The Man With No Arms & Other Stories

The Man With No Arms & Other Stories

The Man With No Arms & Other Stories

Dinard Press

The Man With No Arms & Other Stories

Glenn Busch Photographs by

Hanne Johnsen

Speak that I might see thee Ben Jonson

Ultimately, I suppose, we are all disabled in some shape or form.

If I ask myself, did my disability shape my life, I have to say yes, it probably did. Not because I have a problem with it, but because other people do. It’s very much that visual thing; they see the disability before they see me.

Marilyn Stratford

Dedication

This is a book about people who live daily with an exact knowledge of what the word, disability, actually means. The telling of their experience, the facts and dreams and feelings they have consented to explore for the benefit of others, comes at a price. It is not easy to speak of one’s own life in an intimate way. That those involved chose to do so is an act of courage, born of a desire to share such awareness and information as may be found in their stories.

It is a generous gift.

With admiration, this book is dedicated to the people who appear in it: Steve, Sally, Greg, Alex, Anastasia, Carole, Maurice, Marilyn, Peter, Leigh, Pip, Ben and Karen.

First published in 2007 by: Dinard Press 7 Park Terrace Lyttelton, New Zealand

In association with CCS, Canterbury West Coast With support from The Lion Foundation

A Place In Time documentary project, School of Fine Arts, University of Canterbury

Dinard Press © 2007 Text copyright © Glenn Busch 2007 Photographs copyright © Hanne Johnsen 2007 ISBN 978-0-473-11817-4 A catalogue record for this book is available from the National Library of New Zealand This book is copyright. Except for the purpose of fair review, no part may be stored or transmitted in any form or by any means, electronic or mechanical, including recording or storage in any information retrieval system, without permission in writing from the publishers. No reproduction may be made, whether by photocopying or by any other means, unless a licence has been obtained from the publisher or its agent.

Design: Aaron Beehre Typeface: Caslon Printing: Wyatt & Wilson Print, Christchurch, New Zealand

Contents

Steve Roome 13 Greg and Sally Thomas 45 Anastasia Del’Monte 89 Carole and Maurice Williams 121 Marilyn Stratford 143 Peter Bradley 167 Leigh Montford 191 Pip O’Connell 213 Karen Calder 243

The Man With No Arms & Other Stories

Steve Roome

It does get tiresome. That’s the truth of it; I’d be flat out bullshitting you if I said different. There are a lot of times when I’d like to be absolutely incognito, same as everybody else. Occasions like when I’m with my partner say. Maybe we’ve gone to a restaurant for dinner and it would be nice if people were looking at us because we’re a great couple. Feeling happy for us, two people out having a great time together, which we are. But no, that’s not the reason. The reason they are looking our way, is that I am eating with my feet.

Leaving primary school was like leaving home. Everyone knew me there, they were used to me, nothing had to be explained. I was just Steve Roome, cheeky kid. Nothing to it. Going to high school, that was when it changed. It was like the big wide world and it straightened me out pretty quick. I tell you, it was like being sent off to boot camp. Most schools have their bullies; always one or two that can’t help but say something smart – can’t help but have a go – so yeah, there were always going to be fights. I guess that’s where I got to prove myself. I reckon I gave as good as I got and to be honest it was often my own mouth that got me into trouble – I was pretty out there. I suppose one way or another school was always going to be a lesson.

I finished school at 16. No school certificate, no qualifications, no nothing. You wouldn’t exactly say I was prepared for the working environment. I didn’t have anything much at all in the way of skills.

I guess at that point, the sort of person I was mentally – if I’d had arms – I’d have maybe been a labourer, or a panel beater or perhaps

16 The Man With No Arms & Other Stories

just holding up a shovel on the side of the road. Having no arms, I was sent off to the Rehabilitation League instead.

The League was a place with a whole lot of different rooms.

A mailing room where they did things like paper inserts, an electronic room, a sewing room, there was a woodwork room, yeah, they basically did their best to find you a skill in one of these rooms. For me they ended up making a wee jig on which I made parts for beehives. I must have made thousands of those things. I used this air compression gun, chusk, chusk, chusk; it was all good till I shot myself in the toe.

My most important toe. The staple went right on in and disappeared.

Well, Jeez, I knew that was going to hurt. It made me realise too how careful I had to be with my feet. If I damaged them badly, hell, that could be my chance at a livelihood gone right there. Next they put me into art classes which I sort of enjoyed but pretty quickly realised I was never going to make a living out of it. Finally they shipped me into the clerical room and that wasn’t too bad. Eventually I got up to about 22 words a minute with the typing – not too bad for the old toes. I did a bit of phone work there as well and all that started to give me some hope – you know, like maybe an office job – I started to think I might have a chance at something but in the end it came to nothing.

There was always one thing I had a bit of problem with at the League – I’m not really sure how to say it – it was like some of the people I worked with there were a little slower in their capacity than others. And what happened was they used to bring these business people around, they’d come walking past the windows looking in at us and that was bloody horrible. You felt like you were in a damn zoo.

17 Steve Roome

It really did feel like that and I found I was… well, you could see the looks on their faces. I was always on at them, “For Christ’s sake stop it.

Don’t bring them here. I don’t want to be looked at like that.” So yeah, there was a bit of a locking of horns towards the end of that year and I finally ended up spitting the dummy. “Nah, see yous later.” And that was it, unemployed. I stayed that way too, from the age of 16 through to about 20.

That was quite hard, not just for me but for the family as well.

I mean mum and dad always backed me in everything I did but things weren’t going as they should. The natural progression is you leave school, you get a job, you meet a partner, you settle down, you get married, you buy a house. Well, I wasn’t doing the normal thing.

I hadn’t got a job, I hadn’t got a girlfriend and I was turning to alcohol quite a bit – actually more than a bit, quite a lot. That brought on other things, fights and all that shit, yeah. Looking back I’m not sure how it happened really but I know I started getting quite resentful.

To the people I knew I was still as nice as pie, but to people I didn’t know I could be an out and out arsehole. A lot of what I would let slide before – people looking and staring and so on – stopped sliding.

I stopped letting them slide, and it was like, “What are you looking at, eh?” If I was in a café or a restaurant say I would get up and go and sit at their table, just sit there and stare at them. You’d see them go red and then there’d be some feeble muttering, “It’s only natural to have a look.” Yeah, well, it didn’t feel too natural to me. I got very – you could say aggressive – until I was around about 18 or 19. I guess I’d had enough and didn’t want to put up with it anymore. I had what you

18 The Man With No Arms & Other Stories

might call a pretty big chip on my shoulder by then. I partied hard, drank quite a bit, scared the family more than a few times. No other way of saying it really, I was a pretty angry young man.

Saying I had a chip on my shoulder is a bit vague I suppose. It can mean a lot of different things can’t it. I think for me it felt like I wasn’t being given the same chance other people seem to have. I had my family that loved me and that meant a lot but outside the family it was different. Most of us get put into some box or other but the sort of box I was being put into – the type of label they were putting on me – meant I was being marginalised. And when that happens you’re devalued, and then you’re isolated. In order to get the Invalid’s Benefit I had to have the label – invalid. It’s like they changed my name from Steve to Invalid and that’s the sort of thing that can take you down, right down. Even physically. I was so damn unhappy, and then on top of it all I broke out in these carbuncles, horrible bloody lumps of pus and stuff on my neck.

Nobody wants to be living in a society where you’re not wanted.

No one does. So like everybody else I looked for a place to be and eventually I found a slot I could fit into. I found a place where it didn’t matter what shape, size or whatever you were. I got accepted and those boys looked after me well, they really did.

Some people might have said I was mixing with the wrong crowd but I wouldn’t change anything. I am what I am today through that experience. Sure they were into bikes and they had a house with a bar and what have you out the back, hell they were hard cases but I’ll tell you what, with them I felt part of this world. And I’ll tell you

19 Steve Roome

something else, if I’d fallen down – say I was walking through town and fell over in the street – it’d be the guy in the suit that would step over me, walk on past. It’s these jokers would be the first to stop and pick me up. Brush me down.

I still see those boys, every now and again. Perhaps we might be at Spencer Park, me and the kids, having a picnic or whatever and it’s like “Hey, wow, you guys!” I’ll go over and straight away it’s “Hey Steve, you’re doing it, good on you man.” And they’ve got their own kids there and it’s like really good to see them.

I dunno, maybe back then they got a kick out of this fella with no arms that played pool, and tried to give as good as he got. It was a time that suited my temperament I suppose. An environment where… well, it was probably full of angry men with certain frustrations. Whatever, I definitely learnt a lot during that time. I learnt a lot about respect.

I learnt that it didn’t matter if you have an impairment or not, life can be nasty to anybody. I learnt that it’s important to stand on your own two feet in life and being around those guys I think gave me that.

Yeah, it did give me that.

Got me some respect too. Not blowing my own trumpet or anything but you know, here’s a fella with no arms and he’s not backing down.

Hell I lost just about every brawl I was ever involved in but I don’t…

I never back down. I never got involved in other peoples’ fights but if it was aimed at me I stood up for myself. There were times when I was like a bloody Jack-in-the-box, just kept getting back up again. I remember one guy who’d knocked me down three or four times and finally he says, “Jesus, what do I have to do.” I said,

20 The Man With No Arms & Other Stories

“Whatever it is, don’t do it anymore.” He just laughed and that was it.

These days I like to have my arguments with a 50 metre head start.

Like I say though, even in those days I wasn’t out looking for trouble.

I wasn’t being used in anyway by these guys. Never got involved in anything criminal, I wasn’t getting any money or whatever from them.

I was there because of the acceptance and I just sort of created my own wee niche. Oh, and the motor bikes. I loved the bikes. All those guys were very mechanical. In the garage every weekend pulling motors in and out. All that sort of thing. I couldn’t do anything physical, but being there, being around all that, I loved it. I wouldn’t change anything about being with those guys.

Here’s a thing but, while I was happy with the people I knew – my friends and so on – they were all working, they had girlfriends,

21 Steve Roome

and it wasn’t like that for me. I lived in the flats with everybody else but I was the one on the benefit. I was the one without a girlfriend.

I was the one that wasn’t contributing. I was happy on the outside but to be honest I wasn’t so happy on the inside. With that came the black jerseys, the black jeans, the short hair and the alcohol.

The alcohol was something I could hide behind, to the point where if I was going out on the weekend it was nice to get a few beers in my belly before I went. I wasn’t an alcoholic but I did drink a lot for quite a number of years. I certainly saw the insides of quite a few pubs but part of that was having somewhere to go. Get down the pub, couple of pints, game of pool and that would fill in a couple of hours, a part of your day, because your friends are working see, up at the crack of dawn and away. You’d get up and keep yourself busy till about midday, washing, tidying up and all the rest. Doing the dishes.

But then come lunchtime you’d be sitting there by yourself chainsmoking cigarettes. Well, bugger this; I’ll go down the pub for a few.

It was a social thing, have a game of pool, or maybe go on to the club for a few more. It made me happy… most of the time it made me happy. Perhaps I didn’t notice the stares so much either. And even if I did a few more drinks and I’d be feeling, so what.

To be straight up and honest with you, I didn’t think I’d see my 21st birthday. Couldn’t see past it at all eh. It was like, if you make that man you’ll be doing real well. Eyes closed or open I couldn’t actually see a future. Couldn’t see a girlfriend. Couldn’t see a family.

I was living week to week, from pay to beneficiary pay. I’d get enough to get my rent out of the way, my food, I’d have my tobacco for

22 The Man With No Arms & Other Stories

the week and I guess the rest went on alcohol. All very boring and pretty bloody negative really, hence the fair size chip on my shoulder.

That and a few beers could make me a bit lippy and one night during a reasonable sized brawl I got lippy with the wrong person. Maybe we just have to go down these roads sometimes but Jesus he laid me out like you wouldn’t believe. Little unfortunate that. When the drama died down a bit Steve was on the floor good and proper.

Maybe that was society sorting me out, maybe looking back he did me a favour, because he sure as hell knocked the chip off my shoulder that night. Unfortunately, he knocked five of my front teeth out at the same bloody time. That was a real bugger, that was, the year of the dentist. I use my teeth a lot you see, holding things, carrying things and so that woke me up that did. I doubt if he ever thought of it again, but yeah, I put it down as one of the big turning points of my life.

“You love cars son, I understand that, but you ain’t gonna be no mechanic.” My dad always used to say that to me. He knew I was never going to be able to work in that way and he was right. Some time after I left the Rehabilitation League they more or less closed down. Or at least they had a name change and with it a whole change of attitude which was to get people out into society – at last. They had a lovely lady named Shirley Hart and I was one of her first work placements.

Shirley had read all through my notes and realised that I did pretty well with the typing and voice and she approached several businesses around Christchurch. Eventually she ended up ringing Telecom directory

23 Steve Roome

and Lynn Hobson there – one of the few people back then that could think outside the square – saw that, okay, I might be a little slower than other operators, yet just as good, polite, everything else and she took me on. Voluntary work. I worked that way for three months and my whole feeling in that time, my whole mental attitude, everything, was just so much brighter. It gave me some direction see. Hell I was 20 something years of age and only just starting to get into the work thing, but it was great. I mean I was getting up early – all those years of doing nothing I had some bad habits – and getting up was damn hard. My time management was shocking. Alarm, what’s an alarm?

But with the work, all the other stuff started to fall into place. It was just great. The partying stopped, the drinking stopped, I actually began to make progress and see for myself that things could be different.

I guess I started to think outside the square myself.

Lynn could only have a certain amount of permanent staff and temporary staff. I got lucky when one of the ladies decided to have a child. When she left, one of the temps slipped into her permanent position and I went from voluntary into the temporary position.

So that was great. I had a temporary job. Filled out the contract every month and it was mine. And being no longer voluntary it meant I got money. Money!

How great did that feel. Well, I’ll tell you how it felt, I worked for 40 days in a row. To me the money was incredible. I worked day shift, night shift, any shift I could get. Weekends, any time they’d give me.

Then I went out and bought myself a wardrobe, you know, clothes.

And not just any old shitty jeans, I got Levis. I could also start thinking

24 The Man With No Arms & Other Stories

about getting a car and a flat of my own. I was able to buy aftershaves, the good stuff, everything. I was even able to save money. And in all honesty my confidence built like you would not believe. I could look at the person on my right or the person on my left and know that I was doing the same job as well as anyone. But do you know the best thing, I didn’t have to poach for welfare jeans. I didn’t have to poach for welfare shoes. I didn’t… I wasn’t restricted. Oh yeah, that was freedom.

As much as the social welfare people are there to help, and they do, you also feel very much at their mercy. And I guess for the first time in my adult life I felt in control. Total control. If I wanted to buy a pair of jeans I could. I didn’t have to go to them and ask.

I didn’t have to fill out papers and justify it all, I could just go and

25 Steve Roome

buy them. It also opened up other doors as in I was able to go to nice restaurants, which I’d never really been exposed to before. Prior to that a bar meal would have been a big deal to me. I was able to take my friends out and shout them drinks or a meal, whereas before I’d always had limited money. I could pay for so much and then that would be it, my money would run out. Now, it was great to be going out, I could shout them if I wanted to. It was like… even par.

After that I didn’t feel like a charity.

For the first time I felt like I wasn’t just taking, I was contributing.

I was giving back what I’d taken – being a tax payer – and that was great. Yeah, I know it sounds silly but paying taxes for the first couple of years was great. After that I probably moaned about it like everyone else, but no, it felt nice to be contributing. It felt great that, hey, I’m working and my money is going to roading, to schooling and to people who are more in need than me. It made me feel like I was up there with everybody else, rather than being someone who’s marginalised or devalued as a person. Over that period of time I felt like I was climbing the social ladder. Before I was down there, but now I was up on an even keel. I was on a par. It actually built to the point where I was starting to look at ladies in a different way. Rather than always just being friends, I was putting myself out there to wanting a girlfriend.

I worked for Telecom for about eight and a half years. First voluntary.

Then as a temp. Then full time. Not only was it good for my self-esteem I also knocked off the booze. Well, first of all having a full time job fills in your day and then at the end of the day – never having worked like that before – I was knackered. Absolutely physically exhausted.

26 The Man With No Arms & Other Stories

And lastly, there was no way I could turn up for work with a hangover, so work became a really good routine. I still drank on a weekend off or whatever but it wasn’t drinking to hide anymore. Maybe just a beer with my meal or over to the neighbours for a couple. But not drinking to get drunk. I had work to go to and I wasn’t leaning on the booze any longer to get me through the day. It was a massive, massive turning point for me.

People have always been important to me. I suppose they are to everyone. I mean you get your support from the people around you don’t you; it’s how we all cope. My own family have been there from the beginning of course, they’ve always been special. Mum and dad had four beautiful – and I mean beautiful – daughters and then they had me, which must have been hard on them. Well I know it was hard on them but there must have been some rewards too. Some of the accomplishments were quite big I guess and I know, being a dad myself now, that when your child succeeds in something it’s a great feeling.

They were very much pioneers my parents, yeah, pretty awesome advocates for me really. My dad was an engineer by trade and he used to work feverishly away at nights on wee ideas, gadgets and so on that would help me. Also I went to a mainstream school which was not exactly the norm then. I reckon it was that sort of attitude that’s enabled me to have the successes I’ve had. Why I’ve been able to work, drive a car, get married, have children, own a home and so on. It was them. They were always there for me, always treated me like a normal kid and I love them for that.

27 Steve Roome

When I did have a breakdown there was never any blame on my parents, never any blame at all. Looking back it was more the sort of why me questions you start asking at that age. I couldn’t understand it. Hell I was 13 years old and it only lasted for two days after all.

Two dingy days out of all that time, not too bad. I suppose it was more what you’d call a release really. It was… well, the sobbing, once I got started, that was the uncontrollable bit really. I was trying to stop – my sisters were trying to calm me – it was very upsetting for mum, she broke down as well. I could hear her in the kitchen. I hated upsetting her like that, I wanted to stop but, you know, I was confused. Frustrated I suppose. Going through puberty and things are happening to your body. I mean I’m already being pointed at, but then you’re getting zits on your face as well… it was all of those things compounded, and the why thing, the why question in you’re head. It had never happened before and I didn’t particularly enjoy the moment, yet to be honest I felt better for it. Probably a bit of a cliché but I felt, what, lighter somehow. Sort of “Whew!” and it didn’t go on for weeks or anything.

It didn’t happen again until I was around 22, a time when I started to think about where my life was at. Things that had happened in the different parts and stages of my life. I only had one girlfriend through the whole of high school whereas all my friends were having girlfriends right the way through. She was a lovely girl and we enjoyed knocking around together but once we left school we went our separate ways and there was no one until I met Jo, my kids’ mum. So, by the time I got to my early twenties it was like hey, you know, this is getting a bit much. I’d like to be settling down same as some of my mates, or going

28 The Man With No Arms & Other Stories

out and doing the party thing. I was sick of being the gooseberry in the middle. Not that any of my friends ever made me feel like that… I just felt that myself.

