Captions by Glenna Casalme. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2014 FLOWING GUITAR MUSIC Th` The thing that I struggle with the most is the fact that I'm a human being and I'm no different to everybody else, but people want to put me in a classification of being different. I was born in NZ. I was born on this world, but people wanna treat me as some sort of alien from another planet. I think, to me, that's the hardest thing to deal with. It's... I don't feel any different; I` I find it difficult to do some things, but the reality is I'm a human being. I mean, if you cut me, I'd bleed. And it's no different to anybody else. The other day I was walking along. Someone stopped and said, 'Oh, you're thalidomide.' I said, 'Yeah.' And we talked, and she says, 'Oh, you're quite normal, aren't you?' I know what she meant by it, and she didn't mean anything horrible. She was a nice lady. But I'm not different. I'm not different to anyone else. I've had to deal with it all my life. I just hope that our legacy is that younger people don't have to suffer the same way we have. ALARM CLOCK BEEPS BED CREAKS RHYTHMICALLY AIR HISSES AIR HISSES (PANTS) Barry De Geest was born with no arms and short legs ` the result of the drug thalidomide. Hailed as a wonder drug in the late 1950s to treat pregnant women for morning sickness, the side effects were devastating. Before it was banned, an estimated 10,000 babies worldwide were born with missing limbs and other severe deformities. You could look at thalidomide in two ways. People are saying it is devastating and a disaster. But in my case, it's made me who I am, and I'm proud of who I am, and I'm` I'm happy to be who I am. I mean, obviously, I don't want to make light of it and say that if I could not be thalidomide, I wouldn't be. But I don't think it's been the big disaster for me that it has been for a lot of people. (GUFFAWS) LAUGHS: You said to keep down. (LAUGHS HEARTILY) (LAUGHS) On to high ground. On to high ground. (LAUGHS) One, two, three. (GRUNTS) One, two, three. (GRUNTS) Thank you. (LAUGHS) (LAUGHS) BOTH CONVERSE INDISTINCTLY ...so you've done well. ...so you've done well. (GROANS) What do you think? What do you think? (GUFFAWS) One of the hard parts of living is that I need to have people in my life now; I used to be completely independent. Oh yeah. I have a carer come in every morning and help me get up and shower and shave and` and get me ready to` to go out to work. And I pay someone to come in and do the cleaning. TOOTHBRUSH WHIRRS When I was in my 30s and 40s, I could, uh, dress, toilet, do everything by myself. I mean, I was completely independent. But now I can't do any of that. (CHUCKLES) Most people will tell you that when I meet them, I put them at ease. So it's me that actually has to deal with my disability to put them at ease. And the reason I do that is because I want to be able to live and` and function in society. So it's` it's a lot easier for me to put people at ease than for them to try and put me at ease. GENTLE MUSIC Barry was born in Oamaru in 1961. His mother, Anne, suffered from severe morning sickness during her pregnancy. Her doctor gave her a free sample of a new drug ` thalidomide. She only ever took two pills. Before Barry was born, his mum, his builder dad and his 2-year-old sister were a typical NZ family. They've tar-sealed the driveway. There's no footpath there any more. It's quite good. It looks nice. It looks nice. Cos Dad put the ramps on because he thought I'd never walk. But that one was so steep, I used to fall over all the time. See the little kitchen? That was all done for me. See the little kitchen? That was all done for me. Why, you spoilt brat. I was. I was. (LAUGHS) When Barry was born, there was silence. And then all of a sudden, they seemed to be rushing round, and... and... they put... covered Barry altogether, and then they whisked him away,... which was very wrong. Doctors told her Barry wouldn't live. She wasn't allowed to see him for three days. And when he survived the week, his mother was told to go home and forget about her son. Barry remained at the hospital. His mum visited him every day for nine months, until one day she just picked him up and took him home. From then on, his mum did her best to bring him up like any other kid. POIGNANT MUSIC I reckon the old wheelchairs were easier. (LAUGHS) (LAUGHS) Less technology. He still has close friends from his school days. Just accepted Barry, and he was always treated normal by everybody. Every time somebody says, 'Oh, I can't do that,' 'Well, Why can't you do it? Let's` Let's have a crack.' And, um, yeah, so we never saw him as being different, and any differences