Yeah, lots of Deep Heat. GENTLE MUSIC When she was 7 days old, an orthopaedic surgeon put her into full-leg casts. When she was 4 months old, she had a tendon-release surgery, and then immediately after that she went into DB boots. It was really painful. I would have to push her feet down to a right angle, and so there was lots of screaming. When she was about 2, she had a huge surgery, which was a total foot reconstruction on both sides. They took the cast off, and she couldn't even place her foot in my hand, it was so sensitive. And five minutes later after that appointment, we were sent over to Orthotics to force her feet back in those boots. And so we would put them on at 9 o'clock at night, she would scream in pain until about 5 o'clock in the morning, and then we'd take them off, and then she'd sleep for four hours, and then she'd have a four-hour sleep in the afternoon. And then at 9 o'clock we'd put them on again, and there'd be screaming. So when she finally was able to put weight on them and they were flat, it was for three weeks that she was able to wear shoes, and after that they started to go back again. You can just move these. I can't fix his leg, cos he's a girl. After four years of struggling with surgeries and her pain and also coming to realise that she'll also probably end up having a badly damaged hip, having curvature of the spine, being in a wheelchair, being really inactive and being an angry person who's always in pain, just thought that surely amputation would be a better option. I get them on like this. I really like them, because they look cool by my skirt. GENTLE MUSIC Let's play hide-and-seek. Come on, then. MUSIC CONTINUES It's a big decision to make, but it's a big decision to decide to have a child. We have to make a decision, and this is the decision that we're deciding to make. You'd be inhuman to feel like it was easy and to not have doubts. MUSIC CONTINUES CHILDREN CHATTER, BELL RINGS By doing the amputation, uh, hopefully it's like a one-off thing and she gets the prosthetics, and then she has a really great childhood. She's gonna be more able-bodied, I think, with prosthetics than without. GENTLE MUSIC MUSIC CONTINUES BIRDS CHIRP We'll get you a regular hot chocolate, Bea? Yes, with marshmallows. GENTLE MUSIC MUSIC CONTINUES CHILDREN SHOUT IN DISTANCE GENTLE MUSIC Have a good day at school. Yeah. Bye. See ya. Love you. Love you. Bye, Dad. See ya. Well, socially I think that Bea sometimes struggles, because all through kindy and all through that time of her life, she was always in pain. So to play freely... It's distracting ` pain. CHILDREN CHATTER At school I feel confident and not confident at the same time, like I'm in between. CHILDREN CHATTER Well, in school, there's this friend called Kimberley, and she makes me so happy. Good morning, Bea. Good morning. Having a lovely day? Yes. Kimberley is my best friend that I can remember. Also is Michaela and Jasmine. Eff-un-stress-ly? (GIGGLES) Par-tic-pit-tate. Par-cip-pit-tate. Kimberley and Bea met when Kimberley came into Bea's class and her desk was put facing Bea's. And Bea said that they looked at each other, and Bea saw Kimberley's hearing aids and Kimberley looked at Bea's feet, and then Kimberley said, 'We're made for each other.' Make sure I don't see them. Uh, love... Kimberley's very protective of Bea, and sometimes she comes out with really wonderful things like, um, 'You can` You can play with me, but you just be yourself. You do want you want to do.' Things like that. GIRLS CHATTER Let's go! CHILDREN LAUGH On the playground, when I play with my friends, I feel like a team, like in the group. I feel like I can do anything with them. Her strength is nothing I've ever seen before in an adult or a child. CHILDREN CHATTER She bikes to school. She was determined to bike to school when she was 6. And she was sweating and her face was really really serious, and she was riding this little bike with training wheels, and it was, uh, chunky concrete, and, um, I was saying to her, 'Are you all right?' And she was just saying, 'I'm great.' And she biked the whole way to school, and she would've been so been so sore and awkward and` but she refused to stop. The thing I like about Napier and Hawke's Bay is that` because it has heaps of shops that you can go shopping in. (LAUGHS) That's my favourite part. Inflatable World is my favourite place. Oh, I've been there. Yeah. It's very fun. But I hate it when I have to race against my friends to climb up. Yeah. I always lose, and I'm always the last one. Same. Having no feet feels like... like I have no... things to stable me, like stable me up or... because I always wobble a little bit when I'm standing still. And so I can't actually... be stabled and... Makes you feel sad, doesn't it? Mm. Yeah. But it also feels exciting, cos I run` I run quite fast. Yeah, you do. My flavour's boysenberry. What's yours? My flavour is mint chocolate chip, and it's a double scoop, and cookies-and-cream. (LAUGHS) Yum. It tastes delicious. Is it? So, what are you gonna be when you grow up? I'm going to be a hairdresser. I think I'm just gonna be, hmm, a fashion designer ` like, probably design clothes and sell them. Ah. We can work together. Yeah, work together. And... I could do the hair; you could do the fashion. Yeah. Passion for fashion. (LAUGHS) When I was 4, my mum told me a story to help me understand what was going to happen to my legs. GENTLE MUSIC Are you going to be the girl in the story? Yeah. OK. Well, once upon a time there was big giant man, and he made everything. He made all of the cars and all of the plants and all of the pets and all of the people. One day he was in the middle of making a little girl... ...called Bea. ...called Bea, and he heard a really loud banging noise outside. He quickly went, 'Oh!' and then rushed outside. Then the little girl thought she might like to get up and have a look at what happened outside too. When she got up and tried to walk, she discovered that he hadn't finished her off properly and she couldn't really walk properly. And then one day her mum and dad said to her, 'Guess what. 