I met Jo through Telecom. I was working at Directory Assistance and Jo was a toll operator. Somebody had come through with the wrong number so she rung Directory and got me, which is where it all started.

I answered the phone and we both sort of thought, hmm, they sound alright. Then I suppose over a period of time you get a bit brave and do the flirty thing. I mean this had gone on for a good couple of months and so one day I thought “Christ man, what are ya, bite the bullet” and so I said, “Have you heard anything about me over there?” And she goes, “No, not really.” I desperately wanted to meet her of course but I thought I can’t just spring it on her, that wouldn’t be too kosher. And she goes “Heard what?” And so I just said it, “I’ve got no arms,” expecting the phone to disconnect. Expecting, you know, that’s it, see you later. Then I heard her say, “So, what’s that to me.” And it was like Wow! I’ve gotta meet this woman, now. I mean, she didn’t blink, it was unreal. Think about it, I’d gone the best part of my life up till then – the best part of my teenage years and young adulthood – thinking what would any woman see in a man with no arms. Believe me there were plenty of ladies over time I would’ve loved to have asked on a date or to the movies or dinner or what have you and didn’t. I wanted to put myself out there, but at the same time I didn’t want to be rejected, I didn’t want to hear “Oh Steve, you know, we’re just friends.” I couldn’t get the idea, ‘why would they,’ out of my head. Why would they date you Steve when they could have that fellow over there with the big muscly arms.

29 Steve Roome

30 The Man With No Arms & Other Stories

I guess it was Jo that made me realise there are – I don’t know if you’d call it an exception to the rule – but people out there who see people for the right reasons. See what’s in the heart and know that’s what counts. You can be any size, shape or whatever but it’s all within the heart and the head and I guess I hadn’t met a lady that actually thought that way before. So yeah, it was like Wow! Our first night we went out together we both came back smiling and I knew there was something special there. I was thoroughly enjoying it, thoroughly enjoying it.

I knew something was going to happen and eventually it did.

We ended up getting married, buying a home and having kids.

It was the biggest thing I’d ever done, getting married and having children. And to see those two beautiful children with arms and fingers and legs, everything, that… yeah, that was a proud, proud moment in my life. That my impairment didn’t actually have any effect on the kids, that was a big one. Yeah, it’d be a lie to say I wasn’t concerned – totally concerned – with the possibility of it being hereditary.

Naturally we approached my GP, and the gynaecologist as well, but they totally reassured us that what had happened to me was through medicine and therefore would be impossible to pass on. Even so – even though part of me thought who better to bring up an impaired child than someone with my experience – I guess… well, I know too much about the sort of hardships and prejudices that are out there.

Every time Jo had an appointment with the gynaecologist – and they would have a sonographer with the visualising thing on her belly – I’d be there counting all the digits. Is that an arm, is that a finger, oh yeah.

31 Steve Roome

We’d already lost two children before you see. Identical twins that passed away before they were born. That was hard that was, real hard.

And so yeah, I guess I had a lot on my mind, a lot of stuff I tried to keep in my head because I didn’t want to upset Jo. She’s a really awesome mum and I didn’t want to be freaking her out with any more worries than need be. I think we had really good communication most of the time and I knew what it was like for me as a father to lose those children but I’d never… I know it was devastating for both of us… but I’d never say I could know what Jo went through.

A year or so later we had something really good happen, our son Levi was born and he was perfect. It’s very hard to put into words what that meant to me. I had a marriage, a home, and now a child.

It was like the world was my oyster. I held those three things right up there shining bright, it was like once I’d achieved those milestones I felt whole. I felt human – like a man.

If I’m honest I guess I always felt I was competing against ablebodied men. It’s not that I have a competitive sort of nature, it’s more I didn’t feel like I was on an even par. So, being able to succeed in my job, in marriage, be a homeowner and have children, it was like hey, bring it on. I could do the same as others, if not better, and that was a lovely, lovely feeling.

My first child being a boy was pretty awesome too. There’s five kids in my own family and I’m the youngest. I’ve got four older sisters and as much as it’s great having four older sisters – I don’t know if this is a chauvinist thing or what – but I would have liked to be the older one, looking after my sisters. Having my son, Levi, first and then his sister,

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Crystal, follow only a year later, means they are very close. They have the best relationship and it’s nice to see my son being a good older brother to his sister, yeah.

Levi’s birth was a natural one and I got to cut the umbilical cord myself. The nurses were a bit spun out with that one at first. We’d had quite a long labour and a new shift came on right at the crucial point. I guess the way I was dressed at the time, with the gown, and underneath I used to wear these bulky things to make me look broader, so at a glance I suppose they hadn’t noticed anything different. Anyway my mum-in-law, Pam, was there too and she said, “Why don’t you let Steve cut the cord.” So they hand over these scissor things and out comes my foot, “Wow! What, you can’t do that.” “Yes I can,” snip snip and it’s done and they’re like, “We’ve never seen that before, we just…” They were more buzzed about this man cutting the cord with his feet than they were about everything going on. I don’t know how many other dads cut the umbilical cord but to me it seems like what every dad would want to do.

Crystal’s birth was a caesarean and that was something else.

I wasn’t too sure what to expect but I’m standing there and suddenly I’m watching the doctor disappear up to his elbows in Jo’s belly… that was like Wow, with a capital letter. They had a chair beside the bed and I sat down on that and just said to Jo, I’ll give you anything. After seeing that, it was like, you name it.

Holding them was awesome. I remember when we did the shopping together I’d be carrying one of them in the Capoochi and I’d have this little wee warm bundle and feel their toes and fingers and

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people would be coming up and oh God, my head would swell, huge.

Very, very hard to put into words that. Mostly I felt… complete. I guess that’s the word.

I didn’t get to lift Levi out of his cot for months. I was a bit terrified to really. I was scared stiff of dropping him, I was scared stiff of squeezing him too hard. I was afraid of nearly everything really. And it was just… just that I‘d never touched anything so fragile in all my life.

The first time I got Levi out of his cot was when Jo had gone down the road to do some shopping. He’d been fast asleep when she left but woke up with a few tears as soon as she’d gone. I don’t know why I thought I could do it that particular day but I did. I lay on my back and managed to get my foot under one arm and then my other foot under his other arm. I got this little baby up in the air and it was like,

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my God, don’t drop him now. But I got him down and ten minutes later when Jo came home we were on the floor with a pillow and it was yeah, I’ve done it. I’ve done it. I can do this now, and after that there was no stopping me with both of them. There was no way in the world I was going to let my impairment get in the way of all those dad things. To be a dad… yeah, that’s it isn’t it. Pretty bloody special.

When I got my job at Telecom, that’s when things really took off for me. Life started picking up and a lot of good things followed from that. I thought Telecom was absolutely special. Well, ask yourself, after all those years of trying to find a place for myself I found a niche with them and I loved it. Loved it. And people seemed to like me as well. I had 15 compliments over the years there and believe it or not, in Directory Assistance, that’s a hell of a lot of compliments. A lot of those people had taken the trouble to write in as well which was something else, it made you feel good about what you did. So when one day, eight or nine years later, Telecom says they’re restructuring, and if we want our jobs back we had to go through tests and what not, it was a bit of a shock. One I didn’t cope with too well at all.

They plugged us into a computer and it was like going back to school. Typing skills, listening skills, for every missed key there was a beep and someone on the other side of the partition monitoring it all. I think to most of us it all seemed pretty unfair, it did to me anyway. At least I was treated like everybody else and I suppose at the end of the day that’s what I’m always asking for. Looking back I guess it was too much pressure and I just couldn’t cope with it.

35 Steve Roome

I had this thing in my head all the time – if I don’t pass this what’s going to happen. I’m married now; I’ve got a young family to support.

In the end I flipped a bit and just walked out. Couldn’t cope. Mind you I wasn’t the only one. There were quite a few – staff who’d been there 20 or 30 years from the old Post Office. I guess it was the Telecom way of weeding us out.

I was off for a year after that. Got hooked up again with Workbridge but wasn’t able to find a job or even an interview really. One thing I still had though was a certain confidence, the knowledge that I could do things just as well as others. At least working at Telecom had given me that and I didn’t do anything stupid like going back on the drink or whatever.

Then one night I was going through the paper and I saw a piece about a guy who’d made a little placard – Job Wanted – and I thought Jesus, that’s a bloody good idea. So, over the next few days we made ourselves this huge – well, it was taller than I was – sign.

It started up the top – Job Wanted, Eight And A Half Years Call Centre Experience, Phone Steve – and it had the telephone number.

The morning after it was finished I dressed up in my suit looking a million bucks and went and stood on the corner where the Casino is and the Jolly Poacher pub. It was a good posse; lots of people coming into work, and near Noah’s car park with a lot of business people coming and going. I got there at about half past six on a real frosty morning and stood there most of the day.

Eventually The Press came down to have a look and Rick from 91ZM, the radio station, they came as well and offered me a week’s

36 The Man With No Arms & Other Stories

work with them. They had this huge promotion going where they were giving away a million dollars and I was going to be Steve, the Million Dollar Man. So, it was great for them and it was great for me to have a little bit of airtime, getting myself out there. I had a whole week with Rick and Trina in the studio. And every now and again, “You need me in your call centre, you need me in your call centre.” Not that I actually got a job directly through that in the end, but it kept me motivated, kept me in the public’s eye as well.

Anyway, not long after that Workbridge rung me and said they may have found something down at the Buy Sell and Exchange. So great, off I went to see Lisa Duncan, who was the boss then – awesome lady – and boom, she took me on. Part time to begin with, for a year, but that was something more than I’d had the day before.

You know, Lynn Hobson and Lisa Duncan have been the only two people in a position to hire me that were able to see past the no arms thing. And I’ll tell you another thing, there’d be a hell lot of people out there who wouldn’t remember what their bosses’ names were after so many years, but I remember those two. They were the ones that saw the capability rather than the disability and when you meet people like that… well, they get loyalty. I was very loyal. You’re going to be, ain’t you. Just common sense.

I worked for Buy, Sell and Exchange for what, must have been nearly five years. In many ways it was the opposite of my experience at Telecom, in that they promoted a bit of fun in the work place.

You could have a laugh and a joke cause I think they knew that a happy staff are actually a very productive staff. I was given more responsibility

37 Steve Roome

as well and I thrived on it. It was a great four or five years there and then somehow things all went down hill. I was having trouble with my body and much worse than that, Jo and I were falling apart. Things had started to go wrong at home and consequently things were starting to go wrong at work also. I started mucking up the ads, got money stuff wrong, faxed the wrong people, it was hopeless and in the end I finished up. For a time I guess I felt everything was finished.

I got very depressed. Very depressed. I truly thought that my only chance of being in a partnership – any sort of happiness like that – was over. All those doors that I’d tried so hard to open I now believed had closed on me again. I didn’t think I’d be attracted to anybody again and I certainly didn’t think anybody else would ever be attracted to me.

I suppose it took me back to that time when I was young and flatting and all my mates had girlfriends while I was always on my own. For almost 12 years I’d had this wonderful relationship – my marriage – and then bang, back to that. It was like, “Hey man, I don’t want to be here.” For the first eight months or so I went back to the drink as well and that was somewhere I definitely didn’t want to be. Meeting Jo and having the kids had made me feel complete as a man; I guess the opposite happened when that all fell apart. I didn’t feel whole any longer.

I was hurt and lost and angry all at the same time for about a year.

It took me that long to come to my senses. I was ringing the kids every couple of nights when I first moved out and it was hard hearing Jo’s voice, hard not to keep wishing things would go back to how they’d been. Time went on but and we got through all the various scenarios, birthdays, Christmas, anniversaries, all the difficult times

38 The Man With No Arms & Other Stories

and gradually we began to talk more. I was able to tell myself to be sensible. That I wasn’t ringing to hear her voice or have an argument, I was ringing to talk to the kids and I kept that as my focus. So yeah, as time went on we communicated more and more and I was able to understand that my disability, my impairment, wasn’t the reason we were apart. That people separate regardless of any sort of disability. They say time’s the great healer and in that respect I suppose it has been.

One of the things that drove me crazy when I was younger was people telling me I couldn’t do something. You’d apply for a job or whatever and there’d be some bugger piping up, “Oh no, you wouldn’t be able to do that.” That’d be guaranteed to get my attitude bubbling up to the surface. God, you know, I’ve done everything that any Kiwi boy has done. Swum in rivers, done the camping bit, Anakiwa Outward Bound, push bikes, eeling, pinching apples and running like hell when you get caught, you name it man I did it.

When I was first married we had a house with a huge garden, all of which I did myself. Mowed the lawns, dug all my own gardens, the works. And I loved it. Looking around, seeing what I’d done, it made me feel good. When people say you can’t do something there’s a pride in proving them wrong and sometimes it takes a while to see past the pride stuff. Because I use my feet for everything, my hips and so on have started to get worn out before their time. Old hips before they should be. Also a few years back I started to have falls; simple falls that most people would just get up and brush themselves off from but for me they were damaging falls. Bouncing back got a bit harder.

39 Steve Roome

Then a while back I got lucky and met a really good physiotherapist – she’s really fantastic – who’s made me realise it’s about the importance of preservation. She’s taught me some really good things, like the word interdependence. When I was first back living on my own I wanted to do it all myself. But then before I knew it I was having problems. Dropping pots of boiling water and God knows what else, but remember I was brought up with the attitude, “You can do it. You can do it yourself.” Well that was great for many years, and it’s been hard, even a few tears at times, to realise how much I need to re-think that. Think about the next ten years. It’s hard at 38 years old to know you’re going to be dependent on others sooner than most.

What I’m hoping interdependence will mean is not being in a home at 50. That maybe I can live by myself till I’m 60 or 65, which would be great. Whatever happens I’m going to do my best to stretch it out.

I’m still able to play with my kids now and I don’t want anything to stop me being part of their future.

Then there’s grandkids. One of my worst fears is my children bringing the grandkids to see me in a home when I’m in my fifties and they’d be standing there seeing their granddad fed by someone else. You show by example and I’d like my grandchildren to see me like I am today. I think that’s important. Yeah, that’s important.

It’s important to me, anyway.

To tell you honestly I’m bloody terrified – absolutely mortified – when I think about this. It’s not something I’ve discussed really with my family. Lee, my partner now, she’s more aware of my concerns than anybody I suppose. I really have what you’d call a dread –

40 The Man With No Arms & Other Stories

I dread the idea that I could be dependent on others. No one feels good about that.

It was brought home to me last year when I hurt my knee.

Suddenly I couldn’t feed myself, somebody else had to feed me. I couldn’t shower, and toileting was near impossible. Think about it.

Friends were coming round, sharing the load, which was pretty awesome. My mother was fantastic too, but, you know, she’s got to an age when you don’t want to be burdening somebody in their 70s like that. I mean as much as she’s a fantastic woman I often wonder how upsetting it may have been to see her son, who’s almost 40, being absolutely helpless. Anyway, enough of that. It goes through your mind at times but I should know now not to dwell on it.

That’s the sort of middle of the night bad stuff that can do your head in.

Meeting Lee was like a new go at life. Another slice of the cake.

I guess I thought, you know, the age I am, and the fact that I was never the best looking apple in the barrel – I just thought nothing like that was possible any more.

I was at a friend’s house, at a barbeque, when I saw her arrive.

She came walking up the driveway and I thought... well, I was gob smacked. She was just incredible. And we seemed to get on so great, I couldn’t believe it. God we yacked and yacked and yacked till three in the morning, I just hadn’t felt like that for ages. I can’t even remember the other people leaving or whatever. Yeah, it was unreal, like sparks in your head.

41 Steve Roome

So here’s the stupid thing, I said goodnight to her and didn’t even get her phone number. I’m like, “What was I thinking!” I did remember she’d said she worked for an audio hiring place and so the next day I’m going through the phone book ringing them all. Finally some helpful guy says, “Oh no, you want such and such,” and sure enough when I rang, Lee answered. “You took your time,” she says, and that was like – well, she couldn’t have said a better thing.

When Jo and I split I thought that would be it. I believed any chance at a relationship, any sort of partnership was gone from me.

But now I’ve been lucky enough to have that possibility again. I want it more than I can say but at the same time it worries me. It’s like we’re born dependent. We grow through childhood and become independent and then we get older and become dependent again.

What’s worrying is the possibility of this happening to me sooner than some. The last thing I would want is to put that burden on Lee. That’s what I think in my head. But then when we’re together and I close my eyes and her perfume and my foot touching hers, that’s a feeling… that’s a feeling I want to keep forever.

42 The Man With No Arms & Other Stories

43 Steve Roome

The Man With No Arms & Other Stories

Greg and Sally Thomas

Sally – I don’t know, I think some women have this dream about a magical day when they’re going to be carried off in a glass coach or something but I never did. I can’t ever remember wanting such a thing.

Not even as a child.

It mightn’t seem like it now but I think I was quite shy when I was younger. As a teenager I had a group of quite close friends but I didn’t really start going out and socialising in that way until I’d left school and gone to Polytech. Of course, once I got taste for it, that was it, there was no holding me back. They were good times actually, really good times. I loved going to the clubs, I loved the music, and there were a great lot of live bands around. Every pub had a live band, live music. Yeah, they were great days.

Funny when you think back to it all, I suppose what brought us together was the music. I’d gone to The Adams Apple, it was a nightclub in Lichfield Street. The scene was quite different then of course, you had these big barn-like pubs and only a very small number of clubs. It’s much nicer now with all these wee bars everywhere.

Anyway, it was as simple as that. I’d gone with a friend to listen to a particular band – we were always in there, drinking under age, you didn’t need ID or anything like it in those days – and Greg had done the same. That’s how we met, on the dance floor. I thought he looked pretty damn good. He still does.

He was living at the marae then, the Rehua marae. He’d come down to Christchurch on the Maori trades scheme so the place was new to him. I think he’d only been here six months or so when I met him. At the end of the night we exchanged phone numbers. I must

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have been, what, about 17 I guess, but yeah, I liked him. I though he was really nice. I can’t actually remember who rang who first – I don’t think I would have been so bold as to ring him – but perhaps I did.

Greg – I came from the North where the people who lived next door were more like family than neighbours, the sort of place where everyone knew everyone and people looked out for each other. If you went fishing you didn’t keep it all to yourself. The fish got shared around. It might be the backblocks but you learn a few things growing up in a place like that.

Our town, Dargaville, was about 4,000 people and ethnically a very mixed group. Probably a third Maori, a third Yugoslav/Dalmatian immigrants and the rest a mixture of Pakeha, Pacific Islanders, and so on. It made for a very good community. A lot of intermarriage between the various groups and I suppose it just had this kinda big extended family feel to it all. We lived very close to the church, in fact we lived right next door to the convent which still had around eight or nine nuns in it. Inevitably we had a somewhat Catholic upbringing. My mother was very pro the idea of a Christian environment, my father not so much. We all went to Catholic primary schools and my brothers – I was the youngest of four boys and one girl – went off to boarding school in Auckland.

