1 UPBEAT MUSIC Captions by Pippa Jefferies. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2015 READS: 'Real isn't how you were made,' said the Skin Horse. 'It's a thing that happens to you when a child loves you for a long, long time, 'not just to play with them, but really loves you, that you become real.' A real. 'I've looked after Marita and Johnny since 1974, so that's 41 years I've been a full-time carer.' ...and lovely... What are these things here called? Whiskers. Whiskers. 'They are forever young in many ways, 'They're` They're loving, kind and` and they have a childlike attitude towards things 'and they're happy and they enjoy life and being round Dad.' Yeah. Eh, John. Mm-hm. I'm 80 next year, and now I've got to go in for this aorta-artery repair. And as an old man, uh, things could wrong. READS: 'Once you are real, you can't become unreal again. It'll last for always. 'The rabbit sighed. He thought it would be a long time before his magic called Real happened to him.' Yeah. You know your dad, Johnny. He'll be all right. He come home afterwards. John, he be right. Yeah. He loves you. BIRDS CHIRP I get up about 5.30 and come down and have the best cup of tea of the day and just waiting for Marita and Johnny to emerge. DOOR OPENS Good morning, Daddy. Morning, darling. How are you? I had a big sleep. You had a big sleep last night? Yeah. Are you tired, were you? Aw. You're lovely, aren't you? Yeah. I love you so much. 'Marita's loving and warm and kind and gentle.' Dad, I want breakfast. Do you need breakfast? What would you like for breakfast, love? Toast. You like toast? Yeah. What would you like on it? 'Marita's 49 in February.' Peanut butter. Peanut butter. She was born with microcephaly, a severe condition, uh, caused by a small head development which reduced her brain size and her brain development. Yeah, the market yesterday. < Nice wholemeal bread. Just want her to be as contented as she is now forever, and I hope that when I die that she'll get, you know, care and she'll be secure and` and that she won't be taken advantage of. I do fear for... Because she's such a loving person, she could easily be taken advantage of. Morning, Johnny. What do you want for breakfast this morning? Toast. Toast? Toast. It's Friday today, isn't it? Mm. You go to the day service today, don't you? Mm-hm. 'Johnny is 46, and he was born with the same condition.' Eh, not too tired this morning? No. Your eyes are nice and blue, aren't they? Mm. Love you, Johnny. You're lovely, aren't you? You've got a lovely smile this morning. Mm-hm. I always like it when you've got a smile on your face. Your big blue eyes. Johnny's been a handful. He's schizophrenic, he's got type II diabetes, he's insulin-dependent, he's got a thyroid problem, but other than that, he's all right. Three. You count, Johnny. Four, five, six. That's it. You don't mind taking pills, do you, and you're very good with your injection. It must be horrible getting it all the time, but you're very brave, aren't you? Here you go. (SPEAKS INDISTINCTLY)... get milk. We always get the green one cos it's what? Trim milk. > Good girl. Trim milk, that's right. He understands much more than he can verbally express himself. You know, if tell him things, he understands OK. Sometimes he'll say, 'I can't understand. I can't do it,' you know, but I say, 'Rubbish,' you know. 'He needs to have the shower set for him. He needs to` help with putting his clothes on.' Oh, you're very good, Johnny. Shower. When he's psychiatrically distressed, his toileting goes to pot, and that will often end up halfway down the passageway. Sometimes Johnny wets the bed, and we have to change the sheets. And we'll change them from black to nice pretty ones. He'll like that. The cares that Johnny needs is that of probably a 3- or 4-year-old, and he loves his bed and he loves cuddly toys on his bed and he likes me to tuck him in at night, which might seem strange for a 48-year-old man, but what he loves and makes him happy is important. Open the door now, showing all the rooms. I like this one. This is my... This is my favourite doll. Yeah. Wedding dress. Precious. Long, the lace. Andrew. Couple of times, yeah. Really really hot. Now. One, two. Two. Is that enough? 