'The doctor said that he can take off your feet and give you new ones ` build you new ones.' New ones. They went to the hospital,... Huh. ...and the little girl had some medicine and then she went... (SNORES) and fell asleep. When she woke up, she looked under the blankets and there were no feet at the end of her legs. Yep. Do you know what she thought then? What? She felt a little bit worried. Yeah. And then she remembered what that meant, OK? I'm getting new feet. That means` That meant that she was getting new feet. THEME FROM 'SWAN LAKE' PLAYS I don't think that there's any question anyone could answer or anything anyone could say that would make me feel 100% fine about it. But I don't think it` I think there would be something unusual about you if you could feel 100% fine about someone cutting off your child's feet. So for some people, um, amputating her feet may seem like an incredibly dramatic way of coping with the situation when the alternative they may not see it as being so bad. Hello, Grandpa. I'll leave you in two minutes when you go hunting... for leopards. Yep. Goodbye. POIGNANT MUSIC (GROWLS) WHISPERS: Bea. WHISPERS: They're all sleeping. (GROWLS) POIGNANT MUSIC I don't want to. You don't want to? Can I take that on that? No, because we're going upstairs. You can press the buttons. We're going upstairs. Good girl. # Twinkle, twinkle, little star. # How I wonder what you are. # These are my bumps. They're beautiful, aren't they? > And I got these, and I got no feet. Amazingly, the difference in her, not just physically but psychologically, from the minute they were gone has been incredible. Two days after she had come out from under general after getting her feet amputated, I lifted the covers up and there were no feet there and there was blood on the plaster cast, and I felt a bit shaky about it, you know? I mean, her feet were a huge part of my life. I used to fall asleep holding them. You know, every night I'd be on my knees holding her feet. I'd... They were` They represented her to me. They were` And they were gone. I'm gonna` I'm gonna get ballerina feet. She lifted the blankets up and she looked at me, and I was so nervous and really aware of how I was going to respond to her and where that would lead in her mind. And she looked at me, and she said, 'Oh, Mum, I've got no feet!' It was like Christmas. Really really soon you're gonna be able to run around and dance like that with Marley, eh? Yeah. Wave. Big wave. Yeah. And press the G for 'ground'. (LAUGHS) GENTLE PIANO MUSIC Gosh, we're so excited. (LAUGHS) MUSIC CONTINUES Here we go. Straps on. Ooh, straps on. I'm going to get my new feet! Yeah! (GRUNTS) It was really really moving the first time I saw Bea walk on legs, because I` I hadn't imagined seeing her with feet. It was really strange and really amazing. And I think that for her it's amazing as well. (LAUGHS) Yeah, last time. It's good. (SPEAKS INDISTINCTLY) It's not going to hurt? No, it's not going to hurt. What about down here? I can feel that. Can you feel anything up here? But there I can feel it. So from there up? So, the first thing we put on is a sock. Always goes on first. OK. > And then a liner. This is a liner cos it's soft and spongy. You feel that. You wanna put that into there? That's good. Ooh. > See if that'll slide all the way in. That's the girl. Look at you. Look at you! Try and take a few steps. (GRUNTS) You're supposed to walk, not jump. Have a walk, Bea. I like jumping. Yeah? (LAUGHS) Do a bit of walking for me. You're` You're not... You're little, and I'm big. You're tall. I'm going to walk the whole way there. Are you? You're gonna walk all the way over there? OK. Walk over. OK, let's go. Let's do it. POIGNANT MUSIC I'm not puffed out or nothing. Yeah. Give us a real happy one. I'm just going to go round the other end there. Try and tuck your bottom in, Bea, so you're standing up tall. Poke it out this way. Yeah, like that. POIGNANT MUSIC I can't believe how tall she is. Mm. > Way more overwhelming than I thought it would be. Way more, because she's never ever walked like that. Yeah. That's better than... Yeah. Yeah, she's never had feet that are that shape. Ta-da! I think that she really enjoys pushing herself. So having prosthetics, she could push herself in different ways. Is it hurting, Bea? No. She would practice walking uphill and using just the tippy-toes of the feet and trusting that even though they weren't her feet, they were still gonna carry her, so she could` she could do more. GENTLE MUSIC ALARM BEEPS OK, see ya. Bye. The horseriding for Bea's been huge, and it's not just the riding of the horse, but it's being able to have a relationship with animals in general. Welcome back. Welcome back. How was your holidays? Good. Ready to ride? Yes. Yes. All right, shall we get your legs off and your boots on? Yes. Also, Dionne, the riding instructor, has become a really special person to Bea. The relationship that they have and the sort of, um, evident ` constantly evident ` belief that Dionne has in