there were, we'd just work our way through them. People got used to seeing Barry around. The` The good thing for me was being disabled but not being sheltered away. Having friends like Lindsay and other able-bodied guys and` and for them to just think of me as Barry... And that was a really, really, really critical part of my life ` was just to be seen as Barry ` not Barry disabled. Unusual for the time, Barry went to the local school. I often think about how my life would've been if Mum hadn't kept me. It would've been completely different. I wouldn't have had the opportunities that I have, or the attitude. I look at my attitude towards life, and it's very much the same as everyone else's. I haven't had that institutional behaviour that you get when you live in an institution. Yeah, we had a good life, and I knew he had to go away for himself, you know, to get on in the world, but, oh, I missed him. I really needed to get away, because I found it really difficult. My father and I would clash all the time, and I didn't really get on. And so for me, it was a really important thing to` to find my own way life. Barry eventually ended up in Auckland. He's lived in his own home in Pakuranga for the last 10 years bringing up his son, Joe. Being your father's been the best thing in the world. Make sure you eat before you leave. Make sure you eat before you leave. Yeah. Thank you, Grandpa. That's all right. Hey, hey! Enough of that. 'I don't think I would've been the same if I hadn't had Joe for the last 10 years.' We've, sort of, both grown up together, really. For me, my dad's just always been my rock, you know. He's always been there for me, and I` I couldn't be luckier if I tried. And I know exactly what I will be like when I'm a father, because I've been given the best role model I ever could ask for. So, I'm going to put my foot on the brake, and then I'm gonna use the arm to put it in auto reverse. I wanted to drive when I was 15, and a lot of people said, 'No, you'll never get your licence.' My father sat me down and said, 'Look, Barry, you're gonna have to face facts 'that you'll probably never be able to drive.' I was determined I was going to do it. Then I was, uh, 21 by the time I got the car. Being able to drive was independence. Being able to get around and go be totally mobile was really important to me. I got my licence in November, and by the time Christmas holidays come, I had travelled from Oamaru to Auckland and back. The pain's quite intense now when I drive any distance, so I don't drive any distance any more. GENTLE MUSIC Morning, Janice. 13 years ago, Barry set up the Renaissance Group with fellow disability consultant Carmel Henry. Morning, everybody. ALL: (POSHLY) Morning, Barry. > ALL: (POSHLY) Morning, Barry. > (GUFFAWS) ALL: (POSHLY) Morning, Barry. > (GUFFAWS) ALL LAUGH > So, what have you got for me today? So, what have you got for me today? Oh, I just need... a cheque signed ` petty cash. petty cash. Can you hold it up, please? Today he's the CEO of what is now the country's largest provider of supported-living services. That much?! That much?! Mm. For a long time, I've wanted to set up my own business, and I've worked over the last 30 years managing other people's, uh, organisations. Like, I` I managed the Wellington Disability Resource Centre and then Crippled Children Society in Palmerston North. And I gained the skills ` management skills ` that I needed. Barry's now responsible for employing up to 90 staff. Morning. Good morning, Smeena. How are you this morning? Good morning, Smeena. How are you this morning? All right. You ready for our meeting? I bet you are. You're always on the go. You ready for our meeting? I bet you are. You're always on the go. I'm all ready. 'So we set up Renaissance. It was nothing. We had absolutely nothing. 'And from there, we've built up this business now that we're very very proud of. 'At the time, there was no such thing as supported living. 'Quite a major mind shift for people to move from, um, the organisations providing for disabled people 'to disabled people doing it for themselves. 'So we've helped in excess of a thousand to 2000 people to become independent. 