I recall the nuns as being pretty strict in their teaching methods, strategies that wouldn’t go down too well today – if you don’t do this you’re going burn in hell sort of thing – but on the whole it was okay.

I mean I don’t sit round sticking pins in nun dolls or anything.

49 Greg and Sally Thomas

I suppose I felt they were tough but fair; I’ve certainly come out the other side without any repercussions or animosity towards them.

I’m not a particularly religious person now but it did leave me with a certain sort of legacy. Little things, like my mother never allowed swearing in the house so even after all this time you’ll hardly ever hear me swear. Also, I suppose, larger ideas of marriage and relationships that mean something to me still. Not the sacred sanctity of Christian teachings perhaps but the idea that relationships between people are important. Things like that feel kinda ingrained in my life.

I chose to be a blue-collar worker like my father which was probably something of a disappointment to my mother. The others all actually left school with some sort of qualification and went straight into white-collar jobs, worked with the Post Office and Post Bank sort of stuff, but the idea of being inside all day – eight hours – just didn’t sit with me. I was physically mature too so manual work was something I liked. And sport as well, that was important. Rugby I was right into and also surfing, that was really big. I guess you could say I came from a family of surfers. Back in the sixties and seventies my brothers kinda pioneered surfing in parts of Northland and obviously they were a pretty big influence on me as well. I got the typical kid brother treatment of course, pretty much cast aside and in the background. Maybe get to go on some trips with them, stand on the beach and watch sort of thing. Even so, surfing became real big for me, central to my life in many ways. Yeah, it’s influenced much of the travelling I’ve done and truth be told, probably my whole choice of career and lifestyle. There wouldn’t be a day when it doesn’t

50 The Man With No Arms & Other Stories

figure somewhere in my thinking, even if it’s just about the weather.

It was quite a chance really that Sally and I actually met – I suppose it almost always is – but you know, I was from the North and she grew up down here in the South. When I left school, apart from knowing I didn’t want to work in an office, I didn’t know what I wanted to do. Then I got involved in this government scheme for Maori boys who wanted to enter the trades. I had a real interest in trucks and so I applied to do an apprenticeship as a diesel mechanic. Unfortunately I didn’t get it but at the time we applied we had to put down a second choice, I’d asked for painting and decorating and that was the area they put me into. It was only sometime later that I realised it was in Christchurch – that I’d actually have to go and live in Christchurch, something that didn’t thrill me at all.

I was 16 when I arrived in what we thought of then as the big smoke. I mean picture it, for some of those boys it was like the first time they’d been in a place with more than 500 people. Particularly some of those from the rural Bay of Plenty. One guy was so rural he’d never had hot water. It was a real big learning curve for all of us and with no sort of extended family to stand guard we most likely ran a little wild – just a little bit. I met Sally in a nightclub sort of place that we probably weren’t even supposed to be in.

Sally – When I meet Greg there didn’t seem to be many Maori living in Christchurch. Maybe it was the trade scheme that started bringing more young men to the city. I’m not even sure when the scheme started, maybe in the fifties sometime. I do remember there was some

51 Greg and Sally Thomas

terrible racism around Christchurch at that time. There probably still is, though I don’t notice it to the same degree. Certainly it was blatantly apparent in the seventies.

I’m not sure how much it affected Greg. I know he was quite a shy guy then and moving from such a small place, where you’re so well known, to a much larger city must have been a big thing for him.

I suppose when I think about it, the racist stuff, it was pretty subtle at times. I don’t know that we ever really discussed it much but yeah, you knew it was there. You could feel it about you floating in the air.

I had a girlfriend – she was a very close friend of mine in those days – who came from a fairly well off family. I suppose back then they thought of themselves as quite upper-crust, anyway she went out with a Maori boy as well. It didn’t seem to worry her father so much but her mother obviously didn’t approve at all. She was definitely against it. The girl married someone else in the end but I don’t believe she ever forgot this boy. I think it sort of ruined her life in a way. To be honest I don’t even know what my own parents may have thought at the time. Both of them were born in Ashburton and I don’t know if they ever knew any Maori there. Perhaps it wouldn’t have been their ideal situation – I don’t know. It’s sort of interesting to think about but anyway, I didn’t care.

It must have been the second year I knew Greg that I went up to Dargaville and met his family. Ros, who’s now my sister-in-law, was there with Greg’s brother Barry for the first time as well. We were the new kids on the block with me very much a city girl. It was completely different to anything I was used to. Greg’s dad is quite a gruff sort of

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guy and one of the first things he said was, “If you don’t help yourself around here, you starve!” I’m thinking God, you know, what’s all this.

Ros and I still laugh about that first time. Putting the hangi down it was all hands on deck, all of it completely new to me, I didn’t have a clue.

Now I just love it. I guess I’ve been very very lucky to experience two different sorts of lives. A lot of people don’t get that sort of privilege.

I’m also very glad I travelled when I did because I think living in New Zealand – particularly in the seventies and eighties – we had a very narrow view of the world. Getting out, seeing the world, or at least a bit more of it, widens your whole outlook on life. Helps you broaden your horizons and makes you look at things differently, or perhaps accept things in a different way. Especially if when you travel you don’t try and live like a Kiwi. The thing is to get out there and be doing things like the locals. Taking part in the things they do, eating the food they eat. That’s the way into a different culture – to understand the world a little better.

Something I like about New Zealand now is the way it’s becoming more and more multi-cultural. Some of the families I work with are quite different; Russians, Nigerians, all sorts, and I really enjoy that.

It’s so damn interesting. Learning about their customs, the way they think about life, yeah, I like that a lot. Perhaps I get it from meeting Greg and his family, perhaps it’s something I would have felt anyway.

Whatever, it’s great isn’t it. I just love it.

Greg – For me there’s definitely a cultural aspect to the way we work as a family. Living in a tiny rural town in the sixties meant my family

53 Greg and Sally Thomas

still held onto those traditional Maori values of the extended family, relatives were important. When I was young we had lots of contact with the larger group and I kinda learnt the importance of all things family. How the family looked after everyone at funerals and so on, I always felt a great sense of togetherness on those sorts of occasions.

I suspect it’s the same for big Pakeha families at those times.

I feel really privileged to have meet most of my mother’s side of the family and the same with my father’s family. It’s something I’d dearly love my kids to keep on with. I’m not so sure it will continue to happen as it did in my day, but it’s something I would like my kids to know. We have extended family right through the North Island and whenever we travelled through, you know, we’d always be sure to make contact if we could. Of course what would happen is you’d stop off for a cup of tea and six hours later you’d be so full of food you’d hardly be able to move. You might have to loosen your belt a little but it certainly makes you realise you are part of something.

Sally – When did we get serious? I’m not sure I can remember any one particular moment. It was like one minute we didn’t know each other and then we did. How do these things ever happen? One night I went to a club, the next thing we were going out together.

We weren’t living together. Greg had a flat in Champion Street and I lived at home. Ha, it was cheaper, much cheaper, and mum’s cooking was very good. The truth is I was saving furiously at the time because I really, really wanted to go overseas. I had my heart set on that. It took a while though, quite a while in fact. I must have known Greg nearly

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four years before I went. I spent time with his parents up north and they came down here as well. Actually, in the end I went to Europe with Ros, my sister-in-law. Of course neither of us were married then but that’s how we met, at Greg’s parents’ place.

At the time I went away I had no idea at all about what would happen. We left from Auckland airport and both Greg and Barry came to say goodbye. Ros and I laugh about it now but on the day we were all quite affected, all a bit sad. We got on the plane with very long faces but by the time we’d had a few gins we’d started to smile again.

Then we had a few more and it all started to feel incredibly exciting.

Hell I’d never been out of the country before, never even been to Australia, and here we were flying to Hong Kong and beyond.

We were pretty revved up by all the possibilities that lay before us.

Perhaps there was something else as well, perhaps the excitement covered over the emotions we both felt about leaving someone behind.

We got off the plane in London and within a very short time found ourselves living in a zoo. It’s true! Ros was feeding hyenas, monkeys and all sorts of other animals and I was working as a cook cum chauffeur cum tour guide. We’d really wanted to get a live-in bar job in London but they proved hard to find at the time and so we ended up working for a private zoo. Not a thing I would ever have imagined before it happened but that’s life all over isn’t it.

There were 20 of us worked there. French, Germans, Swiss, a lot of different nationalities, it was wonderful really. Absolutely fantastic and at the same time a little strange. The woman who owned the

55 Greg and Sally Thomas

place was Finnish and her husband was an alcoholic. As well as doing the cooking I was basically his chauffeur. I also met the school buses and did the tours. I’d never done anything like it before and I loved it. Ros and I were having a laugh just the other day talking about this woman, remembering how she was. Very bloody difficult and extremely temperamental are a few of the words that came to mind.

Everyone who worked at the zoo was terrified of her. Well, one day I’d just had a gutsful and I turned on her, absolutely exploded with some very ripe language and everyone stood there with their mouths wide open. And I mean wide open. But bugger it, you know; I just thought that’s it. That’s enough. I’m not going to have anyone talk to me like this. And guess what, instant respect. Her attitude completely changed. It was like I’d suddenly been put on a pedestal. Her husband was rapt. “God that was good. No one’s ever stood up to her before.

Good on you, good on you.” Later, after I’d spent a bit of time in Europe, I was invited back to take charge of the place while they went off on some trip.

Twelve months after we arrived, Greg turned up. It was quite bizarre actually because I’d sort of got used to being on my own.

I’d learnt to be independent – that I was absolutely fine on my own – and I wasn’t sure if what I’d had before was what I wanted now.

Ros at that point was going back home. She only stayed for the year but I wanted to stay longer. There were still things I wanted to do.

I guess when you’re young and fancy-free there’s a feeling that anything could happen.

56 The Man With No Arms & Other Stories

By this time I was working for an antique dealer in Honiton, which is down in Devon. Greg had got himself a really good job working as a waiter in some high-class hotel in London. I used to commute up to London to catch up with him.

Then he moved out to the coast, to Newquay, because of the surf.

It’s a really big thing with him the surf. We actually ended up spending Christmas there together. He was living in this caravan thing out in the middle of nowhere. The weather was total crap that year but in the end we didn’t care. We had such good time, one of the great times.

Greg had this tape of the first Dire Straits album and I’d never heard it before. Hell, I’d never even heard of them. Funny isn’t it, whenever I hear it these days I’m right back in that little caravan and the time we had there together.

He’d got this job in a big hotel there at Newquay and eventually I got a job there myself, as a chambermaid. Yeah, he was a waiter and I was a chambermaid. Sounds like one of those British movies doesn’t it. Eventually we put enough money away to take a trip around Russia, Poland and Scandinavia, all in a double-decker bus. That was really something else. The world seemed a little different after that trip.

It wasn’t really too long after that that I returned to New Zealand.

It was a funny feeling really; I just couldn’t seem to settle. After all I’d seen and done life back here seemed a little shallow somehow. It’s true that travel completely changes the way you look at things – I suppose in actual fact it’s the experiences you have – but having rubbed shoulders with all sorts of different people you’re less likely to be stuck in your own little world, less ready to judge others than you might once have been.

57 Greg and Sally Thomas

Greg – When I was still quite young I’d planned a really big surf trip to Europe. I was actually supposed to be going with a friend but he pulled out in the end so I went on my own. As it happened Sally had gone off to England some time before and we met up again over there.

I think I was working at the Hyde Park Hotel at the time as a waiter, silver service and all that sort of thing. Probably the hardest job I’ve ever had. I’d never done it before but you know how it is, just learnt on the job, traded on the Kiwi rep for being adaptable and hard working.

We went on a few trips together while we were there, mostly places I wanted to surf but we did also go to Russia at one point. I must admit there was a bit of a trade off there, I’m thinking Jeez, Russia, you know, not really. But hey, that trip – it was only about three weeks I think – not that long at all but it’s given me lasting memories. Just with it being a different country you learn a lot about yourself and different situations. Well, experiencing all these other cultures I guess you do a lot of learning full stop.

After all that travelling we parted company again and I ended up back in Australia. My parents were living there by then, in Sydney.

By the time Sally got back to New Zealand I think she was at a bit of a loose end. A lot of her friends had left and things were different from how they’d been before she went. Somehow she didn’t seem to fit back into the groove sort of thing and so she came over to Sydney.

That must have been the early eighties and we’ve been together pretty much ever since. We had a really great three or fours years there. No kids, both working, plenty of money. I’d found a job programming

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laundry machinery; I’d managed to get the afternoon shift which meant I could spend all day at the beach. Yeah, they were good times.

Sally – Being with Greg over those years had been pretty special.

It wasn’t exactly an on-again off-again relationship but it was pretty relaxed. We both felt free to come and go, to meet other people – probably not the done thing in those days – but I felt really quite comfortable with the whole situation. I guess I thought that doing things that way you were more likely to end up with the right person, someone you were really sure about, rather than getting into a routine that’s all so comfortable it just becomes a habit.

In the time we’d been away Greg’s parents had shifted to Sydney and when he left Britain that’s where he went as well. It wasn’t too long before I joined him there. He’d found himself work in a hospital laundry on the afternoon shift, three to eleven at night which meant, of course, he could be in the surf all day long. It didn’t take me long to realise it wasn’t going to work if I had a day job, so I got a job in the laundry as well. Actually it was great. We’d go out socialising at night after work, maybe have a few beers with the people we worked with and then we’d be off to the beach during the day. The only thing we had to do was be back at work by three in the afternoon. It was pretty idyllic actually.

We lived with Greg’s parents till we managed to get a lovely little garden flat at Ryde. We could walk to work from where we lived so it was all perfect really. It was in Sydney that we decided to get married.

I mean we’d been living together for ages so it wasn’t that things

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changed drastically – we felt just the same – it was more about making that true commitment I suppose. And about children as well. I wouldn’t have wanted to have children and not be married. That’s pretty weird isn’t it. Probably because of my parents. Mum and dad were in Europe themselves at the time but I guess I felt my parents would never really approve of something like that. Perhaps that was it. In the end I rang mum and dad and asked would they mind if we got married in a registry office, which is what we did. Very low key, very relaxed. As I said before, I never fancied getting married in a pavlova dress. Greg’s parents, and his cousin who happened to be there at the time, that was it really, that’s how we did it. Married in the registry office and out for dinner afterwards.

Greg – We had all this money we’d saved and at one point we were going to blow it all again on more travel. Africa, India, Tibet, we were keen to go to all of them but then we also started to think about coming back and starting all over again from scratch. It was probably that that got us thinking about going back to New Zealand and buying a house. Settling down, white picket fence and all that.

Something else we um’d and ah’d about was the wedding itself.

Sally comes from a fairly big family as do I which logistically meant a large wedding, something that might well cost us a large part – if not all – of our savings. Certainly from my point of view I wouldn’t have been able to exclude anyone from both sides of my family. It’s just our way, everyone’s invited, up to you if you come or not. That’s how my brother did it and he ended up with 200 people, cost him a fortune.

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Also Sally’s parents were away at the time in Europe and anyway we kinda didn’t want a huge occasion with the spotlight just on us.

In the end, the choice between all that and the Ryde Civic Council registry office – only 50 yards from our front door and costing 40 bucks – seemed like, well, a bit of a foregone conclusion. Yeah, I think we felt pretty happy to keep it all low key.

Mind you, even though we’d chosen a registry office over a church we weren’t unaware of the significance of the occasion. On the morning, like any groom, I was slightly nervous for no reason at all other than hey, I’m getting married, and then it’s done and we’re walking home all smiles and feeling very happy. No drama at all.

We did have my cousin arrive unexpectedly from Brisbane. She’d just come down and found all this happening so we asked her to be one of our witnesses and she was over the moon. After it was all done, dad, god bless him, shouted us our wedding tea.

Actually, growing up and seeing my own family – my parents’ relationship – I suppose it gave me a certain point of view when it came to marriage. I think they have a good relationship. My father was very hard working and so was my mother. No doubt there were periods when like anyone else they had their ups and downs but somehow it seemed that when there was pressure, or any sort of stress that affected their relationship, they were able to manage it. They were able to put it in perspective and stay clear of the statistics.

The thing is of course peoples’ lives don’t always go in a straight line. While there’s always going to be some sort of growth over time, whether or not that growth is in line with the growth of the

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relationship is another question. To put it simply, some people just grow apart. Their interests change, they change, and if they are in a relationship where they are really unhappy, where things have become stagnant and they are continually stressed, then maybe that’s a place they have to get out of. I think it would be the saddest thing in the world to go along with that. To be absolutely miserable for the rest of your life, that would be very sad indeed.

I don’t put myself up as any sort of expert but I think communication is the important thing, or at least it’s pretty near the top. If you’ve got a good flow going in your relationship it means you’ve got good communication of some sort. I mean if you’re not talking, if you’re too wound up in your own little world, and she’s wound up in hers, those worlds are likely to get wobbly enough to fly off in different directions.

Sally and I talk about most things, the kids, our work, each other, I don’t know that it’s a kinda blueprint or anything but when we compare ourselves to some of our friends that have split we just sort of count our blessings. Nothing more than that, just count our blessings we haven’t had to go through those problems. No, and some of those people have children of course and that’s really a place I never want to be.

Back in my parents’ day the roles people played in a marriage were fairly rigidly defined. Although my mother worked it wasn’t always the case. Many women were seen as homemakers and dad was seen as the breadwinner. We look at it as more of a teamwork thing. I think both of us view our roles quite differently than our parents did. We share the burden; the day to day running around after the kids and so on where as, for example, I think my mother would have done all that back in her time.

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There’s another thing as well that’s got to do with the long-term togetherness of a relationship, and that’s the way in which you form a better understanding of each other’s direction. You know what she would and wouldn’t want and she knows how you feel about certain things. Over time you go through a lot of stuff – the birth of your children and so on – that gives you a deeper understanding of each other and the many sorts of issues that come from being a family.

Don’t get me wrong; we don’t wallow in our self-achievement or anything like that but we do kinda have the sense that we must have done something right. We have a good relationship and the kids haven’t gone off the rails but we never feel complacent about that.

We probably more view it like we’ve been fortunate in the way things have gone for us. I’d never run around with my chest stuck out saying how clever we are, no, it’s more just luck, or blessed that one or two things have gone our way.

Sally – In all we lived in Sydney for around four years and because we earned good money we actually managed to save heaps. The thing was though, while we were having a great time in Sydney we both knew somehow it wasn’t forever. I think both of us felt we didn’t want to bring up kids there so I guess it was always going to happen that we’d find ourselves back in Christchurch. By the time we did we’d amassed a pretty good amount, enough at least for a substantial deposit on a lovely old villa in St Albans.

By the time our first wedding anniversary came around the twins, James and Alex, had been born. The pregnancy was good – unexpected

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really; well, not unexpected, but it happened very quickly – very exciting. I worked up until about the 28th week and then two or three weeks later I got shipped off to hospital with high blood pressure.