'I just want to be a good father. Well, you know, I just get back to the, you know` 'the` my basic philosophy of just taking in each day as it comes and just, you know, 'just to get Marita and Johnny's breakfast and then to get their lunch 'and then to get them dressed and then to get them to the day service 'and then to come home and then to do the things around the house 'and prepare a meal at night, get them to sleep.' Going now. GENTLE GUITAR MUSIC You just break it up into a sequence of events. If you look at the whole lot together, it seems impossible. But if you just take one task as it comes, it's not so big. BIRDS CHIRP I was a Kiwi joker ` an ex-seaman, a railwayman, a steel worker. And when Marita was born, I went up there and I was chased away. They said, 'We don't want a man here.' NZ was a very male-dominated society. I went to the pub and celebrated in the traditional Kiwi way, and my father went looking for me and said, 'You... You better get up to the Mater Hospital. There's something wrong with that kid of yours.' The experts said she was microcephalic. I mean, that could have been something from outer space. I had no idea about what a microcephalic was, and it means 'small brain'. We` We went to a geneticist, and they'd said that the chances of having another microcephalic were almost nil. And, uh, Johnny came along, the same hospital, the same nurses, the same specialist, another microcephalic. You` You've both gotta carry a recessive gene to have a child like this. It was just bad luck that we met each other carrying that recessive gene but not knowing we carried it. Mary could not accept them, and during that last few months Johnny was at home, she obviously couldn't cope, and, you know, she eventually got very bad schizophrenia. She'd come home from group therapy and they must have told her that the best thing for her was to leave, and so she got out of bed and gave me a kiss on the cheek and said, 'I'm going.' And I thought she was going to the dairy, but she went. Marita was crying for Mum, and there was` she was 3�. I made a friend of Johnny Walker. I needed it. And I was drinking, and I used to get morbid and sad. Marita was in a home; Johnny was in a home. I was gonna go back to sea and jump ship in South America. I was... I couldn't see any hope. And I picked Marita up from this IHC home, and she come running out, 'Oh, Daddy! My daddy, my daddy!' That was it. GENTLE MUSIC And I made a goal then to give up the drink. There's an inescapable bond that you have with your children that` that I always felt for Marita and Johnny. Yeah, it's like an umbilical cord, isn't it? You know, you're linked as one. In 1974, Norman Kirk's government brought in the domestic purposes benefit, and it gave single parents the chance to keep their children. And I read about it in the newspaper, and I thought, 'Gee, I'll apply.' I was the first male in NZ to apply for it. Marita was then in, uh, Mangere Hospital, and Johnny was fostered. I brought Marita home first and, uh` and got used to her. And then I had Johnny home and got used to him. In Mangere Hospital, they said, 'Oh, Marita's friendly with this little Maori chap. Would you mind taking him? I said, 'Well, that's a bit of a big ask, and I've got two already.' Tony lived with us for eight years, and then he` he ended up in Kaurilands. GENTLE MUSIC Having Johnny and Marita has taught me one thing, and that is love. Love can beat everything. GENTLE MUSIC (SPEAKS INDISTINCTLY) In four days, I'm having some major surgery in the AAA repair ` the aorta, artery, aneurysm. It's obviously dangerous. They tell you that you could die. Like many parents of the disabled, that's my greatest fear. Marita loses the house; she loses her room; she loses her cat; she loses me; she loses everything that her life revolves around. And Johnny ` when I go, nobody will be able to sense what Johnny's needs are like I can. I