Bea's ability. Um, you've cantered on three horses now, eh? Yeah. Yep. Jonty, Georgie,... ...and... Fred. Yeah. At Riding for the Disabled, we have a huge range of people that come to us for a huge range of issues. Bea's realised that this is something that she can do the same as anybody else. It doesn't depend on having feet. She doesn't need them. She's not at any disadvantage. Bea's relationship with the horses is really good. She's very compassionate, and she thinks a lot about what her horses are enjoying. Start up here and work back. Fred hasn't had any work today. You're his first rider, so do you think he's looking forward to it? BOTH: Yes. Do you want to ride today? Are you ready? Ready? Oops. Yep, so you'll have to go through this gap. Come on. Get him into a bit of a nicer walk than that, Bea. When I'm riding the horse, I feel nervous and free and happy. Give him a bump with your legs. Riding a horse is hard for me because my legs aren't stable enough to balance on the horse. Ready to have another go? Yes. OK. (CLICKS TONGUE) When I kick, I want the horse to realise that I want to walk. And whenever I kick,... it canters. (CLICKS TONGUE) A while ago she was riding in a saddle, but she found it really difficult cos it didn't work with the stirrups and riding with her prosthetic legs didn't really work for her either, because she couldn't feel what she was doing with them. Use your legs to keep him going. So bareback pad is a better option for her. It's good for developing their seat and their core strength and their balance, which Bea will definitely need. Give your legs a wee break while he's not going. Take a` Take advantage of the break. So walk to, Bea, and think about what you're gonna do on this next lap. All right. So start trotting when you're ready, OK? (PLAYS JAUNTY TUNE) # In the wonderful desert of melon... # Fane has been my friend for two years, and he's made me a painting of a bird in a jug, and now he's made me a song. # An amazing young lady called Bea. # was an 8-year-old twin amputee. # She said, 'I don't need feet to make me complete. # 'I can still # 'kick your ass # 'with my knee.' Here we go. When I was dancing with Fane and sing` and singing the song with him, I felt free and I feel like I can do anything and ready to dance. OK, now try putting the ball down and spinning as fast as you can. # Kicking that ass, kicking that ass, kicking that ass. Without the ball. Just you spinning on your feet. Yeah. # Kicking that ass, kicking that ass, kicking that ass. # (PLAYS END FLOURISH) A personal thing that I want to do is dance. And I really feel like I can do it. Nothing's gonna stop me. There are two things that Bea does where I get to see her free of any worry. One of them is when she's in the pool swimming, and the other one is when we have music playing and we're dancing together in the lounge. But she also has that desire to perform. Hi. Hi, Bea. How are you? Good. My name's Leah. Nice to meet you. This is Corinne, studio director. And Madison, senior dancer and Corinne's daughter. Hi, Bea. Good to meet you. I'm gonna get you to turn to face the bar. We're gonna start with a little bit of bar work using this one. I want you to come a little bit closer so that your arms are just coming out from your waist, and we're gonna stand up nice and tall. Then we're gonna take our right foot and take it forward. Good. And then bring it back. I really want to see how far she'll go and what she can do with this dancing, because she's got the determination physically and she can really focus on pushing herself. So, all we're going to do is you're going to bring your right leg up, and when that leg lowers down, the stomach's gotta squeeze nice and tight to hold you, all right? So think of pulling your belly button down to the floor. So keep those... Yep. Squash my hand. That's it. Right leg ` bend it straight away. Bend. One, two. Squeeze my hand. Three, four. Good girl. Down. Five, six, seven, eight. Left. Good girl. Over. Excellent. Hands back in. It's been a really good experience having Bea into the studio today, looking at what she's capable of. She's a very confident young lady, and we would love to help her grow in` in her dance and, um, in her enjoyment of movement. We're gonna start on our right. We're gonna do two steps together out to the side. So we're gonna go right, together. That's it. Just finding that centre. Good. Take your time. Right again. Right, together. Swing and a clap. And swing and clap. Left. Out. One and together. One day I would like to be doing tap dancing. And clap. And I could be in a concert, and everybody would look at me. Left. Out and together. And out and... Dancing ` it feels like I'm just free and I can do anything with anyone. ELECTRONIC MUSIC I wish Kimberley could see me right now. MUSIC CONTINUES I have no doubt in me whatsoever that Bea will grow up to be a really confident, strong, powerful woman... (LAUGHS) and do whatever the` whatever she wants. (LAUGHS) ELECTRONIC MUSIC CONTINUES You know what I really want to do now? What? I wanna hug you. Me too. BOTH LAUGH Let's just... And getting... (LAUGHS) Where are we gonna get our ice cream? Just there. Yay! Yay! We were just talking about it. Ice cream! Ice cream! Ice cream! This year's ninth annual Attitude Awards will be held on December 3rd. Join us at the Viaduct Events Centre in Auckland to celebrate the achievements of NZers with disabilities. Tickets are on sale now. For more information, go to attitudelive.com Captions were made possible with funding from NZ On Air. Copyright Able 2015