The verdict was bed rest and I ended up there for nearly a fortnight before they were born. All that time in hospital, it gives you a bit of a feeling for what it must be like in prison and then being let out into the real world again. Your life begins to revolve around what’s happening within those four walls, the same routine every day. You don’t think about the things that are still going on in the outside world. In a way it was quite scary to find myself going home. All of a sudden you’re on your own. Yesterday you had others making all the decisions for you; today, now, you’d got to make them for yourself.

They were born seven weeks early which was worrying in those days but in the end – when we arrived home with our ready-made family – I thought well, you know, to have gone through all this but then to end up with two beautiful babies it’s not too bad at all. Being a first time mum I hadn’t thought about how much work it was all going to be. Also we’d been away for such a long time and you sort of lose touch with people, people move on. You find yourself stuck at home in the middle of winter with two premature babies, you don’t venture out much at all. I suppose I was probably quite lonely during that time. Still, that’s something we get over, things change, and life goes on doesn’t it.

Greg – It was all very unexpected. We’d only been back a bit and Sally starts feeling a bit unwell but then it turns out she’s pregnant. It was

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out of the blue really; I suppose we’d planned to leave it a little bit longer, just to get ourselves financially squared away but the truth is we were both anticipating starting a family and so we were pretty happy about it. I guess I was kinda excited about it all and then about 16 weeks into the pregnancy Sally had another test and came home to tell me it was twins. I’m like, whoa! I seem to remember us thinking if it was a boy and a girl that’d be pretty good, a ready made family and we might call it quits. But then I’m also thinking if it was boys, you know, I kinda had hopes that they might have some interest in the things I liked myself. Having a pretty traditional Kiwi background I suppose that meant things like rugby and so on. It was what I’d grown up with and loved so really I just wanted the same for them. To a large extent I guess that’s what happened, except, of course, for Alex.

Sally – I don’t remember an exact day, an exact time, but somewhere I began to notice differences. Small, infinitesimal really at first, but then more and more obvious until there was quite a marked discrepancy between what Alex was doing and the things James was capable of.

The doctors and Plunket and so on were reassuring, “Don’t worry about it. Babies develop at different rates.” Which is absolutely true and part of me was reassured by that, comforted by that. I mean if they’re not worried about it, we shouldn’t worry either, right? But you are a mother, you’re there all the time and in your mind you hear a small voice saying, “I’m not sure that’s right.” And in your heart you find a little sliver of ice has lodged there. Something that’s hard to put a name to but something you feel none-the-less.

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Alex wasn’t diagnosed until he was over a year old. By that time James was running around all over the place, into everything. Alex was still lying there, doing not so much at all. People have varying views on this; whether it’s easier to know the situation right away – at the time of birth – or later, when you have come to know your child and accept them for who they are. For myself, I’m glad we got to know Alex as Alex, just as we did James. That we got to know him as a person – thought of him as a person first – rather than as a disabled person.

If there is one day in my life I remember it’s the day Alex was diagnosed. A day of sharpness and fog. I knew – I knew – in my heart I knew, but to hear the words, that was like a bomb dropping on you.

We went into the room and the paediatrician just said it. He’s got cerebral palsy. There wasn’t a lot of explanation and we left without

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asking any questions about it at all. Well, you’re… you’re devastated.

Your whole life – the we’ll do this, we’ll do that – suddenly no longer exists. The map of your life gets scrunched up and thrown away.

Everything changes in a moment and what’s left, staring you in the face, is the knowledge that health is everything and if you don’t have it, nothing, not disbelief, not wishful thinking, not all the money in the world, nothing, nothing… nothing at all, can fix it. And because we couldn’t change it we finally had to focus on doing the best we could for Alex, and for James – and for all of us.

Greg – What you are is anxious, very very anxious. You have the appointment and the whole day you are walking around in a cold sweat, Then finally you go in to see the paediatrician and he has all these diagrams and stuff and you… you know someone’s talking to you but it’s not real, you’re not paying attention. You can see the pictures where they have pinpointed the area that’s damaged but it’s only one small area and you can’t comprehend, you can’t understand how it can kinda lead to such a total physical disability. It’s a very stark approach this whole medical model, “This, and this, is what’s happened, and this is the long term prognosis.” All so black and white and no softening at the edges at all. In hindsight it was probably quite good. I’d have hated them to have beaten around the bush and not laid things out for us as they did. But, maybe something just a little more human… perhaps a cup of tea, or even something a little stronger wouldn’t have been out of place.

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You walk out of the room then and there’s this whole range of emotions. Pretty much the shock at first, that initial shock, and then comes helplessness. You might have all the skills in the world but nothing, absolutely nothing prepares you for this. You stand there looking everywhere and nowhere at the same time and perhaps that’s when a little bit of denial will sneak in. You’re just clutching on to whatever you can… you don’t want to believe what you’ve been told, that the diagnosis is as bad as they’ve said.

It was a pretty strange time for a while I guess. You have to tell people, family and friends and so on and that was hard. Telling my mother was very upsetting. And… I don’t know about guilt but I remember telling some of our friends, especially male friends and there was a kinda feeling of maybe this is partly my fault. Other times you could feel annoyed by sympathy, or alienated because people weren’t paying you enough attention. You’re just awash with a whole mixture of emotions and not really thinking very coherently.

It was perhaps a week before we got some sort of control back and started to think about what needed to be done. You can understand how chaotic and destructive it could be for a relationship if you weren’t both heading in the same direction. I think both Sally and I felt we had to find a way to move forward with it. Find a way of dealing with it.

Of course there was a profound sadness but we weren’t going to let it hang around us. We weren’t going to sit in a corner and gasp like stunned mullets. We just set out to find the best way forward, to do the best we could for our son.

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Sally – The first day I took Alex to Early Intervention I sat there thinking, “I just don’t want to be here. This is not what I had in mind at all.” But then a young woman came up to me – her child was a little older than Alex – “Come on,” she said, “The kids will be all right. Lets go and have a cup of coffee.” And it did help. She helped me that day.

That was special. It’s easy to forget how much goodness there is in the world.

The people I met there are still friends now. I suppose when you feel like a square peg in a round hole it’s comforting to have others around you helping to put things in perspective. Part of you is still living in a land of fog and yet you find yourself having to constantly explain to others what has happened. Well-meaning people seem to be bombarding you with questions so that you feel like you should have a cassette with your life story on it to give them. It’s not a bad time to be amongst people who can help you understand it all. People who have gone through it themselves.

I guess peoples’ coping mechanisms work in different ways don’t they. For me… well, even your family are saying don’t worry. It’ll come right – trying to help you through things. And I think probably, when we first became involved with Early Intervention I was saying to myself, “By the time he’s five he’s going to be okay.” I had this sort of vision that he’d be okay by then. Well he wasn’t… and then gradually, over time, you start to come to terms with the fact that he’s like everybody else – he will be who he’s going to be. The more time goes on the closer you come to some sort of realisation, or perhaps I should say we all come to deal with things in the best way we can.

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By the time Alex got to be around seven or so I’d started to become a lot more realistic about what the future held for us. Perhaps, even then, not as realistic as Greg was but at least I was no longer looking through some sort of veil. I became more real about everything and because of that I felt a huge weight lift off my shoulders. I hadn’t realised the sort of pressure I’d felt all those years, wanting – wishing – so much for the next step to happen, rather than enjoying what he was achieving at that point in time. When I got beyond that, it was a real relief. There was a joy, of course, in helping to move him forward but I was no longer constantly wishing for things that perhaps he was never going to be able to do. That sort of acceptance comes at different times for different people and perhaps for some, well, perhaps it never does.

In many ways we were lucky. While there is still a long way to go with regards to many aspects of disabilities it wasn’t that long ago that parents were simply advised to put their children into institutions and that was the way it was. That was the option presented to people and that’s what happened. Hell it was only 20 years ago you still heard horror stories of doctors telling families to, “Just put the child in a cot, feed them, give them the basics, but don’t show them any love. Leave them alone and hopefully they’ll pass on.” These days the foregone conclusion tends to be that such children will live in a normal situation with their families, in their own home, which has been our experience.

No one knows what the future will hold for us. And no one ever knows what the capabilities of any child are going to be. I do know that if you have low expectations the chances are achievements will

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also be low. If on the other hand you give any child the chance to excel the possibilities are great indeed.

The one thing I do wish is that we’d got into the Early Intervention group sooner than we did. There was a lot of support from the social workers for Alex, which was fantastic, but the greatest thing for me was the other parents, these other families who were such a help.

Having a child diagnosed with a disability can leave you staring out into the unknown, unsure of what the future is going to bring and wondering how in the hell you are going to deal with whatever comes.

Meeting with others – other families who had already coped with such things – was really important to us. It gave you something to aspire to and it gave you really practical experience. “At this age our child was doing that also and this is what worked for us.” It was advice more valuable than gold.

We were in a fantastic group. Everybody got on well with each other. We started off meeting for a cup of tea and having speakers and so on but after a while we moved on to shared lunches at each other’s place and even to glasses of wine and going out to dinner together.

That meant our husbands were able to come as well which was fantastic. Often they were out at work during the day and couldn’t get involved in the day-to-day Early Intervention group but of course they were just as much in need of support and the chance to communicate with others as us mothers were.

One lot I do take my hat off to are those parents who are doing this all on their own. Amazing is the word that comes to mind.

My own experience has taught me the tremendous importance of

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having a partner in dealing with something like this. I mean we’re making decisions that under normal circumstances Alex would be making for himself. We are deciding – and will be for as long as we live – how Alex’s life will be, and that’s a role we take very seriously.

It’s a huge responsibility and many times I’ve thought to myself, you know, what if that decision was a mistake – what if that wasn’t the right thing to do. And while Greg and I might have different ideas at times, different thoughts about the way something should happen, there’s a huge comfort in having someone to discuss this with, someone you share the responsibility with. The thought of doing this on my own, I guess…

I guess I would cope, but the thought is not a pleasant one.

We’re lucky I think to have such a strong relationship, such strong family bonds. I know research has been done on the number of relationships that flounder under the pressure of coping with a child that is disabled and the percentage is quite high. These days, with the Ministry of Health seemingly pulling back more and more on the funding that gives parents a chance to take a break, one can only assume it will get worse before it gets better. The importance of parents being given the chance to take a break – just to stand aside for a moment and be able to spend time together – is extremely undervalued.

And it’s not the people at the grass roots who are the problem, it’s more about people sitting in government offices having visions in their own head about how a society should act, or how as a community we should function. I mean for goodness sake, to come up with ideas like, “You’re going to be at home with an under-five year old anyway,” is rather short sighted. In fact as a mother of four I can tell you it’s bloody ridiculous.

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Greg – When James and Alex were little they were very close and because Alex never really went outside, just kinda played around on the floor, James did much the same. Then as they got older, at kindergarten and such, James had more and more friends of the same age and naturally he would go outside with them and play. Alex, of course, was left inside and I can remember the sadness I felt in seeing that. I suppose it’s much the same sadness I feel today when James – whom I’m very proud of – goes off and does his thing with his mates.

Watching him as he went off to the school formals or just off to the pub as he does now with his mates, you feel really good for him and at the same time you feel the sadness that Alex may never attend at that sort of social level.

Having said that, Alex is actually off with a young lady tomorrow night. She and he have an absolutely terrific time whenever they

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get together. They just seem to spend all their time laughing with each other; it’s like a kinda laughing relationship and they do say it’s the best sort of medicine don’t they. You know, I bet a lot of people would be envious of such a good friendship. They are simply happy in each other’s company and when you think about it, isn’t that what everybody’s searching for. It’s one of the things we realised early on about Alex, that he had a very good sense of humour. He actually loves the sound of laughter and that is something that makes me feel good. I know that to an outsider his life might seem quite dull but he has his own understanding of what’s going on around him. Any sort of slapstick is a hit with him, the buskers festival they have here now every year is a real big thing for Alex. Watching him laugh, seeing him happy, well it’s what any parent would want for their child isn’t it.

Sometimes it seems difficult for others to know how to act or respond around Alex, you’ll have people talking to him in this kind of baby voice, like a three year old sort of thing, even people who you’d think would know better. And occasionally at those times you’ll see his head come up and he’ll look over at you and give that, ‘are they for real,’ sort of look. He may be a placid sort of person with a very loving type of nature but if people make assumptions about him, because of the way he looks, or because he has no speech, he’s not above having a subtle nudge at their own lack of perception. Personally I’m probably over that really, I don’t get as upset as I might have once. I just say, “Actually, you know, he can understand.” But generally I don’t get annoyed at the way people act because they simply don’t know any better. Of course if it’s someone he’s likely to meet on a regular basis,

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or maybe a member of the family or something, I’ll just say, “Look, he’s fine with you talking normally, he can understand you.” You’d be surprised at the number of people though who keep forgetting.

Sally – Transitions can be difficult times for us, for Alex. He didn’t start school until he was six and while going off to school is a big thing for any child, there was just so much more involved with him.

I mean with the other boys you drop them off, pick them up, liaise with the teacher on the odd occasion, attend the parent interview and that’s about where it stops. Over the years they come home and you’ll ask them what sort of day they’ve had and they’ll say this happened or that happened, or more likely still they’ll just give you a grunt.

With Alex it’s been altogether more complex. You’re constantly involved, constantly advocating, always trying to make sure things are done in the right way. Because Alex is non-verbal you have to do things like write in a communication book on a daily basis, just to make sure there is a constant dialogue between the school and you.

At different times that’s became a problem because a teacher might not realise how important the communication is to families. On the whole I’d say there are some amazing teachers out there, many of the people we’ve met in education have been really really great but there’ve also been times when a teacher’s vision can be different than your own. Times when relationships can get rather strained and you find yourself beating about the bush trying to keep the atmosphere cordial – I mean at the end of the day you have to work with these

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people – but then you find you haven’t said what you wanted to say, what you should have said. It used to get quite awkward at times.

I’ve got much better at this over the years. When we first started, my advocacy skills would have been zero out of ten, these days I reckon I’m a 12. I’m not afraid to get up and say what I think. At the end of the day we’re the ones who know Alex best. We know what he likes, we have his best interests at heart and all that makes us his best advocates.

Our focus with Alex is on life, on the best possible life for him.

The effect of a disability or some other health issue in people’s lives, on their opportunities in life, is massive – is everything. And if we have to sometimes go in there and say what we think and if that gets people upset, well, they’ll just have to get over it. Those little hiccups pale into insignificance if you look at the larger picture. It’s not something we do for the sake of having a moan, it’s about making sure that the right thing is being done by your child. I don’t know of much that’s any more important than that.

Having said all that I wouldn’t want to create the impression that Alex is the beginning and end of our family. We’ve never put Alex on some sort of pedestal, never made him the sole person of importance in our family. I’ve seen some situations where a disabled child becomes everybody’s reason for being. That’s not healthy for anyone. Not for the family and not for the child either. We’ve always tried to remember, all the way through, that everybody in our family is important and that includes Greg and me too.

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Greg – Talking and sharing, I guess it comes down to individual situations but I believe it’s made our relationship a much stronger one. Perhaps there were times in the early days when we both worried that our situation could put our relationship in jeopardy. Obviously having a child who is disabled in the family is not in itself going to instigate the sort of problems that lead to tension in a marriage.

On the other hand we were not unaware of the stress factor in these situations contributing to a high number of relationships falling apart. I have seen first hand the difficulty of raising such a child on your own and that is something I wouldn’t wish on anybody.

Not something I’d really want to contemplate.

Consequently we’ve worked pretty hard at making sure it was a team effort. It’s the sort of togetherness that’s also helped us keep proactive in what can at times be a pretty stressful situation. To keep on pushing the boundaries when things have been uncomfortable.

When we were younger, when this was all new to us, there were definitely times with the nudges, the comments, the staring and so on that made you just want to get out of there. To run away, or maybe to confront people. These days there’s no anger there, probably more a feeling of sadness that there’s still a large number of adults, and kids as well, that don’t know enough. I mean it’s no good being angry with a child, in reality it’s perhaps more an opportunity for a parent to say, “This boy has a disability, and that’s why he’s in a chair.” There’s the opportunity to make a child aware that this is a boy with a particular problem, but a boy all the same, not a freak. What I feel sad about is that too often this opportunity is brushed aside with a comment

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like, “Don’t stare,” and there’s no learning in that. No learning at all, other than don’t stare at someone in a wheelchair.

Sally – The next transition Alex will have to make, moving from school into the larger community is a big one. Because I’m involved with the local advisory committee looking to set up systems for disabled youth going through this process I know something of the problems we’ll face. However, the last thing I want is for Alex to be sitting at home all day watching television. I want him out there, doing something he enjoys amongst people he wants to be with.

I’ve always felt there is a difference between living in the community and actually being part of a community. I don’t want to see a situation where yes, he’s out there living in his own place but not seeing anyone from day to day except his carers. Relationships with other human beings is what it’s all about isn’t it and the main thing is to be in a position where you are meeting others, someone that you may hit it off with. I can’t think of anything better than having friends.

I suppose I look at James now and he’s great, out every second night, doing things, making friends. He’s hardly here at all sometimes and I think, well, you know, Alex has missed out on all that. I mean probably if you had to rank things, relationships would be the most important thing in life wouldn’t they. And for someone with a disability that can be quite difficult, particularly for someone who is non-verbal. I suppose I’d like to develop opportunities for such people to meet. I know once people spend any time with Alex, have the chance to get to know him, they tend to like him a lot.

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He can be real fun. So yeah, developing the widest circle of friends and creating these opportunities for those that need them, that’s what it’s all about isn’t it.

Actually, Alex has been on a date. He likes one of the girls in his class a lot and we arranged for them to go out together. Johnny, a young chap that takes Alex out sometimes, went with them – well, you wouldn’t want your mother or father going with you on a date would you. It worked so well we are organising it again so they can go off to the movies and stuff like that.

It’s interesting to talk to people I know, adults who have a disability and who are pretty much out there. It seems the one thing many of them miss is a long-term relationship. Having someone special in their lives. And I think if we were a little better educated about

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disability, all a little more comfortable with it – not so scared by it perhaps – then many of these things that don’t happen, would.

It’s one of the reasons I go so often to talk to groups about my own experience of disability. “Please feel free to ask me the things you’ve always wanted to know but were afraid to ask,” that’s one of the first things I say. Because, you know, for a lot of people who come across someone with a disability it’s a completely strange experience for them. They don’t know what to say or how to act. They may make certain assumptions; they may just stare and not know what to think.

Very rarely will they come up and ask, and that’s why kids are so fantastic, they don’t seem to have the inhibitions that the rest of us have. It’s amazing the things that come out and I always think the world’s just that tiny bit better for it.

Cerebral Palsy; it’s a weird term really, I used to feel it was a name they gave to something when they didn’t know what else to call it.

Effectively it can mean a large number of things. You can meet people diagnosed with Cerebral Palsy who were totally unaware that they had a disability. At the other end of the scale there are adults who are unable to sit and have to be fed through a tube. Alex has very high needs, it’s affected his ability to move, it’s affected his speech, it’s affected his cognitive ability, still, there are people out there with needs greater than his.

Usually it’s caused by a lack of oxygen around the time of birth.