mean, it's taken me a lifetime to learn. I want Johnny to be safe. That's the biggest worry because, you know, the aggression and` and people not understanding him. You feel worried, Johnny? W... Gonna worry about your dad, Johnny? Mm-hm. He will come home, Johnny. He'll come home. Don't worry, Johnny. Your dad can... He... He come home afterwards and look after you. Your dad be all right, Johnny. Mm-hm. You can hug your father, John. GENTLE GUITAR MUSIC MUSIC CONTINUES Here you go. BOTH: Thank you. Here you are, Johnny. Say, 'Thank you very much.' Thank you. Thank you. Enjoy. BOTH: Thank you. Well, I'm a retired drunkard, so I don't go to bars very often, but I believe that Johnny and Marita should be able to enjoy them the same as anybody else, and Johnny obviously... That's his second glass. He'd have 10 if we'd let him, which I wouldn't mind, but it won't do much for the sugar level, will it? And you really enjoy going into a bar, don't you, and having a wine? Yeah, having a wine. And meeting people? And, yeah, meeting people. Go for a nice meal sometimes. Yeah, sometimes. You like to get dressed up, don't you, and put lipstick on? Yeah, yeah, dressed up. Yes, we do just things that, you know, everybody else would do and assimilate as closely as possible to the rest of the community. And by doing that, the` the community hopefully will treat them just as they would anybody else. It's an extremely important part of the upbringing of people with disabilities, and it makes them believe that they're the same as everybody else, the same aspirations and the same hopes and same dreams. What's your dreams, Marita? What would you like to do best of all? My dream goal ` wedding dress. All friends in a party. There you are. Out you go. Thank you very much. < Thank you. Thank you. Bye. GENTLE GUITAR MUSIC OK, Marita, can you give us a hand with the mussels, please, sweetie? OK, I'm coming now. (COUGHS) Excuse me. See the mussels we're doing here? Mussels. If you can get a` Would you like to get an onion out of the cupboard? What's the other thing that goes with it? Garlic. Which garlic? Can you find it? Garlic too, Dad? Yeah, bring it over, love. > And where's that bok choy that I bought today? Yeah. Pak choi? It's in the fridge. Oh, Marita's in charge. (LAUGHS) I'm in charge. I'm in charge. How you going there, sweetie-pie? Getting there. Getting there? Yep. Dad? Cooking some... Yes? Um... Dad, I'm... I'm just gonna brown too. Tomorrow. Yeah, hang on, love. What? Tomorrow. Tomorrow? Yeah. What is tomorrow, Dad? Your eyes are going. He gets a thing called tardive dyskinesia, and it's the result of he gets this injection for his schizophrenia and it affects the muscles in the backs of his eyes, and his eyes get tense and sometimes they'll lift up, and all you can see is the white of his eyes. TV: ...the theme tune to the... For Johnny, the advent of schizophrenia was the most difficult. I jokingly call it the visitation of the black dog. He comes out with a... His lip drops slightly and there's a sort of a stillness in his eyes, and he has this glare, and I know that I've gotta be very careful with him. There's always that chance of lashing out, and I try to pre-empt it all the time by sensing his behaviour. And if he does get angry, I've got to physically get him in a corner so that he can't get out, but then that's always dangerous to me, because one time in the bank he bit my ear and bit my nose, and there was blood pouring out of me. There's always the risk to my being, but I'd rather that risk than hit somebody else and` and end up with a prosecution against him. Puppy! And it's very hard to control yourself sometimes. It takes a lot of willpower to stop you reacting. So you've got to be very sensitive. Don't raise the pitchy voice too much. Just try and direct him to speak... that way or take a deep breath or` or distract his thinking. Anyway, Johnny, what's all this for? We're gonna check it. So it should be between four and eight. Will be about` What that mean` blood means, Dad? Five,... What's it say? ...four, three, two, one. Push