'I can't tell you how good it is to be in a position where you're helping other disabled people, 'and I get paid for it. I just wanna see other people get something out of life, like I have.' BIRDS CHIRP Thank you. That's sweet, mate. No worries. No worries. Yeah, that's cool. It's my birthday, and I'm gonna be special. To turn 50 is quite a` an achievement, really for so` you know, considering I wasn't supposed to live at all. # Happy birthday to you. # Happy birthday to you. (LAUGHS HEARTILY) # Happy birthday to you. # Happy birthday, dear Barry. # Happy birthday to you. # Hip, hip... Hip, hip... ...hooray! Hip, hip... ...hooray! Good on ya, kids. Well done. > He's 50 now, and here we are, so... we might behave like we did in the olden days again, eh? (CHUCKLES) I'm just amazed. I did quite often think, 'Now, I wonder what he could do.' And my mother was dying of cancer at the same time he was born, and she said to me, 'Don't worry about that boy.' She said, 'He's gonna be all right.' (LAUGHS) UPBEAT MUSIC Look, it's my 50th birthday. This is a celebration of you lot. All of you people have made a difference in my life, brought me to the point that I am now. > And that` that means a lot to me, and it's really great to have you all here. > ALL APPLAUD When he turned 50, Barry started thinking about his long-term independence. I'm gonna make a motorhome. So here it is ` a nice white bus. A modest payout from the drug company that distributed thalidomide has enabled Barry to fulfil a long-held dream. Right. Here we are, Robert, inside the bus. What have we got here, bro? What have we got here, bro? This is the bed area in this area here. And where the tools are, this is gonna be my standing room. So I can stand here and get into bed. Yeah, that's the, uh, changing room. And these aren't to hang myself; they're so the lights and everything come to here, don't they? Exactly. Exactly. I like it. What I want is to be independent again where I can travel. And it's all set up so I could just pull over on the side of the road and stay the night. So it could be at a friend's place. And a lot of friends don't have accessible housing. I might be able to get in it, but then the wheelchair won't get in, and` and I've got to try and walk around, and it's hard for me to do. So having the accessible bus means that I know wherever I go, I'm confident that I've got accommodation. LAID-BACK MUSIC So the thalidomide settlement that we got gave me the opportunity to be able to buy the bus. But it's not a cheap project to do, so I used up quite a substantial amount of it to buy the bus and also get it, um, modified. I` I actually see myself eventually living in the bus. My bus. WATER GUSHES PACHELBEL'S 'CANON IN D' Not cold. Not cold. Why not? Not cold. Why not? Not cold. For a long time, I've been very independent. I could shower myself, toilet myself. And over the last 10 years, that's slowly dwindled away. So now I actually need help. And that's been a really hard thing for me to come to terms with. It's not easy to be in a house and have people come in, even if they're the nicest people. (SINGS IN SPANISH) (LAUGHS) I used to be able to hold a dressing stick in my mouth and pull my trousers up and do all that sort of thing by myself. Now I can't. You sort of feel like a wreck, really ` a train wreck. Like, I would say my body's acting like I'm in my 70s. Yeah, I still lift up my arm even if I don't have one. Yeah, I still lift up my arm even if I don't have one. WOMAN: Yes. That's it. When I turned 40, I went through a midlife crisis, like most men, and I went and got an eagle. So then I started to think about other tattoos I could get. And being disabled, you're often misunderstood. So I started looking at animals that were misunderstood ` you know, people saw them as being, um,... you know, attack animals that people were scared of ` just like disabled people, really. So then I went and got a mako shark. And then I quite like black panthers, so I went and got... See, most people get a full sleeve, and it takes them years to get. But I got a full sleeve in one go. And I'm quite proud of my body. It's such a little` It's such a... I mean, it's taken a lot of years to abuse the body the way it is today. Life is a real struggle for anybody. No one has it easy in life. And the hard times have been not having any money, being out of work, uh, having people look at you and` and treat you like you're something from another planet. Good boy. Good boy. Come here. Good boy. This milk today? This milk today? Yeah. I'll have Weet-Bix. This milk today? Yeah. I'll have Weet-Bix. Weet-Bix? OK. What else do you want on it? What else do you want on it? Banana. What else do you want on it? Banana. OK. Cool. Here you go, Barry. Here you go, Barry. Thank you, sir. Here you go, Barry. Thank you, sir. No problems. 