It can be before birth or after birth and it can also be as the result of an accident at some later date. Actually that’s something I can get pretty hot under the collar about. One child is born with it, another child

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acquires it through an accident a short time after birth. The difference between the amount of support one child gets from the other is huge and to me that sucks. In fact it’s mind bogglingly unfair. I’d like to go a few rounds in a padded cell with the people that made that decision. To base such a thing on how, rather than need, seems to me little short of criminal. In fact a criminal who has an accident while committing a crime could find themselves with more entitlements than those disabled through no fault of their own. Think about it, we actually discriminate against people on the grounds of how they become disabled. How crazy is that.

Greg and I have been lucky I guess, in that it’s always been a partnership between us. We’ve always shared whatever there is to be done and that has made a difference. The cooking, the feeding, the bathing, all of those things were very much shared between us.

Another big thing facing families like ours is the likely financial strain and again we were lucky because of the big deposit we’d saved for our home while working in Australia. Greg did have to be the sole breadwinner for the first ten or so years but even so we didn’t have the type of financial stress that can result in those corrosive sorts of arguments. Not that I’m holding myself up as any sort of expert on this stuff. Everyone is so different aren’t they. You see this sort of resilience in some families that’s pretty damn amazing and for others it’s just that much more difficult. One thing I do know is how hard it can be and I certainly wouldn’t want to be making any judgments on others.

What I can tell you is that, as a mum, you can get pretty disgruntled home all day long by yourself and looking after a child that requires

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constant attention. Crying kids, getting the tea ready and doing all the other things you have to do all day without a break, that can get to you pretty quickly. You wouldn’t believe how much I used to look forward to Greg coming home at night. Having that help with the kids, the shared responsibility, that was great, but also how good it was to have some adult company. And if you don’t have the sort of relationship… if you don’t know each other well enough to see when someone’s under real stress, then I think you’re going to have trouble holding it all together.

Maybe there’s another part to that too. Realising that although we have a real closeness, we don’t have to be living in each other’s pockets the whole time. We can actually have our life together and something of our own as well. I think that’s important. I know some people feel threatened by that idea, or feel threatened by their partner wanting their own space but when life is so full on, every minute of the day filled up, having your own time out can be a really good thing.

Greg – When I’m at home I probably spend more time with Alex than anybody else, even if it’s only lying on the floor looking at the ceiling kinda thing. I’m very close to him. I feel like I understand him as well as anybody does. I imagine Sally feels the same way. If we’re in the sitting room say, I always prefer to sit right next to him. It feels good to be physically close to him like that, to have that sort of contact with him. It probably looks like two old men – us sitting there watching TV together. I might just make some comment to him or whatever and there’s the two of us nodding away.

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It’s a very great bond that I have with Alex. All of that time trying to help him speak when he was younger, trying to encourage him to shape some sort of words from the sounds he was able to make. Given a magic wish I think that’s how I’d use it, to give him the power of speech. In reality though, whether it’s speech or some sort of physical activity, we’re always pushing him slightly, trying to encourage him to move forward. It’s not been a one-way street either. I’ve learnt a lot from all this myself. When you’re faced with what can seem like a catastrophic situation in the beginning, you find it can teach you a lot about coping with life and what it throws at us. I mean not being smug about it or anything, but Sally and I can sometimes share a glance – maybe a little smile even – watching the way people sometimes react to the occasional small problem with their child.

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Sally – No one feels about your child in the same way that you do.

And I think if you talk to most families with disabled kids that would be their biggest fear. The fear of when you are no longer here to do for them. We’ve loved and learnt about all our boys – you’d have to wouldn’t you, living with them every day for 18 years – but imagine if Greg and I got bowled over by a bus some day; the rest of the boys would be capable of deciding what they want, they’ll have their own dreams and lives to live, Alex is different. Imagine some person, some agency – no matter how well meaning – coming in for a few hours and doing some sort of assessment of him, talking to this person or that and then deciding on what would happen to him. Making a decision about his future… it’s a horrible thought that crosses my mind on odd occasions. One I’m glad doesn’t come too often.

Even the dilemma of just one of us not being here, and the other having to take full responsibility, that would be huge. When that sort of thought comes into my head – God – I can’t really think about it.

It would be just so awful. And yes I know there are people, lots of them, who are doing just that, coping totally on their own. I hold them way, way up there. I do. They’re champions. Bugger the Olympics, that’s where they should be giving out the real gold medals.

Greg – It would be silly to say that we’re unaware of the rather large box of questions to which we must apply ourselves in the future. I think it’s pretty clear that any plans we formulate for the future – for ourselves – are likely to have Alex as part of that equation. Obviously he will always need people around him, but to what extent, that’s probably one

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of those areas that are a little bit sketchy, a little bit hazy at this point in time. Alex is fast approaching the age when he will no longer go to school, which means a transition of some sort will take place. What that will be exactly is something we are still exploring. What I would hope for is that he might experience a life where we, Sally and I, are not the sole possibility. And his particular level of disability gives us hope at least for the potential of such a scenario. On the other hand, 18 years of experience has taught us not to put all our hopes and dreams into the one basket. There has to be options.

I suppose what we’re struggling with is the desire for him to have a really good support base, not constant care exactly, but a good safe environment with other people around him who are not necessarily us. To get to the point where he can live life without being totally dependent on others and I believe he may be able to learn enough skills to have that. Anyway, those are the thoughts that I have when thinking about this. The possibility that he might do something constructive – have some sort of work maybe – that would be fantastic but I guess the two big things for the future would be slightly more independence within a safe community and a satisfying social life. Possibly even a relationship of some sort. Those are things we would want for him.

And if I could sacrifice something to make things even slightly better for him, I would. I will.

Sally – I suspect the future has always been a scary place for us and right now it seems to be looming up rather fast. Alex will probably stay at school until he’s 21. What happens then is something we’ve been

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thinking about a lot. I can remember a time ten years or so ago when Greg and I were taking about our future and Greg saying we’d have to remember that Alex would always be with us. And it sort of shocked me. I suddenly thought, you know, he might never leave home, and you have this realisation that you are going to be responsible forever.

Greg was totally comfortable with it but it was still somehow a sort of shock to me. It wasn’t what I had in my mind. Perhaps I was so full of the day-to-day stuff that it took some time – some years – before I realised all of the possible implications; before it sort of settled in me.

The fact that Alex will be leaving school in a couple of years has started to focus the mind on all sorts of things. Obviously we’d want him to be doing something he enjoys with people he likes but that will take a bit of finding. And as far as living arrangements go, once the boys leave home we’re not always going to be able to provide the sort of social life that Alex needs. Living on with a couple of old farts is not the ideal situation at all. There are plenty of horror stories to be told of disabled people in their forties or older who have never lived anywhere else, and when mum or dad gets sick and dies – when the parents are no longer there – their whole world crashes down around them. Just imagine how they must feel.

I guess what we’re hoping is that Alex will be living out there in the community with support. Some sort of flatting arrangement, maybe with other disabled people in a situation that makes it possible.

Obviously odds are that Greg and I are not going to get one of those telegrams from the Queen, which means that all things being equal, Alex will be still be living his life after we’re gone. Before that happens

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we want to find a way for him to have what everyone else wants, some sort of work – something to do with his life – and to be with people he enjoys being with. In other words, to have some choice.

So, that’s where we are now I guess. That’s our lot. And do you know, I don’t think that I’d really change that much. I mean if there was suddenly a cure for cerebral palsy, for Alex, I’d go for it of course, but I’d hope it wouldn’t change the person. Change him. Because that smile… that smile he has… yeah, that smile makes the world a better place.

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The Man With No Arms & Other Stories

Anastasia Del’Monte

As the showman said, a funny thing happened in bed this morning.

The bed moved. Now, all right, I felt an earthquake but every now and then I can be sitting here and something’s pushing my chair. Shadrach, my son, says “That’s dad.” And it probably is. So he’s around. I know he’s around. I’m very aware of that. I mean if he walked in now he’d take over the room. He was always a man that filled a room.

That was all right with me. He taught me a lot. I like to think I taught him a thing or two as well. So yes, were you to ask me about that, about the people I’ve met, about all the things I have seen and done, I would say it has been a real adventure. A grand voyage and no regrets.

“Have a go!” It came from somewhere behind me. When I turned to look he was short and dark with a small moustache and sort of Jewish.

I mean, I knew he was Jewish because he looked it. “No thanks,” I said, “it’s a have.” “Don’t be silly love, come on, ‘ave a little go. Anything could happen.”

The stall was circular and covered with any number of things, all those toys of one sort or another, and there was a notice – a sign – with numbers on it. They were all five numbers, 5, 15, 25, 35 and so on. At least, that’s how I remember it now. And there was a basket, a little basket of cut drinking straws about two inches long and inside each straw was a rolled up ticket with a number on it. Five for two and sixpence I think was the price. If you picked a straw with a number that corresponded to a prize then it was yours. If you got the number 100 you could pick anything at all from the stall. Not much of a game really, was it. Dreams more like it. Alas for one’s dreams.

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At the age of 32 I had my life mapped out. For a start I never imagined I would marry. Probably – consciously or unconsciously – that was my disability. Oh, I’d had a few affairs, both in England and America, but at that stage, as I say, I had my life all planned out. I was going to buy one of the latest typewriters – this was before computers were as small as they later became. I had my eye on an IBM Executive and I was going to advertise at the university in Oxford to type papers for people. I was already typing papers for my brother-in-law and didn’t think I’d lack for work.

At this stage I’d left London and had been working three days a week for the Churchill Hospital in Oxford. But my plan was to find a caravan to live in and start a typing business. That was the plan.

I had a tricycle, a three-wheeled bike that some days I would take into Oxford from Abingdon. Occasionally I would leave it in the bus car park overnight and pick it up, untouched, the next day. Tells you something of the times I suppose. Anyway, it must have been the weekend and I’d taken the tricycle up to my sister’s for tea, after which she put the kids in the car and took them off down to the local fair.

For some reason I decided to follow them down on the bike, don’t ask me why. We went to a lot of fairs around the Cotswolds when we were children, but I never really enjoyed them.

My sister took the kids on various rides and so on and I sort of wandered around idly looking at things. I was still upright in those days – at least I was with the aid of a walking stick – anyway, that’s when I heard this voice, “Come on now my love, come and ‘ave a go.”

I wasn’t interested in having a go, but somehow we got to talking.

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Something started a conversation and we seemed to go on and on about all sorts of things. He told me he came from Whitechapel in the East End – a complete Cockney. He told me his father was a bookmaker and I told him a little of my own father. He asked me about the things I liked to do and about where I worked. We just talked and talked and when my sister came by after an hour or so, to say she was taking the children home, I said I’d come along later.

I never did buy a straw but I watched him when he had a customer.

He was very good at it, selling; he certainly got a lot of money in.

A bit later on he said he was going to have a break and would I like a cup of tea. And so off I went with him, still talking all the time.

He told me something about his exploits during the founding of the state of Israel, how at 18 he’d worked with Menachem Begin and so on.

As it happened that was something I knew quite a bit about, my father having been involved from the other side. I thought he was interesting.

The fair was going to be there for a week and before going back to work he asked if I’d like to have a meal with him on the Wednesday.

I found myself saying “Yes, all right,” while at the same time not intending to do anything of the sort.

I went to work the next day and my thought was I wouldn’t think about him at all, I certainly had no intention of going off for a Chinese meal with him. And then he telephoned, he rang me at work, “How about that meal,” he said, bright as a button. Well, my resolve went straight out the window. I thought, you know, he’s actually taken the trouble to remember where I work. He’s taken the trouble to find the phone number; maybe it would be a good thing to have this meal.

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I thought he deserved a chance. We went to the tiniest restaurant in Abingdon and it all progressed from there. He had a sense of humour, he had ideas about things that I liked. He was open-minded and could see past my disability. He was – not straight, that would be the wrong word – honest, yes, in many ways he was a very honest man. All of that, I suppose, is why we gravitated towards each other. And later, despite the fact that he was on the edge of the criminal world, that he knew the Kray twins, that at the time he still called himself the best second story man in London, I accepted it all.

This, however, was our first meal together, our first date if you like, and he said to me that night, “Look, we pack up on the weekend, I’m off to London. How about coming with me? You’ll like the folk club.”

He ran this folk club – it was quite well known then – called the Troubadour. I knew nothing about folk music but from what he said it sounded like fun. Here was something interesting that could happen now. When I looked at the alternative, a dead-end job working three days a week in hospital administration, it didn’t take me long to decide.

“Yes,” I said. “Yes, I think I’d like that.” I felt like I was in the right place at the right time.

On the Friday I phoned the hospital and told them not to expect me the following week. I had my sights set on London and didn’t look back. We set up together in a bed-sit on the Gloucester Road and I learnt to cook. He took a night job driving mini-cabs and that was it. Three times he asked me to marry him and each time I said no.

Then I took a look at myself. I thought, you know, this is just silly. He’s intelligent, he’s interesting, he’s exciting, let’s do it. That was in June,

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we had the wedding in October. The 8th of October, 1966, I became Mrs Simon Del’Monte. Of course no one called him Simon, it was always Curly, because of his hair.

My life has indeed been the sum of two parts. What is it they say today, a game of two halves. The place I came from and the place I went. I was born in Southsea, where exactly I have to think. Portsmouth Dockyard in Southsea I believe. My Uncle Jack – my father’s younger brother – was Commander-in-Chief at the Portsmouth Dockyard when I was born there in 1934.

My father, who had trained at the Sandhurst Military College, served for a time in India, which is where he met my mother. She was the daughter of the Lieutenant-Governor of Bengal. Before that he’d served in Gallipoli and then France. I’m not sure when they where married but it must have been around the end of the First World War. I had a brother who was much older than I. By the time I was born my father was in charge of a British military garrison in Ireland. They were actually stationed on Spike Island, in Cork Harbour. His brief was to hand over to the Irish which he did after my younger sister was born in ‘36. He actually loved the Irish people. In fact he said that if he were ever made to fight in Ireland he would resign his commission. My mother wasn’t so keen on them, she’d had the experience of Irish Catholic priests you see, but that’s a different story. From there my father went to work in British Intelligence and I think it wasn’t until about 1939 that I remember him again.

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We had moved back to a little place called Mill Cottage in the Cotswolds and he would breeze in and out at intervals. It was a very small cottage with black beams and I can still hear him – who was at least six foot tall – complaining about ‘living in a bloody submarine.’

My sister and I acquired a governess around that time as well. A lovely young part-Corsican lady. Now that would have been around the time of Chamberlain’s declaration, peace in our time, or something equally foolish. Not long after that we received a letter from a second cousin of my mother’s in Dunedin who were Ramseys, their antecedents had started a shipping company there. They said to my mother, you know, there’s obviously going to be a war, why don’t you bring the girls over here, to New Zealand.

My father was doing something completely sub judice in the Middle East at the time and my mother couldn’t get hold of him. So, she went to see Uncle Jack. “What do you think Jack,” she asked him, “is it wise at this time to ship the girls out to New Zealand?” And Uncle Jack, who was then at the Admiralty, said, “Well, I’ve looked at the operations that are going on and it seems quite safe.” So, that was that. Off we went. Embarked from Liverpool, my mother, my sister, Miss Mac our governess and me, all terribly exciting and in due course, via the Panama Canal, we arrived in Wellington. I suppose we then got the overnight ferry and eventually we ended up in Dunedin. Dunedin and Queenstown, yes, we shifted between the two. Queenstown in the summer I imagine. And as children we had such a great time; the pictures, Australian newsreels with those Kookaburras in the front, wonderful books from the Dunedin Public Library, penny chocolate

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bars, penny ice creams, the lot. Oh we had coupons of course, rationing and so on, but not as you’d notice, not like England. For my sister and I – at our age – it was a dream country.

The world may have been at war but we ran around all over the place having a very good time indeed. Of course, being afflicted with cerebral palsy I didn’t run quite as fast as my sister. I suppose I’ve always been aware of my disability but apart from the physiotherapy at Dunedin Hospital – where I also learnt to swim by the way ­– there was no sort of fuss at all. I didn’t walk until I was three and so of course my mother had told me what was wrong. She was very sensible about it. Obviously she’d taken me to the Harley Street specialists and so on, I remember I had to wear – not calipers as a lot do, but boots – special boots. And that was all marvelously exciting because you had to go along to Daniel Neil’s shoe store in London where you stood on a platform and put your foot under this scope thing and it showed the shape of your foot and the size of boot you needed. Basically though we just got on with it. Just common sense, and that is how my mother dealt with it.

I walked with the typical spastic swaying gait. My arm, my left side, was affected, but only slightly. I got pushed around in an old pushchair a lot by my sister Margaret, up and down those Dunedin hills; she was very good. I learnt to ride a bike in Queenstown. Mother bought a little two-wheeler and we learnt to ride round and round the pond in Queenstown Gardens. The pond is no longer there, they’ve filled it in. Of course the bike had to be held for me to get on and as I was also incapable of getting off, I just fell off, preferably against a bank or something. In between, however, I could ride it and that was great

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fun. There were certain concessions made when we played hopscotch as well, so yes, I was aware I was different, that I was disabled. My mother massaged my legs with oil as a regular thing most nights. I did exercises as instructed by the hospital. Apart from that, as I said, it was something I grew up with, no one made a fuss and I got on with it.

So you see, for me, and I think for my sister also, Dunedin was a wonderful time. No doubt it was a more difficult time for Mother who listened avidly to the radio, hungry for all the news she could find.

I remember hearing the Americans were coming into the war; I remember the bombing of Darwin and the fear of the Japanese. I remember, early on, watching my mother cry the day the Germans marched into Paris. “That’s terrible,” she kept saying, “the Germans are in Paris.”

She had been educated at the Sorbonne you see and knew Paris more intimately than most in this part of the world.

Come 1945 and mother could stand it no longer. I think she grew tired of the women’s circles, knitting balaclavas for the troops, and all those cream teas. To her it was just so provincial. Again she consulted with Uncle Jack who said yes, it would be quite safe to come home at that point and so she was immediately on the phone, P&O I suppose it was. “Have you a ship back to England anytime soon.” Well, yes, they had one going in a couple of weeks and so that was it. Packing, travelling to Christchurch, the overnight ferry to Wellington, the train to Auckland, all of it a blur. The one thing to stand out was the refreshment stop on the main trunk line at Taumaranui. Five minutes for the entire train to rush the counter and carry back these great thick heavy china cups slopping with weak tea.

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From the Port of Auckland we embarked on the Ruahine. Now that must have been – let me see – February. Yes, because we arrived in New York on Easter Sunday. It had been a good trip although at our first lifeboat drill the officer in charge of our boat came to the exercise so drunk he fell over. That was it with my mother, she wanted to get home, but it didn’t worry us. There were a lot of children on board and we played and had a grand time.

We stayed in New York at least long enough to see the Easter parade and go to Mass at St. Patrick’s. We also went to the zoo so we must have been there a few days waiting to pick up a convoy for the Atlantic crossing.