it in and hold it for six seconds. I've got my throat, Dad. One, two, three,... I've got... ...four,... BOTH: ...five, six. Forks and knives. Forks. There you are. Thanks, Daddy. You want chilli, John? No, I don't. GENTLE GUITAR MUSIC INSECTS CHIRP PEOPLE CHATTER, LAUGH Not long to go now. GENTLE MUSIC CONTINUES There you are. Good morning. Good morning. How you going? ALL SPEAK AT ONCE You want to buy that if you want anything? Hold on, Johnny. What about this? GENTLE MUSIC Two... and a dollar. (LAUGHS) Keeps things simple. Yeah. See you, Johnny. Take your time, Johnny, and we'll go and see Ivy and Pete, OK? Just` Just don't barge through here. Just wait for people to walk, OK? That's good. There you are, Marita. You and see Ivy. PEOPLE CHATTER Oh, good morning, Ivy. Good morning. And good morning, Pete. How are you? I'm fine. Good morning. Good start today. Flowers. I'll put in water, please, Ivy. I'm gonna get home straight away. I'll put in the vase. Good. And fresh in again too. And you like the smell of the freesias? Yeah, the freesias. It's my favourite flowers. Wait, John. Wait. Traffic everywhere. Yeah. You all right? Yep. 'Seems to be an inability to` to really support parents at home. 'We see nobody, you know, and there's nobody ever comes here and says, 'you know, "Could we...? What could we do to make life better?"' Hiya. How you going? Hi. How you going? The temperature drops 5 degrees when you come from that side. That side to this side, eh? I think I've been fortunate that I, whenever I've had to confront a situation, I've` I've used common sense and` and I knew that Marita and Johnny would need more love and more protection and` and more expressions of my love than at` than a normal person would have. For Johnny, the ideal place really would be Spectrum Care in` in Hamilton, where he normally goes for respite. But for six weeks, that's $12,000, so I can't afford it. There'll be enough money in the account to pay for six weeks at IDEA Services, which is $7200. PEOPLE CHATTER GENTLE MUSIC CONTINUES Just wait there, Johnny. MUSIC CONTINUES Well, we'll put this somewhere in the garden. We're gonna plant them in the corner here. In the corner. What's that? Right next to the zucchinis. And you know tomorrow morning you're gonna go and stay at Richmond St for a couple of days? Oh, a couple of days. You looking forward to it? Yeah. Oh, a couple of days. So you know why Dad's going into hospital, don't you? Yeah. And get all better? Yeah, to get better. And you know when I come out of hospital, Marita, what are you gonna do? You're gonna help me, aren't you? Yeah, help you. And you're gonna do the dishes. Dishes. Help me with eating. Eating. And we're gonna get the bus down to Thames to get our stuff. Thames. Get our stuff. Are you looking forward to the helping me at home? Yep. GENTLE GUITAR MUSIC OK. Push! ALL GRUNT See, I'm strong at pushing. I'm 79 in a couple of months' time, and you've gotta be having a few aches and pains when you're an old fella. ALL PANT I'm buggered. GENTLE GUITAR MUSIC There was something on the radio about old people's home, and Marita and Johnny said to me, 'Oh, Daddy, you can't go in an old people's home, because you're not old.' They think I'm young` I'm gonna be the ever... (LAUGHS) ever-young person. I wish it would happen, but it ain't. They never see me as old. And I must admit, I don't get too much chance at being old. (LAUGHS) Now, this rope goes in the boat, doesn't it? Yeah, in the boat. And` And then this holds on to the net. Yeah, the net. And then the other bit of rope goes on the other end of the net, and you hold it. Yes. And use two hands, John. I know sometimes I feel just knackered, you know, and Johnny demands, demands, demands, and that's very difficult sometimes when you just` just want five minutes of your time. You just have to give yourself. There's just no option. Nothing today. Nothing there. All the fish have gone somewhere, Johnny. Yes, Dad. Yeah, where have the fish gone to, John? Over there. Under the water. Yeah. Yeah. If I never come out