'CANON IN D' CONTINUES What is actual independence? What does independence actually mean? And it doesn't mean doing it all for yourself. What it means is` is living your daily life. So if that means getting somebody in to do the cooking, and that means you could go out and enjoy life, then that's what it should be. For most of his life, Barry's done everything himself. His shoulder and mouth are his substitute hands, and they're starting to wear out. Now I can't hold things as well as I used to, cos my shoulders got really stiff and` and harder to use, and my teeth are` just about had it. So carrying stuff around. It's` It's one of the sad parts of growing old, I'm afraid. And it's got a lot harder. 'CANON IN D' CONTINUES (SIGHS) There are dark times. I do get in a dark place, and sometimes it's hard to get out of that dark place. There's been a number of times when I felt like I didn't wanna be here. When I was a kid, I remember standing on the edge of our swimming pool at home, and it was empty, and thinking that if I dived in now, it would be all over. It was about the energy levels it takes to live. At about four or five years ago, I started to get back in that head space again, and I'm` I was tired ` absolutely exhausted with trying to cope with life and trying to cope with` with everyday events and` and just getting up in the morning, just getting up out of bed, you know, and going to bed, having to put the breathing machine on, take it off and do all the things that` that I had to do every day to live life. And so I thought, 'Well, I've done it. I've done everything that I set out to do. 'I can drive; I've lived my life; I own my own home. What's left to do? 'What do I really need to be here for?' Because I just felt like maybe this was time for me to depart, you know, and have a rest, because I thought I'd earnt a rest. But my problem is that I always wanna know what's happening tomorrow. 'What's gonna happen tomorrow? If I go now, what am I gonna miss out on?' Mmm. Love you. Love you. Love you too. Mmm. Mmm. You're a stirrer. (LAUGHS) Mmm. You're a stirrer. (LAUGHS) Yeah. Barry met Bronwyn 12 months ago. Hello! Hello! Hello! > How are you today? How are you today? Good afternoon. Welcome. > What a lovely shop you have here, with lovely ice cream. What a lovely shop you have here, with lovely ice cream. Oh, thank you very much. Thank you. LIVELY MUSIC Yum. But she wasn't an easy catch. I definitely did not wanna go out at all, did I? No. She` She played real hard to get. I just didn't want another relationship. I was happy being on my own. Taken me a long time to be happy on my own, and, uh, yeah. And I was the same, but she` she` I couldn't get her out of my mind. So eventually, I talked her into it, and a year later, we're... I couldn't be happier. I've never been so happy in all my life. When we're together, we're, kind of, always laughing. We're always doing things. Yeah, Barry's just a lot of fun to be around, and, yeah, it's just awesome. Well, do not put it all dripping on me. I'd made the conscious decision that I was gonna live the rest of my life on my own, because it had become too difficult to try and share my life with anybody, and I just shut off that part of my life where I actually thought that I'd find somebody that I could live with. I've had quite a few relationships in my life. Cos people have got together with me and said, 'Oh, your disability doesn't matter.' But when you actually get down to it, it does. (GIGGLES) (GIGGLES) Oh no. You've put ice cream on my face. 'They think they can cope with it, but once they get into it, it just becomes, uh, hard for them, 'and they don't quite cope with it any more. 'But the thing about Bronwyn is she doesn't treat me as a burden.' Like, you know, there's certain things that she says she wishes I could do, like put my arms around her. And she knows it's not gonna happen, but she also knows that it's important to talk about it and not to feel bad by bringing it up. So we have a really honest and open relationship. It is really tricky when people are watching us, especially when we're having a difference of opinion. 'Well, you've gotta give, you know, Barry his way.' 'Oh, she's being so mean.' Um, but we both can hold our own. We've` I think being secure in our own selves has made, um, a big difference. You know, like, it has been really good, and you're, kind of, like, waiting for when the honeymoon's gonna wear off. Um, but after a year, it still hasn't worn off. So, yeah. So, yeah. I feel the same way as I did the first time I met her. And that's never happened to me. I usually get bored and want to move on, but I don't feel that way at all. Yeah, as hard as` I mean, it is a lot harder being disabled. It's so hard to get into a relationship. And I know` Growing up, I always thought that I'd never find someone. And you get a lot of, uh, situations where women want to save you. And it's not because they're bad ` cos they're lovely people ` but it's not true love, you know. And it's really hard