The final crossing was unexceptional until a day or two from England. We were somewhere off the Portuguese coast and all of us on deck watching this pretty little fishing boat with a purple sail weaving in and out of the convoy of ships that seemed to stretch on across the ocean forever. Then, without a warning of any sort, the ship next to us erupted in a giant sheet of flame. It was an oil tanker, and as it began to sink, through the fire and smoke and confusion we started to hear other explosions through the convoy. It was later surmised that a U-boat had got in under the fishing boat with or without their knowledge. As we watched open mouthed I heard my mother say, “What have I done?

What am I going to say to your father?” Well, we survived, but later, as we arrived in Tilbury, I remember my mother saying she would be having a few words with poor old Uncle Jack.

Back in England it was off to boarding school for us. The food situation then in ‘45 was worse than ever. I don’t know if it was

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something to do with Berlin or what – the fact that we were helping them to survive, having just bombed them to smithereens says something of the madness of war doesn’t it. And the winters at that time; was it ‘46 or ‘47, anyway it was incredibly cold with icicles on the trees and that sort of thing. Then of course the Labour government got in and there was great devastation in my family circles over that.

I remember father, who had breezed back from the Middle East at that time, was very sardonic. I can still hear him sounding off at great length about Cripps who was the Chancellor of the Exchequer at the time.

I was sent to St Mary’s, a convent in Shaftesbury, Dorset. My first day there we all had to get into a line in this enormous assembly hall and that is when I first became aware of being frightened by big spaces.

I always had a feeling that I was going to fall down. And one day I did.

After that the headmistress allowed me to sit during assembly. They had these little alcove seats around the hall and that is where I sat along with another girl who had a withered leg from the polio of that time.

That was the only concession they made to me at school, otherwise I was on the games committee and had to trudge out to the football field and watch all the games against other schools, all of that. Again, I just grew to accept things as normal.

During that period we were invited to spend some time in Cairo where my father was working for the British Embassy, which in his case meant MI6. It was all so very exciting and when school friends said things like, “What about school?” I would say grandly – copying my mother – “Oh school doesn’t matter, travel is much more important to an education.”

Which in fact turned out to be right, it was a grand experience.

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Mother left early. My father would have found a place for us and staff and so on. We were to come on later with cousin Michael, who was a lovely man. We trained to Bournemouth and at Poole Habour we were put into a little boat and taken out to a seaplane. We stopped at Marseilles for a meal and then flew on to Sicily and spent the night.

At breakfast the next morning I was served an orange with a leaf still attached, plucked directly from the tree. Seems silly now, but coming from England in those days it was special. Finally we arrived in Egypt, landing like magic at night on the Nile. All so terribly exciting to be met by our father and mother and Shasly, the chauffeur.

We went about, we saw the usual sights, the pyramids and the sphinx and then there were some of the more unusual things. What do I remember? Groppies was a treat. They made hot chocolate so rich you had to have a glass of water to go along with it. There was the French-trained cook my mother had for all these diplomatic dinners; he made such beautiful meals crouched down in front of a little fourburner stove. All with no butter because of the cholera epidemic.

Yes, butter was considered dangerous at that time; we used to spread cream on our bread instead.

I’m a bit dodgy on the dates but I think my father retired after our visit to Cairo. Probably not before time; everywhere he went in those days he was accompanied by four Coptic policeman. It seems my father was on the Israeli Stern gang’s hit list at the time so they came everywhere with us. To the opera, the ballet, they even came to Mass and while my father went to confession they walked up and down the aisle outside. He’d been around in the East for a long time by then

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and seemed to know just about everyone. Saudi royals, Iraqi royals, Laurence – whom he didn’t seem to have a great opinion of – there’s even a story of him doing a pilgrimage to Mecca dressed as an Arab.

When I look back on it now I feel like we touched a little piece of history, but a history perhaps that is now all but forgotten.

By 1950 I had my School Certificate and my parents then decided that I should become a little better acquainted with the French language. So, to further my education I was sent off to yet another convent school on the French Belgium border, near Lille. All the girls in my class were very kind. They used to go home on the weekends and each week one or other of them would take me home as well.

Again I was aware that I was disabled but also that they just accepted it. I don’t know, perhaps it didn’t worry me because I could keep up.

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Anyway, nobody mentioned it and I didn’t dwell on it. I’m not sure how much French I learnt at that time but I know my classmates learnt a lot of English.

It must have been after I came back from school there that we moved again. We always seemed to be moving. My mother would pack up all the furniture, her big Breton chests, her linen and all the curtains and so on, her silver, and off we’d go. Of course my father had never really been there from the time he left Ireland and went off to the Middle East to do secret things and he was, I think, a bit hopeless with money. Anyway he retired around that time and came home. I’m trying to remember exactly when all these things happened but it gets a bit confusing.

He was knighted about that time, not that my mother was too excited.

“Oh I don’t want to be Lady Clayton,” she said, “the butcher’s bill will go up.” She was the opposite of my father; she’d become a very good manager. She’d had to be.

The move took us to Dorset for a year where I had an aunt and uncle living, and it was after that we bought the house in Herefordshire.

The old Vicarage, which was built around 1360, something like that.

At any rate, it was a lovely old house. My father died there in 1955.

It doesn’t seem that long does it, counting the years he was back with us, but it was good to have him there. We used to go to Mass every morning which then was still in Latin and very lovely. We did a lot of things together, cultural things like the ballet or the opera.

I don’t suppose I got to know him frightfully well; even then he spent a lot of time by himself. He was not a particularly well man by then, he had all sorts of breathing problems, so much so that at home he

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lived downstairs. He said he didn’t want to have to climb the stairs all the time. My mother had a room upstairs with an ensuite of her own.

He came back to us at the end of his life but I don’t know that they co-habited much. Perhaps I do have certain memories of footsteps in the hall but yes, they slept separately. I once asked her about it and she said she was a light sleeper, had always been a light sleeper and told me a story about their honeymoon. It must have been just after the First World War. They were in this hotel and someone had actually come and knocked on their door and asked them to be quiet, said that they’d been woken by the noise, and this was my father you see. She said he would begin to mumble in his sleep. First a sort of mumble then it would become conversational and then a shout until finally he would be yelling. I don’t know what he was going through. It could have been Gallipoli, it could have been France, it could have been anything.

But she said they had often not slept in the same bed because of her being a light sleeper.

Perhaps it was the reason he spent so much time in the Middle East. It may have been the reason for him taking up with someone else and wanting a divorce, which my mother declined. Perhaps they were simply opposites. My mother loved her gardens, she was a gardener.

My father’s idea of gardens was, ‘concrete preferably.’ I don’t suppose I knew him that well at all. Apart from those last few years I knew only some of the things he’d done and most of that is what my mother has told me. Strange to think of it now but most of what I know of their lives must all have been put together from bits and pieces of conversations I had with her over the years. When I hear myself saying

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“Patience is a virtue,” I hear my mother. Much of what I know now I learnt from my mother. Where did she get it from? My grandmother, the Lady Duke, perhaps. Patience is a virtue, something I’m forced to contemplate quite a lot these days.

Acceptance, something else I got from my mother perhaps.

My sister was different. I wonder if she is a little bit doubtful still of the things that I do. And of course, later on, when I wasn’t a Catholic any more – that I’d chosen another way to go – became a minor bone of contention between us. Well, I’ve always liked the excitement of different lifestyles, and as I’ve already said, from the time I met Curly my life changed completely. The future I had planned, sitting in a caravan with a typewriter, completely disappeared. Meeting Curly, my marriage to Curly, was the most educational, the most mind-expanding thing in my life. And my family weren’t dull. We read a lot, we talked a lot, we discussed politics, we talked of the things that were going on in the wider world and when my father came home that added to it. He was able to give a context to events beyond what one read in the papers. Up until Curly it had been a varied and interesting life, but now, suddenly, as well as being interesting it was exciting. And I suppose I had imagined – because of my disability –­that that sort of life could never be mine. He showed me that he cared and he showed me that my life could be different than I had ever imagined.

As you might envisage however, even though this was the mid 1960’s, not everyone in England was young and swinging. My mother very much cast a glance askance, she asked questions about him – I think she probably guessed he was a bit of a… well, that being a

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London Cockney he had a bit of a past. And then, being my mother, she got on with him. I, on the other hand, immediately accepted him for who he was, as he did with me. We knew we were different, that we came from different backgrounds, but what did it matter to us.

What mattered was that I got on with him, and he with me. From my experiences in the past I knew that romance was probably going to be difficult. I knew that men noticed my disability and to be truthful I was convinced that romance would not happen for me. And yet, here, suddenly, it had. And it was fun! I was meeting people and doing things I had never imagined possible before.

Because of the Troubadour Club that Curly was involved in I began to learn a lot about folk music, of which, until then, I knew very little. It was a tremendous life meeting all sorts of wonderful people. We were living then in a bed-sit in the Gloucester Road and Curly would say, “Shall we go to Liverpool tonight,” and off we’d go to see the Liverpool Spinners at their club. He knew people all over the place. One night we had a return visit from Cliff Hall, one of the Spinners who was West Indian. He rang Curly because he couldn’t find a place to stay. There was still a lot of racism about then and people would say they were ‘full.’ Anyway, Curly who was working nights on the mini-cabs said come on over and I ended up sharing the bed with Cliff that night. We had a good talk, said good night and that was that but you know, here I was living among these friendly and accepting people. People I grew to love being with, and who accepted me for who I was also. My life had changed radically in a short space of time. The world seemed wonderfully exciting

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and totally un-constructed. Nothing was ordered and we lived more or less by the seat of our pants.

Having believed all my life that I would never marry, it was a strange feeling to wake up one morning and know that by evening I would be.

One minute I am on my own and then suddenly he is there. And ahead of me lay a life so different than any I could have imagined possible.

My mother and sister arranged the wedding for us in Abingdon.

And my little cousin Michael, the one who accompanied us to Cairo, has become a priest and will marry us. I say little Michael because fully grown he is only five foot two. Curly, of course, had never been baptised and so is considered a non-Christian by the Irish priest who runs the parish. He was very definitive, his last word on the subject being, “I’ll have nothing at all to do with it!� Michael, on the over hand, who has

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become a very talented man with influential friends in the Vatican, intervenes on our behalf and the wedding goes off without a hitch.

It was my brother who gave me away, my father was not there at the time but if he had been, I don’t think he would have been horrified. I don’t think he would have said no. I remember when Curly first told me about working with Jewish refugees – I can still see those newsreel pictures of the time in my head now; that ship held up in Marseilles full of people who had escaped the camps. Curly had gone to work with these people, the survivors, and accompany them to Israel. He was amongst those who worked to help begin the new state. My father, of course, was on the other side. They would then have been enemies. But do you know I couldn’t help thinking on the day, that far from being horrified, my father would have been bemused. He liked that sort of thing you see, coincidence. I can see him smiling over that one.

And Curly – when did I actually begin to love this person… that’s an interesting one. I’m not sure if at first it was love. It was certainly comfortable. It may have been gratitude that he took the trouble to notice in the first place. Perhaps I was grateful for that. The fact is he was someone I could get on with. For a man that never read he could talk about anything; God could he talk. And something else too, with the talk there was always humour. I don’t know, I suppose it started off comfortable, then came affection and finally love. The sort of caring that comes with love.

Michael, having presided over our marriage then kindly gave us a cheque for a thousand pounds. “No use waiting till I die, you might as well have it now,” he said. We spent it on a honeymoon to Israel and

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while there I met Zippy. Ziporah, who was Curly’s lovely daughter from another time. The child of a political marriage to a Yemeni Jew when he was very young and very wild. When I think of our honeymoon I think of Zippy and I think of a night playing cards on the edge of the Sea of Galilee as the sun set. The people, the light and the sea, it was a marvellous time.

When we came back Harold Wilson was Prime Minister and there was talk of a European Union. Curly went back to the mini-cabs but we both had the feeling we wanted a change. I said, “Canada.” And he said, “No, too cold.” I said, “What about Australia?” He said he didn’t like Australia. I found out later that he’d only been in Australia for half a day while in the merchant navy. So, his joke on the ship coming out was that New Zealand had won by default.

The French ship we’d wanted to take, refused to take us. I was pregnant and had no doctor so they wouldn’t take me. In the end it had to be P&O, the old Rangitoto, they had no such qualms. We left from Tilbury and sauntered off across the Atlantic. The voyage was quite an event, we broke down 34 times. You’d be in the swimming pool and everything would go still, “Oh, the ship’s gone again.” At Tahiti the Chief Engineer was carried off with a nervous breakdown. We finally docked in Auckland on a Saturday morning in February, 1967. It was like nothing had changed from 1945, everything was closed.

We had come to New Zealand with the intention of starting a folk club and that is what we did. Curly immediately got in touch with Robbie, the mayor of Auckland, and then worked his way down.

Within a short time he knew absolutely anyone who was anyone in

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Auckland. Living with Curly was about people, every kind of person you could think of. He was the other side of taciturn.

We found a place above a garage maintenance shop in Khyber Pass.

424 Khyber Pass Road. A lovely old man owned the premises and he showed us the space above the garage and Curly said yes, this would be marvellous and immediately organised a couple of young builders to work on it. He wanted a flat at the back of this great area and the club was going to be in the front.

We had a grand opening. It went very well and the club became very popular. That first year was absolutely amazing. And here’s a funny thing, on the opening night we got to bed about four or five in the morning. Around six I started to get restless. I thought it was the salami sandwiches that I’d eaten on the desk. At half past six he said, “For goodness sake, stop moving around I’m trying to get some sleep.”

I said, “Curly, I’m having pains.” A few minutes later he said, “How far apart are they?” When I said every three minutes he was out of bed like a shot. We had a folk singer from England staying with us, we’d brought him over for the opening and the two of them sort of carried me down the stairs. I sat on the baby’s head all the way to the Mater Hospital. When we got there it was closed. Curly, of course, starts tearing about the place until he finally finds the emergency bell. This brings a little nun running and Curly, who is not that diplomatic when he’s worked up, starts on her, “My wife’s going to have a baby!”

They take me off and then come back to Curly and tell him it’s going to take a while because I’m not young. “Have you examined her,” he says. “Well, no, we’re not planning to yet.” That got him going.

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“Good God woman, she’s about to have it. Go and examine her!”

She came back a little while later and said, “You’d better wait, it’s only going to be a few minutes.” So, that was our first girl, the three of us living at the club. We had all these young nurses then who were members of the club – a five shilling membership it was – and they used to love babysitting her.

And so it went on, Pete Seager, Leonard Cohen, The Dubliners, Sonny Terry and Brownie McGhee, Nina and Frederick they all played at the club, plus of course all the great New Zealand acts, Hamilton County Bluegrass Band and so on.

Then in 1969 Curly got on the wrong side of some of the folk purists. They accused him of spoiling the purity of New Zealand folk music by paying the artists. There were other articles saying he was doing a tremendous job but Curly got annoyed. He knew Rhys Jones and all the television people and in the end he sold the club on Rhys’s show for a shilling. No, it would have been ten cents by then. Anyway he sold it to a guy from Hamilton called Frank.

When we moved on from the club… well, I suppose you could say Curly wheeled and dealed. He sold women’s clothing for a while.

He played a lot of bridge. He played some pool as well and made a bit of money at that. We had more children and we bought a house.

A lovely four bedroom place in Glen Eden with a stream running through the property. We got quite settled there for a time.

Curly got a job selling cheap insurance policies and he was doing very well out of it. He’d get through his quota for the day and then

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off he’d go playing pool. Then one of the bosses found out and got quite funny about it, went on about how he’d like to play chess every day as well but he couldn’t, so why should Curly play pool. Curly was not happy and we decided that perhaps he should vacate the position.

Our mortgage on the house was $250 a quarter and after that there were times we found it hard to make. A symptom of his wheeling and dealing I suppose. Well my idea then was to move into a caravan, which we did. Sold the house, bought a 22 foot caravan and moved out to Ramarama, nice little caravan camp out near the end of the Southern motorway. We had an awning with a floor at the side and the kids slept out there. My son Ishmael learnt to walk in his cot there, I can still see him moving around his cot and looking at me through the bedroom window.

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Sidy, however we left in Glen Eden. Yes, that’s where our little boy Sidney – we called him Sidy – died. He’d been sick and on medication from the local doctor – Curly had some work in Auckland at the time.

I phoned up the doctor that evening, before Curly got back. I said, “He doesn’t seem very well. He’s asleep but there’s stuff coming out his nose.” And the doctor said that if he was no better in the morning I should bring him to the surgery. When Curly came back that evening we gave him his medicine and he sat up and took it okay but in the morning he was dead. Our eldest girl found him in bed. “Come on Sidy, wake up, wake up!” When I heard that I knew. Myocarditis, an infection, that was the verdict from the coroner, and yes, it was… it was a very fraught time in our life. I wouldn’t wish that sort of experience on anyone. To have something like that happen gives your life a very different sort of perspective.

I don’t exactly know what Curly was doing there for a time but we never wanted for anything. We always had somewhere to live, a caravan, a bus, a state house. The kids had food on the table. That was always important to him, that there was food for all. There were a lot of second-hand clothes, friends would come with big bags and the girls would fall on them and fight about who was to have what.

We were in a caravan in ‘74 and Curly was working for Farm Products lifting these large butter boxes and that sort of thing.

Then one Friday he came home and he was sort of wriggling about.

I said “What’s the matter?” “I don’t know,” he said, “I’ve got a sort of pain in my back.” On the Sunday he’s sitting on the bed clutching his chest and so I sent him off to Auckland hospital. I don’t know

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how thoroughly they examined him but it got passed off as indigestion.

Monday morning there was a stop work meeting so he took himself off to see his own doctor. He had his examination and got dressed to go back to work. “No you don’t man,” says the doctor, “you’re off back to the hospital, you’ve had a heart attack.” He was told he wouldn’t last a year.

Six years later, Curly, who had been out for the evening came home very quiet and got into bed. “What is it?” I said, “Nothing,” he says, “It’s just I was down at the club tonight and Frank wants to get rid of it. Do we want it back?” “Yes,” I said, without hesitation.

I drew up plans for the flat so that it would take the six of us and we started back there at the beginning of the new year. That lasted what, another five years at least and it was the best of times. We finally finished up there around 1988. By then it’d been running 21 years. After that it was back into another caravan. Where did we have that one?

I can’t remember. We never stayed anywhere more than three years.

I remember the night we closed though, that was a bang-up night that one. So many memories.

Curly died in Australia. The last year of the century. We’d been there a year or so and it was good. Then he started to go downhill.

He was having trouble. Well he’d had a bypass in ‘96. They’d given him – what do you call it – angioplasty, they’d given him three goes and when he’d asked for a fourth they said sorry, we don’t do four. Anyway, he was given a bypass before we went to Australia and he did okay with that until his breathing went. He started to have problems with the breathing and perhaps I wasn’t as tolerant as I could have been.

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I sometimes look back and think on that. I’m fairly stoical about pain. I mean I’ve had five children and you get used to a bit of pain.