of hospital from this operation, I've got two trustees, Laila, that's coming down tomorrow, and a nephew. And I've just said in my will that they would sell, you know` sell everything and put all the money in the public trust for Marita and Johnny, cos you couldn't trust, you know, anybody else. And they would try and find the best place that's available for Marita and Johnny at the time. Give us your plate, love. Mm. Mm. We visited a fella today that` You saw a guy in a dress? I don't think Barry would wanna see it. ALL LAUGH They're an amazing family, and Cliff is an absolutely loyal and` and very good friend. When Cliff asked me to be a trustee in the event of his demise, I didn't give it a second thought. What do you think about this operation business? It comes out, eh, Dad? Yeah? What's gonna come out of Dad? > He can afterwards. Yeah, he'll come out the hospital. > Yeah. Yeah. > And I've really worried at times about Cliff's own, sort of, mental health and his happiness, especially at the times when John's been really unwell. I mean, at times I've said to Cliff, 'It's OK for your sake and for Marita's sake 'you` you want Johnny to be cared for in another way.' He's been absolutely clear that the best place for Johnny is with him. I dread the thought of when I die not for the sake of dying but, you know, she would miss me something dreadful. Yeah. I mean, I think you just have to know that you've given them incredible skills to cope with the changing world too. < Yeah. I mean, you've done` changed so many things over the years in their... You know, they've travelled, they've kind of been exposed to other people, and there's always the Auckland whanau. Yeah, I'm sure you'd make a wonderful trustee for the kids and` and, uh, look after them well and make sure that they have a decent and a stimulating life. Yeah. And a safe life. See you, matey. Goodbye. Bye. Good luck on Sunday or Monday. Take care driving home. Yeah. Yeah. See you later. Mm. Bye, darl. Good to see you. See ya. See ya. Bye. Thanks for coming. GENTLE MUSIC Disneyland. Aw. There's you and Goofy and... Goofy! See? Oh yeah. Goofy. (LAUGHS) Disneyland. Disneyland. That's a monkey on your shoulder. That's in Gibraltar. Look. Look. Who's that there? Where? Eh? Four of there, wasn't there? Yeah. Mm-hm. Tony, you, Johnny, and Marita and Dad. And Tony went, and now there's three of us, isn't there? Yeah. Mm-hm. And we're still happy? Mm-hm. Still love each other? Mm-hm. Yeah? You still like being at home with Daddy? Mm-hm. I still love you. Mm-hm. Eh? I couldn't live without you, could I? Mm-hm. Eh? GENTLE GUITAR MUSIC WAVES LAP FAMILY CHATTERS MUSIC CONTINUES I woke up this morning, and I did feel a little bit apprehensive. I thought this is the last full day that` of me with Johnny and Marita. But Marita and Johnny are going to the IHC. It's a good service, and they know the people, and their friends are there. Luckily, we've got a couple of men there, and there's able to, you know, control Johnny. GENTLE GUITAR MUSIC MUSIC CONTINUES Marita particularly is` is anxious. She` She'll worry about me, I know. I just hope that everything goes all right with Johnny and the medication's done. GENTLE MUSIC CONTINUES And are you gonna miss me, Johnny? Yeah. Eh? I love you so much. Yeah. I hate going away and leaving you. (MUMBLES) Mm? You mean so much to me. Dad will be right. Yeah. Eh? I'll come back. Dad come back. And picking us up. Bye, Dad. Eh? And you're gonna come home and help me, aren't you? Eh? Oh, I'll miss you so much, darling. (CRIES) Oh. (CONTINUES CRYING) Do you wanna go inside, eh? Marita, don't worry. (CRIES) I've done it before, coming to hospital and come back. GENTLE GUITAR MUSIC ENGINE STARTS HORN TOOTS MUSIC CONTINUES Come inside. Come on. Oh. (CRIES) Come on. GENTLE GUITAR MUSIC What do you want for lunch, Dad? Sandwiches with cheese. Yeah. Cheese? BOTH SPEAK INDISTINCTLY GENTLE MUSIC CONTINUES Yeah. 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 UPLIFTING MUSIC Captions were made possible with funding from NZ On Air. Copyright Able 2015