to find true love, I think, for anybody. But... being disabled, it's even harder. Yeah. I didn't wanna end up being, like, Barry's caregiver/slave. See you. See you. Bye. I've got my own life. You know, like, I'm busy at uni, and I think that gives me something for me. And Barry supports that and encourages it. If I start, kind of, going, 'Oh, poor me,' then it falls apart very quickly. LIGHT GUITAR MUSIC Barry has a new business venture, Unarmed Innovations, manufacturing and selling custom-made wheelchairs, with the help of Bronwyn. This is our` our riser chair. The reason for having the riser chair is that, um, wherever I go, with not having any arms, I can't reach anything. Then I could reach top shelves in the supermarkets, or I can use my feet on benches. CHAIR WHIRRS CHAIR WHIRRS Oh, you're the same size as me. CHAIR WHIRRS Oh, you're the same size as me. BOTH LAUGH Stirrer. Stirrer. Can you engage me, please? Hey, I like this. Hey, I like this. Oh, do you? It's funny how you're taller than me. I know. It's wonderful. That looks really good. That looks really good. Cool. And just put the chair` Oh, you've got it bang on. And just put it right up high. You need a hand? You need a hand? (SNORTS) You need a help? You need a help? (CHUCKLES) The one that's on the market now only takes 70kg. You've just gotta hold it on for a few minutes. You've just gotta hold it on for a few minutes. Oh yeah? Oh wow. Oh wow. So, your leg, like` Obviously, the foot plate` I don't need a foot plate. I don't need a foot plate. No, true, but... This keeps everyone... This keeps everyone... If you look over here in the photos, there's me and my house. And I have a standard house; I don't have a modified house. And I have a standard house; I don't have a modified house. Oh yeah. OK. Cool. So it fits in normal doorways and, you know, down my house. So it fits in normal doorways and, you know, down my house. Cool. Do you like going out to the beach and things like that? You don't go out and about. Oh. The bus is finally finished and fitted out to Barry's design. Come on, Billy. Oh, no, he can go in his seat, can't he? The bus is completely, uh, self-sufficient. So it has its own power,... I'll turn around. ...water supply, um, toilet, shower, everything. And then here,... we have the shower and toilet. Yeah, so it's all very self-sufficient for us to go away in. But with his loss of mobility, Barry can no longer drive the bus. His dreams of freedom were in danger of disappearing. Fortunately, Bronwyn is more than happy to take the wheel. ALARM BEEPS ALARM BEEPS I've got my trusty driver. She's good, eh? She's the perfect woman. Bye, y'all! FUNKY MUSIC We're on the road again! (CHUCKLES) We've been from, um, Kaitaia right down to Tauranga, um, through to Taupo, down to Palmerston North. So we've been all around the` the, uh, sort of, top middle of the North Island. It's been great. We've stayed in all sorts of places. FUNKY MUSIC CONTINUES METAL CREAKS TYRES SQUEAK (LAUGHS) (LAUGHS) I take the dog for a walk, because otherwise, I'll be telling her what to do and how to do it, and she'd say yes to it. She doesn't need me to do that. Um, but Bronwyn used to camp when she was a kid, so she's very good at setting the bus up. So we have a ball. It's such a beautiful night. It's such a beautiful night. OK, this should be on. I will go and check it... I will go and check it... (GUFFAWS) I will go and check it... (GUFFAWS) ...before it's midnight this time. One time we plugged in, and we` the power wasn't working, and we didn't know until it was, uh, dark. But between us, we work it all out, and we talk about what we're gonna do. A-And relationship's really based on communication. It's` It's really important for us that we have really good, open communication. Cos I can't do a lot, to be honest, but, um, just actually doing it together is really important. Sun's nice out here. DING! Are you gonna still want pear crumble for tea tonight? Are you gonna still want pear crumble for tea tonight? Of course. I believe we're very good for each other. I've never felt so confident with a relationship. I just feel happy and contented, and I feel like we can take on the world. Bronwyn makes it easy. She pushes me along ` literally pushes me along. And getting in and out of bed's a struggle, but she gives me a hand, and she'll push and shove. It's a lot of fun. We can be away by ourselves with no one interrupting, and we can go where we want. And I just love it, and I love being with Bronwyn. Isn't this the life? 'Life's a battle, but it's a battle worth fighting.' GENTLE MUSIC Captions by Glenna Casalme. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2015