He was a little bit fussy about these things while I was probably a bit impatient. All the same, he was happy there.

The end began with a crash. I was woken at four in the morning

by Curly passing out and falling out of bed. He was so heavy there on the floor I just couldn’t move him. The ambulance finally arrived and got him off to the hospital. Of course the next morning there he was in bed, his usual cheery self. He’d had another heart attack and it went on like that for another three weeks or so. He really wasn’t very well.

He came home, he went back in. Then one night – it was just after nine, a quarter past nine – they rang me to say he’d collapsed. That he’d collapsed and they hadn’t been able to revive him. It wasn’t unexpected, but it was… final.

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There is one thing I think absolutely mandatory in a marriage and that is a sense of humour. If you can’t laugh together you are lost.

And one thing Curly always had was a sense of humour. The night he died a woman we knew in the Baha’i community rang and said, “Would you like John and I to come over,” and I said, “Yes please.” When they arrived she had a big smile on her face. I said, “Why are you smiling?”

And she said, “How typical of Curly to die on Black Friday.” I hadn’t even realised it was Friday the 13th. But you know, somehow that made the whole thing different. These people knew who he was and they loved him. Somehow it sort of smoothed over the shock I was feeling. I had a little smile myself. Friday the 13th was so typical of him and everyone that rang had a laugh about it. It had been a good life and I think Curly would have appreciated the joke more than anyone.

That he died was a terrible shock, it jolts you, but that helped me to think of him with a smile. It eased the pain.

Thirty-nine years now, come February, that’s how long I’ve lived in this country at the end of the earth. And it’s been good to us, a place where our kids could run around without shoes. The whole thing has been a great old journey. Not just my time here in New Zealand but all of it. I’ve had a very good life from the beginning. With my parents I wanted for nothing and with Curly, he took me on and made for me the best of lives. Always interesting, always full of people that I knew and liked. It would be hard to say I have not been satisfied with my life.

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My disability has not figured as much as some might think. Perhaps when I was younger things would come into my head. It would be nice to be an air-hostess, or something else young girls might think of as glamorous, and then I would think again and say well, I can’t. And yes, there’d be a frustration there. There were also the little milestones that one could do without; the day when standing in a bus queue I began to fear I might fall over, the day when two walking sticks were needed because one was no longer enough, the day when walking sticks had to be abandoned altogether and I needed a chair. There are small frustrations still, many of which don’t need to be there. The people who still insist on talking over your head, “Would your wife like a cup of tea?” “How should I know, why don’t you ask her,” Curly used to say. The struggle to get your chair over a step just to get into a shop.

The kids – and their parents – who stare too long. I could bore you to death with a list like this, but these are things that will not define my life. I simply will not let them.

I have a brain and I can use it. That I am stopped these days from doing all I might want to do is perhaps not just the wheelchair.

Nowadays I’m told it’s my age, you’re too old to do this, you’re too old to do that, you are no longer useful. That’s a sound I’ve heard before, a message I’m used to. Age, it seems, has become yet another disability.

Well, that’s as maybe, but there are still things I find myself wanting to have, wanting to do. So if nobody minds, I think I’ll just get along with life and continue as best I can, learning and thinking as I’ve always tried to do, outside the square.

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One last thing. Had I not been disabled, everything in my life may well have been entirely different. But my life has been what my life has been and were you to ask about regrets, do I have regrets, I would say no. None. Absolutely none.

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The Man With No Arms & Other Stories

Carol and Maurice Williams

Carole – I don’t remember the dreams I have. As soon as I wake up they disappear. The crush I had on his son first – how things started – that was like a dream. I came down to Christchurch for my goddaughter’s birthday and stayed at my friend’s place, just up the road there. That was okay. Then she wanted to introduce me to some friends and I said yeah, that would be nice which is when she brought me down here. Soon as I walked in the door I started having a crush on his son. That went on for a bit – for a little while – we did stuff together until I went back to Wellington.

At Christmas I came back down again and I was feeling quite good about it. I was looking forward to it but that’s when he decided to drop me. Just before Christmas Day, he dropped me. Well that really hurt… hurt me blimin terrible. That’s when my heart got broken.

I couldn’t stop crying for two or three hours after. That’s how I felt then – not now. Looking back on it he wasn’t right for me. When I think about it – in his mind – I was in a wheelchair, can’t go walkabout, can’t do nothing much at all. So, bye bye Carole.

I’d had a boyfriend before but that was back in school. That went on for quite a while but then it finished and this was the first time since then I’d had someone else. First of all it was so good, but then it went another way… went another way altogether. I didn’t want to talk to anybody for a while after that. Just wanted to shut myself in my room and never come out. Yeah, that was all bad – always going to be bad – until his father stepped in. After that I started to forget about it all, how I was unhappy, and now I’m totally over it. Totally. Thank God for that.

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Maurice – I was in my early twenties when I got married the first time.

Twenty-eight years later we’d had six kids so it was no flash in the pan sort of thing. It went on till something seemed to fall apart and the marriage just went flat. I did love her, don’t get me wrong on that.

I did care for her. You don’t stay together all that time without some sort of feelings, but somehow the feelings left us and it was like a sort of death. We were still friends but the marriage bit of it fell apart.

We’re still friends now. Been the best of friends since we divorced.

It probably seems strange to some people but I think we get on better than when we were married.

Carole is something altogether different. When I first saw her – first saw her come in the door – there were vibes, you know. The whole body starting to tingle, there was like a warmth and I’m thinking what the hell, you know, what’s going on. She seemed to be radiating like an electric heater on full bore. You could just feel that she was a real loving sort of person. It really turned me on my ears, really flipped me. And it was crazy because she was going out with my son at the time but that all changed later on. It all came to a halt after a while and Carole was pretty upset but she’s the best one to tell you all that. I was just glad to comfort her. Things between us developed very quickly then. It was like this real warmth came to us. I tell you what, I’d never felt so good as I did then. That was five years ago and things have just got better and better. I’m 63 now and I guess a lot of people my age feel that life is crap but I’ve got a different viewpoint entirely. I think my life now is better than ever. It wasn’t always like that.

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Carole –There was a time when I started to think about it all.

When I started to wonder about it. Why couldn’t I walk like them?

What’s happened to my hand, why can’t I move it properly? I must have been 14 or 15 before I can remember thinking like this. Looking at others and seeing all the things they could do, wondering why I couldn’t do them too. Yeah… when I remember back then I think about how lonely I felt inside.

Dropped on my head is how I got it – got cerebral palsy – and epilepsy too. It was just an accident when I was a baby, that’s how it happened. That’s what they told me but I can’t remember it or how old I was. I do remember I was the most loved one after that. Then I became a teenager and started feeling a little bit too loved. My mother was a bit too fearful for me. She got overprotective. Like mothers do.

We lived in Porirua and all my friends at school lived in other places so I could only see them during the day. At home I just watched television or listened to music. Bob Marley, or Queen… there was a lot of music I liked. I used to like singing along with them and somehow that seemed to relax me, calmed me down quite a lot. I don’t know what I was thinking exactly… probably nothing at all, just happy inside myself. That would last a while but the thing I liked most was to get outside. Sometimes I would go to get a haircut or shopping with my parents and that was good because my family is everywhere around Porirua. We’d always bump into them at the shops, have a good talk to one of my uncles or aunties or cousins. Mostly but, going out was just going into the front-yard. It was good to get out in the fresh air, the sun shining on you and everything. I would sit out there for ages

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in my driveway and watch the people walking up and down the road.

Watch all the cars go past. Where are they going… I wish I was in that car going for a ride… that’s what I would think to myself. Sometimes I felt a bit sad, a bit angry.

When I was a teenager I told my friends that I would never get married. That I would never have kids. When they found out they all said “I thought you weren’t going to do that, get married, have kids.”

But that was teenage talk, things are different now. Different than I imagined they would ever be. I didn’t even know that disabled people could have children back then. They spoke to us about sex but when I heard that I thought no, I’m not having it, no way. That’s what I said then, but teenage life has gone and grownup life has come. I’m glad it has. My parents have been good to me but they lead their own life now and I lead mine.

Maurice – I came from a family of Jehovah Witnesses. My father died when I was three. I think it was something to do with him having too much salt. After that all I had was my mother and all she seemed to have was her religion. It killed her in the long run. Life with her was never easy. Life often isn’t. Sometimes you can go back and think about things and it can be rather saddening, you think of things and you wish all that sort of stuff wasn’t really there.

She had an iron cord that she kept. It was six feet long and she used it doubled up. I got to know that cord pretty good. She kept that going – kept whacking us around with that cord – till I was sixteen years old

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and it only stopped then because she died. I wasn’t glad that she was dead but I was glad to be free of the brutality. Sadism really.

She needed operations but those Witnesses don’t believe in transfusions. One was a goitre and the other was a hysterectomy.

She wouldn’t do it, wouldn’t let them do anything for her. Well, finally it got her. Only 38 years old. People have their beliefs but I certainly don’t have that religion anymore, that’s for sure. I don’t have any religion now.

Later I vowed and declared I’d never bring my kids up the way my mother brought us up. There’s a difference in getting your kids to do what you want them to do and beating the crap out of them.

It’s something you’ve got to get a hold on and freeze it. It’s a cycle that can’t go on. You’ve got to cut that out.

Carole – The thing is if I didn’t move down here I would still be at home. People don’t think of that. I’d still be stuck sitting in my chair and being really bored in our house, or maybe outside watching things go by. So I’m glad. At first I got very hurt coming down here, but now I’m very very happy.

Maurice had feelings as soon as he met me, that’s what he told me – what he told me later on – but you see I fell for his son so he backed right off. When things went bad and I got very upset, that’s when Maurice stepped in again. It was quite strange at first but then as the days and weeks went on I started to get used to it. I’d get used to it and then I’d think whoa, he’s too old, I’m falling in love with someone who’s an old man. Bloody hell, he’s like my grandfather. But then he

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said it’s not what’s in your brain but in your heart, and I thought yes, it is from the heart and age has nothing to do with it. The heart is the most important thing. And that’s when I went to live with Maurice.

Everything got better after that. He did everything good for me.

The thing is I’m a real outside girl. I’ve had so much of my life inside it’s like being in a prison, so if I can get out and about, go for walks, I enjoy that so much. I’ll tell you something else, when I was up north I use to have seizures, bad ones too but since I’ve been here I haven’t had seizures at all. Well that’s Maurice, and it’s been good for him as well. When I met him he had bad arthritis, actually he was crawling along sometimes, couldn’t walk at all. Then we started walking all over the place – he was taking me out everywhere – and he got better and better and now he can’t stop walking. I got him walking and he got

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rid of my epilepsy. That was a big thing. It’s all been such a change, like a magic change because he was doing all these things for me, it made me feel like he loved me. Some people stare at us, like hey, is that your daughter. Or if we’ve got the kids with us, is that your grand kids and when he says no, they’re my daughters you get the funny looks, but I don’t care one bit about the age thing, not any more.

In all the time we’ve been together now it’s never made any difference.

It’s more about having somebody that cares for you. It makes me sick now when people say something or they have something in their head.

They don’t know what’s in my heart. I just turn away from them, think about other things.

The day he asked me to marry him he just said it, just asked me as I was heading out to the kitchen. I thought, what did you say? I got such a shock, I said no, and then he shut up and I thought what the heck has just happened here. I thought, him marrying me! What’s he doing saying that to me. But once we had talked about it, said our things, I thought yeah, why not. He’s the one in my life. He’s the one that’s been loving me with kindness. He’s the one who is doing all these things for me, no one else. So why not. And that’s when I said yes to him.

Yes, I would.

It was my life now. Coming down to Christchurch was the big change. Away from my mother and father. I love my family but my mother was very protective. She was always looking out for me, which meant I spent a lot of my time inside. She never wanted me to have a boyfriend. I couldn’t do very much at all. But down here I was away

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from all that and I could do what I liked. Go out with whoever I liked.

When she found out I was getting married she really blew up but my father just said go for it. And I said, thank you dad, that’s what I needed to hear. I’m really a daddy’s girl. I love him very much.

We got married up at the gondolas, on the Port Hills and it was a beautiful day. Turned out beautiful for all of us and I got the funny feeling my nanny was looking over me as well.

The thing I remember was everybody telling me to hurry up, hurry up. It was a Saturday morning and it was my birthday as well – yeah, I was 28 and we got married on my birthday. It was an early wedding, 11 o’clock in the morning, which is why everyone was saying hurry up but I just said shut up, I wasn’t going to rush. My father gave me away.

I’d asked him to give me away and even though he wasn’t too well he still came. “Don’t you worry about that,” he said, “I’ll be down there to give you away.” He came with my mum and my two uncles and my aunties. All of them came down on the ferry so I had a bit of my family there. Yep, that was really good.

Coming up to it all I was a bit nervous. Up until the actual wedding I was pretty shaky – when I came to sign the register I was shaking like mad. But after all that was done, after we said the vows and all that, I started to relax. Yeah, after all that stuff was finished I felt a lot better.

When I signed that I thought somebody… somebody wants to be with me very much. Somebody will love me very well and he will be there for me all the time.

After it was all done we went to the reception and had a feed, opened our presents and said our bits and pieces, then we all went around to

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Maurice’s daughter’s place for a party. It was a lovely day all round.

It just felt good. And when it was all over we came home together and relaxed in front of the television. I just sat there and thought to myself Wow! I’m married. That’s the first thing that came into my head.

All those years I said to myself I’ll never get married and now I was.

Someone to be happy with, or comfort you when you’re sad – especially if you’re sad. Someone you can really trust. That’s Maurice you see, he’s always around me and taking me places I have never been before.

He takes me everywhere.

Maurice – At the end of that day we sat down in the lounge together and put our arms around each other. We were supposed to be watching TV but I don’t think we saw too much of that. Then we decided to go to bed and the feeling that was flowing between the two of us was really special. Carole kept telling me – she says, “You make me feel so warm,” and she says, “You know I’m very happy.” And I said back to her I was really happy too. And we were.

I’d woken up that morning and I was thinking of all those things – those feelings – of the last six months together. Being able to be with somebody, a particular person that you really love. There was like a rushing… a sort of jitters, an eagerness of feelings that go through you and an anxiety too, to get it over and done with so you can be one.

And then as we signed the register everything, all that shakiness and tension, it just flowed away and we were able to celebrate.

We got married on Carole’s birthday, she was… let’s see, she’s 33 now, so yeah, she’d have been 28 that year. Some people have said about

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the age thing but love doesn’t worry about age or race or anything else. When there’s love in your heart age has nothing to do with it.

Everything was good that day, oh yeah, it was quality. Getting married didn’t turn our life upside down, it turned it up the right way.

We were hoping to get married on the gondola itself – going up on it – but that wasn’t possible. We could have done it up the top there but that would have cost a lot more so we did it in the foyer down the bottom. We definitely got a ride in it though, yeah, a free ride in the gondola and then we went back to the reception at a tavern along Pages Road there, what’s it called, McIntosh’s or something. Funny thing too, it was suppose to be a wet day, but then hey, it turned out nice and fine didn’t it.

Like I said, it was real quality and that is what our marriage has been ever since. A lot of marriages are up and down, people throwing each other around, punch-ups and stuff, but we haven’t even found anything we can have an argument over. It’s weird really, not being able to find something you can have a good argument over but there you are, it’s quality in the heart. If you’ve got the really deep feelings it’s incredible how easy everything else becomes. There’ll be a summer day out with the chair somewhere and you know, people’ll be thinking we’re idiots, but to hell with it, it’s just us laughing our heads off and having fun. That’s us see, instead of your life being on the dark side you’re thinking in the light. Love passing back and forth, that’s what quality is.

One thing you’ve got to do is understand people if you’re going to marry them. Honest feelings. There’s a lot of crap out there and

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if you’re not careful that’s what you end up with. It’s the feelings in the heart that count most of all. If you’ve got the real stuff I think it overcomes anything else. That’s the secret, real love and no conflicts.

That’s what I feel anyway. The longer our marriage has gone on the stronger it’s got. Oh yeah, it’s stronger all right. Much closer, and with the children closer still. One thing I’d like is to still be around when the kids get to college age. I guess I’d be hitting 80 by then, but yeah, that’d be a delight. Hopefully I’ll still be walking upright when the time gets here. Hell I’d still like to be around when they get married but that’s a long way off. Fat chance I suppose. Then again, why shouldn’t I be.

You never know what’s going to happen. Ever.

Carole –You know, I told my friends, I promise you one thing, I won’t be getting married and then I did. Then when I found out I was pregnant I remembered I’d said I’d never be having kids. That’s what I said and look at me, I’ve broken both promises. When I first found out though, oh man was I surprised. Bloody hell I was. They had to do a blood test to make sure but then yeah, they said yeah, you are.

And wow! I mean hell, I didn’t even know I could get pregnant.

But boy I was happy, oh yeah, yeah, very happy.

When I rang my parents my dad was alright, he just said congratulations but then he handed me over to my mother and boy did she blow me off. And later, when I had the second one she really let rip again. I said I don’t care, there’s nothing you can do so don’t worry about it. She was worried about how I was going to handle it but I said, you just watch, you just wait and see.

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After that I found out a few things myself. The first time I was pregnant it was tears of joy. The second time it was oh no, not again, God help us, not again. It was pretty hard in the wheelchair all the time, can’t walk around, can’t move your legs, just sitting there on your bum day after day. I must say I was pretty glad to get them out in the end. But then you see them and they’re beautiful and you forget all the other stuff. The only thing that hurts now is I would like to do more things for my girls. I can feed them and that but I would like to dress them and bath them which I can’t… I have to watch other people do that and sometimes it can get you down. I watch them and I start thinking I wish that was me, not her – not someone else. Or if it’s Maurice it makes me angry I can’t give him a break from having to do it all. Then I just have to stop thinking like that cause it’s the way

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of my life, it has to go like that. It’s hard though. Sometimes I’m out in the street looking at other people with their kids and I’m wishing I could do things the same as they do. I try not to let it come through but then sometimes you can’t help it, it comes out in tears.

You can get pretty fierce about your kids. Sometimes I daydream about when they grow up. If things will be good or bad for them.

You never know what’s out there for them in the future but I hope they find someone like their father that is true to them, not hurting them in any way. If anyone hurts them they’d be sorry. They’d get their friggin’ eyes punched in from me for a start. Yes, if I think like that I can get quite angry.

Maurice – I meet Carole in 1999 – getting near the end of 1999 – just in time for the new century and to be honest I wasn’t in the best of shape at the end of the old one. They’d put me off work a long time ago with my heart and by now I’d got the arthritis pretty bad as well.

It was in my knees, it was in my hips, I tell you I was virtually crawling around. And that’s again where we helped each other. We were sharing things, I was sharing my life with somebody else again and when your heart goes out like that it’s amazing what it can do for you. I started pushing Carole round in the old metal chair and it was fun, taking her outside to see the life that was going on all around and that’s what helped us both. A little way at first, just to get outside of those four walls, then further and further. To the mall, to the beach, anywhere to get out and be mobile. She hates to be confined and that’s when things started to fall into place. Carole used to have epilepsy before, but that’s

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all gone. We’ve not seen a skerrick of that since we came together.

As for myself, I can walk anywhere. Walk all over Christchurch no trouble. The arthritis I had is gone – long gone – all those bad things go by the board. You defeat them and that’s why I say it’s what’s in the heart that really counts. It’s the heart defeats all.

I’m going to be 64 in a couple of months and I tell you I’m loving life more than I have done in a long while. Okay there are always some things – like we could do with a bit more money at times – but those are things that could be better in everybody’s life. I was just saying to the case manager at WINZ the other day, I said, “I’d like to get out and get some work.” And he said, he says, “No, you’re very well employed at the moment. You’ve a lot on with the family and we know you’re doing your best. You keep it up where you are.” And yet you still get the odd person who’ll turn round and tell me I’m a lazy bastard, that I ought to get out and work. It’s the one thing that irks me. What do they know – they don’t know. The world is full of people who use their mouths before their brains. Give them a week in my place is all I think.

I don’t know that I’d like to be rich; I don’t think I could handle that but money can be a problem all right at times. It’s a responsibility with Carole and kids to make sure they get fed and clothed and all.

If I have a wish sometimes it’d be for a little more money, not too much, enough to help out, that would be all. Actually, if I was going to have a wish I would wish for Carole to walk. Give her what she wants, to walk hand in hand along the street, that would be my wish.

With money we have our weeks that are okay and other weeks that are more a disappointment. Trying to get things for the kids, wanting

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to get shoes and clothes and all that for them, that gets hard at times.

You don’t get all that much on the benefit and so it’s all about a squeeze here and a squeeze there. Mostly we get through.

A disappointing week would be a time when we might wish to do something – like for instance when Nana Mouskouri was here. She’d be one of my favorite singers so that’s when you start to wish you had the money to go and see her, be able to take Carole out to something like that. Well, not likely. Not possible at all really because what money you get in is going out all the time in power bills and what have you.

We had to pay out $285 last month for power and that’s a big bit out of your money. If things get too bad I’ve just got to tottle in and see our case manager, see what he thinks. If you’re needing things for the kids say, you might get a grant. Sometimes it’s a loan you have to pay back, sometimes it’s a free grant you don’t have to pay back. Depends on circumstances. It was always a struggle to start with but you learn to live with it. You get pushed into certain areas, like you’ve got to stay within bounds, go any further and you get yourself into trouble. You learn to live with that. It’s gone past the stage where I’m losing hair over it, gone real past that stage. A good week… well, the week Shana was born and the week Alana was born, they were two good weeks.

But let’s see, besides that a good week… it’s very hard to say because they’re all much the same. We get along, they’re all pretty good.

Carole – Not being able to have a job, that’s a frustration, especially when it comes to payday. When you’re on a benefit you’ve got to make sure there’s enough for the kids and that there’s going to be food in the house.

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We don’t end up having very much to spend on ourselves. It’s hard for people like us, getting the sort of money we need into our lives. At the moment it’s hard with the kids growing out of their old clothes, that’s a big expense. Maurice and me could do with some as well but that’ll have to wait. By the time you’ve done the rent and power and groceries it don’t leave us too much at all. Payday is once a fortnight so we’ve got to stock up enough to last us the two weeks. What I look forward to most on paydays is going out to lunch. We try to do that every fortnight. At the moment I like the Boss Burger from McDonalds. Actually I really enjoy Burger King too but there isn’t a Burger King at Eastgate. Maurice likes the Chinese. If we go there I have the Sweet and Sour Pork. That’s my favourite from the Chinese place. The Boss Burger but, that’s my real favourite. When pay week comes around I’m just waiting for that.

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I don’t remember the dreams I have very well. As soon as I wake up they disappear. Anyway, I’d rather have a wish than a dream. To walk, that would be my wish. If I had a genie or a wizard that’s what I’d ask for, that would be a wish and a dream. Just imagine if you could stand up and make your feet do what you wanted them to do. Be up there walking beside your family, not sitting around in a chair and having people stare at you. I see them looking – they don’t say anything, they just stare – and I know what they’re thinking in their minds. It’s just… sometimes inside me I get a bit angry. I want to swear at them and that’s a bit of my mother coming out in me. Come here and I’ll give you a punch, that’s what it makes me feel. It’s never been a good feeling. When I was young I used to put my head down and not look at them. I’d ask my parents to take me home, I was always wanting to

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go home. In the end I had to get used to it. Just put up with it from people who should know better. Now I look straight back. Sometimes I say something but mostly they don’t care, they just turn their heads and walk away. They think I’m nothing… that I can’t do nothing, but I friggin’ can. What I wish is, I could do more.

I sound a bit grumpy there but I’m not really. I’m a much happier person than I used to be. I understand more about things now than I used to. I like being me and what I have. I’ve got my husband who’s always been kind and loving to me. My children I never thought I would ever have. Just being Maori is a good thing which I’m lucky to have. All my family in Wellington who love me… yeah, all my whanau around me, I love that. I wouldn’t want to be without them. There’s not much I’d swap. I’d swap my body – to have a body that would let me do things – but I wouldn’t ever swap who I am.

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The Man With No Arms & Other Stories

Marilyn Stratford

We had a bit of a family tea last night and it crossed my mind to talk with my sister about family things – a few questions I had on my mind – but in the end I didn’t. I don’t know why, I suppose I started to think how everything is about now – what’s going on now. That we live very much in the present and what happened a long time ago is over. What we’re going to do next, that’s what we tend to think about. Mostly we are interested in ourselves and what we’re doing and we forget to ask questions of other people. What’s really happening in your life? And in a way – to do that – it’s kind of like you’re being too inquisitive, too nosy. How far do you go? I guess people find that intimidating. Hell, I find it intimidating.

Talking about this whole thing is really challenging for me…

I guess I’m beginning to realise that we’re not as in touch with our feelings as we think we are. We’re not. There’s a great deal of stuff deep down that you don’t admit to. I don’t know that I’ve ever really got to the root of my feelings… my thoughts on certain things.

I suppose I’ve tended not to think on particular things because if you do it becomes an issue and really you’re better off just to get on with it; find a solution and carry on. It’s not until I’ve become older that I’ve even begun to have certain thoughts.

There’s a difference, don’t you think, with children today. They’re so switched on and I don’t think we were. Perhaps we were more sheltered and so we just sort of floated. Today kids have more direction. They seem to know where they’re going. We were in the fifth form and still didn’t know what we were going to do and then all of a sudden it was

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scramble, scramble, scramble. Where would we go? What would we do?

My mother was a housewife who never worked after she married, or at least, after she started having children. Our dad was a very supportive man who saw four kids through private college – I’ve got an older brother and twin sisters who are younger than me – on a carpet layer’s wage. And to me that was a great thing he did, giving us that education. Mum was good at everything she did, cooking, sewing, gardening; she was a huge gardener and dad, yeah, dad worked hard.

During the day he laid carpet and at night he was in the garage sewing it up. It didn’t come in one big width in those days. We’d go out there to the garage at night just to be with him.

When our time came dad found a carpentry apprenticeship for my brother and mum spoke to the hairdresser for one of my sisters who went off there on work experience. With me, I suppose mum and dad were at a bit of a loose end there. What will she do? They never talked about it, it was just like, you know, tomorrow’s another day, it will work out. And I guess I’ve grown up with that philosophy – go to bed, have a good sleep and it will be better tomorrow. You’ll look at it differently. It works too, not always, but sometimes.

In the end I think I told them what I was going to do. I said, “I’m going to the Tech.” I was in the commercial class at school and I’d done School Certificate, concentrating on shorthand typing and things like that and so it just flowed on from there really. So yes, I was going to go with the other girls and do that. Looking back now I don’t think I had an option. Probably I knew I was destined for it and didn’t think about anything else. I guess I knew that I needed a

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sit down job. I knew I couldn’t stand to do shop work. I knew I wasn’t in the professional class or the general class, the ones that would become nurses or perhaps go on to further education. In fact I quite enjoyed shorthand and typing so I didn’t feel the need to think outside that square. I suppose I knew my options were limited and all my friends were going to be secretaries and so I was going to be a secretary too.

That was okay with me. Perhaps if I said that job opportunities were limited, that would sum it up. Actually, later in life some of the girls did go back to extra studies, one or two went to university, but at that time you were never expected to.

I did enjoy school but I was one of those children that just sort of floated through. Just an average student in one of those good classes that really got on well together. We had a reunion not too long ago and most of us turned up for it, just slotted in like we were back at school; it was such a good time. But you know, it’s sort of interesting what comes out later in life isn’t it. People’s perception of each other. One girl in particular, she said to me, “You know, I was always scared of you at school.” And when I thought about it she was always pleasant to me and me to her but she was one girl who never really came near me.

And when I asked why, she said, “I couldn’t come near you because of how you were, you always seemed so sure of yourself, determined, like you knew where you were going.” Well that blew me away. I don’t ever think I had that inside of me but somehow that’s what she thought.

Strange, isn’t it, the way we think about others.

Another thing that came up was how we used to catch the bus into town – up into Colombo Street where we changed buses – and then

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it’d be “Where’s Marilyn?” You know, put her out first and that’d stop the traffic so we could all cross the road together. Made me laugh to remember that. Yes, I loved being there at school, I loved the company and the different things we did every day. I wasn’t a huge scholar, just middle of the class, and I wasn’t treated any different from anybody else which was good. I mean there weren’t a lot of highs, but then, there were no lows either.

One thing I hate is to be beholden to other people. Independence is important to me, really important. That’s one thing I’d never want to lose. I’ve always believed that there’s nothing I can’t do. I might have to do it my way but I’ll do it. If I want to climb a hill I will. It won’t be the same way that you might do it but it will happen. If I want to play tennis, swim or any other darn thing, I will. I don’t have any use for a word like can’t.

Being in hospital for five months, being away from my parents for the first time – my first operation – that I suppose was the beginning of my independent streak. Not having my parents with me for most of that time – not seeing them much until I was moved up to the new Christchurch spinal unit – yeah, I think it came from there. I seemed to grow away then from everything else and become my own person.

I’d been diagnosed with a tumour on my spine when I was 11 years old. One of the nuns picked I had a limp at school and I got taken to the doctor. A lump was found on my back and we were told then that it was a tumour on the spine. Turned out to be a benign terratoma about 11 centimetres long in the spinal canal. They removed it down in

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Dunedin –­Professor Robinson did the operation – but it had already interfered with the nerves of my right leg so I ended up with what is called monoplegia, one leg paralysed. In fact I was lucky to come out of the operation with only one leg affected.

Back then of course I didn’t know all that much about things, I don’t think a lot was explained to me at the time. Looking back I wonder how much my parents knew of what was happening, just how much had been explained to them. I’m not sure what effect it had on me at the time. I think it really took years to sink in. It wasn’t until I was older that I realised it must have had a huge impact on me. I do remember snatches of loneliness in hospital; there by myself, and every few weeks my parents would come down which must have been a huge expense for them. Imagine, all that way in the car with three other young children and having to stay in motels and so on, the cost of it all. In those days people didn’t do that sort of thing so much. I wonder sometimes how much of a trauma it was on them all. We’ve never really talked about it.

I do remember being in bed all the time, which I now understand as a sort of rest period to see what would knit back and what wouldn’t.

I had stitches up two thirds of my back covered in this pink sticking plaster and when they took them out they had to rip this plaster off.

They started slowly but it just wouldn’t come properly and I remember screaming as they ripped it off. They did it twice and then told me they’d not do it again but oh no… no, it took me ages to stop worrying about that. I was quite petrified they would do it again.

The other thing I remember was food. In those days I never ate vegetables and the meat was always brains or kidneys, things like

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that. Well goodness, to a young kid that was just the pits. And green.

Green was everywhere. Green bedspreads, green jelly, green cordial.

Green cordial! God that’s something I never want to see again.

Eventually I came back to school but of course by then I was wearing a calliper and had two crutches. Now days I have a plastic fantastic but back then it was just laces and steel. Also for years afterwards in May, Professor Robinson would come up to Christchurch and off I would go to see him. There’d be 10 or 12 students in the room with him and he’d say, “Oh, you don’t mind getting undressed do you.”

And I’d say, “No… no, and he’d stand there with his back to me explaining the situation, “This is my favourite patient, blah, blah, blah, and then he’d say, “What level is this?” None of them would know and behind his back I’d get sick of waiting so I’d start mouthing silently “L2, lumbar 2.” Eventually some bright spark would catch on and say to him, “L2?” After a couple of years of telling them behind his back I got totally sick of it and the next time he said, “You don’t mind these students here do you Marilyn?” I told him I did. I said I’d had enough of it and they all piled out. I suppose that was me having a little bit of power. I remember that clearly, that day.

It was my mum and dad who were my mainstay during that time.

They were always caring people but you know, they had a child who was disabled and they showed a great strength of character in the way they dealt with it. We had so much fun together, loads of fun.

It always felt good to be part of the family, to be their daughter. I suppose if you look at the construction of a lot of families there is always one child – I mean, you’re lucky if you find yourself in a family where

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everyone’s extremely healthy. Often there’s one who’s not quite so healthy. That’s just the way of things.

There’s three things about work; you need to enjoy what you do, you need to feel good about the money and you need to like the people you work with. Most important of all is to enjoy the people you work with. For many years I worked with people who were ultra serious.

Yes they laughed, but they didn’t really laugh. They smiled but they never got enthusiastic about life. It was the exact opposite of who I am.

I like adrenalin, I always want to grip onto life and give it a shake.

Then in my forties things changed. I was made redundant. We knew it was coming so it wasn’t like it was a big surprise. At the same time however, my mother died. In fact she died the week before, they called me in after the funeral to tell me I was being let go. Just about all of us in the department were gone. That was it. Full stop. The other girls were grieving about it quite badly but I was just blanked out.

Well, compared to what had happened it was unimportant wasn’t it – simply didn’t rate.

Perhaps the scariest part of dying – the scary part of death – is with the living. You are scared of the loss, of losing that person that means so much to you. You wonder what life will be without them. That’s the worst part. It was a happiness to have the teachings of the church at that time. Probably a comfort. I’m not what you’d call deeply religious but I was brought up in Catholic schools and I suppose I’ve tried to base my life on the teachings of being good and kind to others. Do unto others and all that. I’m not fanatical – that sort of stuff scares me – but

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religion is like … well it’s the beginning and the end isn’t it. When you come into this world you are baptised and when you go out the priest stands over you. I don’t ever think too much about life after death but I do have a sense that it’s okay. When my aunty was dying she said, “She’s come, she’s come to get me.” My other aunt said, “Who’s come?”

“The lady,” she said, “the lady standing in the corner, she’s waiting for me.” And that to me meant something. I believe in these experiences and from that point of view it’s not… it’s not so scary. Yeah, there’s a comfort in that.

Ironically, redundancy turned out to be very good for me. After they told us we were going, they then said we had a year to retrain.

They were quite decent in that way and I decided to do a medical secretary’s course. When I’d finished I started applying for jobs. It was a few months and 34 job applications later before something stuck.

I got a very good job at Burwood Hospital, a temporary position at first – a woman on maternity leave – but then it became permanent.

I was lucky, I’d struck gold, but it gave me an insight into how many other people have been put on the scrap heap. I came out the other end and that gave me strength but I also know now how it feels.

I liked the woman who interviewed me very much, I think I would have walked over hot coals for her when she gave me the job. I said to her afterwards, “It’s interesting, I was worried about putting on my CV that I went to the Paralympics and the Wheelchair Tennis World Team Cup and so on. With a lot of the positions I applied for I ended up taking it off.” She said, “Why would you do that?” I said, “Because they might think I’d be asking for time off work for sport and because they

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would click that I was disabled.” I mean that was obvious – but that they’d start to think about it in a negative way. Think I’d be off sick all the time or have other medical issues. So I just took it off. “Well,” she said, “I’m glad you didn’t this time, it’s the very thing that sold me on you. It’s what convinced me I wanted you.”

So you never know do you. Redundancy changed my life, turned me round and upside down but in the end I fell on my feet. It gave me the opportunity to change into something I really wanted to be.

It also made me realise how much of my life I’d spent in a sort of vacuum. I came to work, I went home again, and got no enjoyment from it whatsoever. In the legal field it’s all point scoring and people looking out for themselves. At the hospital it’s the exact opposite. It’s a community, people who care about each other. Do you know I’ve been

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working for nearly 30 years and I’ve had to wait until now to actually laugh at work. I laugh a lot now. I love it.

It’s an interesting thing… I’m just thinking here about what I said before, about getting on with things. Probably I’ve become more aware of myself over the last number of years than I ever was before. Certain things have become more obvious to me. If you don’t think about things, then in some ways they don’t exist. And when I was younger I never thought about being disabled because I lived in the able bodied world. I worked in the able bodied world, I went to school in the able bodied world. I was able bodied!

There must be many things that shape your life, certainly my parents were one. My education took me in one direction and I guess friends shape you into a mould that’s acceptable to them in some way.

And yes, my disability too. About 18 years ago I crossed over into the disabled world and my life was suddenly enhanced. I got lucky again. I found myself with a foot in both camps and I got to enjoy both worlds.

It happened I was out drinking one night – one of the things one did in those days – and a friend of mine was there with a whole lot of ‘wheelies.’ “Come on over and meet everyone,” he says. Righto I thought, okay, and I followed him over. I was doing a bit of swimming in those days, just trying to keep my weight down, keep fit, and one of the guys said, “Why don’t you come down and swim with us tomorrow at the hospital pool. Come on, it’s free.” Okay, so I go down the next afternoon, walk in the door and there are three of them – a delegation – waiting for me. I thought, help, marched up and put out my hand

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and that was it. I found myself joined up with Parafed, the Paraplegic and Physically Disabled Association, and sucked into every committee that was going.

At first I felt like a bit of a fraud because I could walk, I wasn’t in a chair. But then after a time I began to feel yes, I do fit here. There was an acceptance that, hey, I had the same problems. Perhaps before I hadn’t realised them in the same way – I’d just recognised them as my life. You accommodate your disability; you internalise it and don’t talk about it. But suddenly these people were talking about it; they were putting it into words, and the sort of problems they talked about were things that I recognised. Christchurch is one of the friendliest cities in the world for disabled people but there are still pitfalls everywhere.

It’s just something you do all the time, look out for problems. Is the ground uneven or are there shiny surfaces where crutches can slip.

You hunt for toilets that are easy to use. Getting through doors that people slam in your face is another one. You learn to get the stick between you and the door pretty quick if you’re behind someone. You’d be amazed at how unobservant some people are. So yeah, that’s when I realised, when it got put into words like that, I had a pretty close affinity to these people.

Not long after I joined Parafed a guy came back from Australia and said he thought we should try wheelchair tennis here. It’s not a lot different than the able bodied game. There’s only one rule change, the ball is allowed to bounce twice. The first has to be inside the court the second can be out. The emphasis is on mobility and speed. I ended up on the inevitable committee and in fact I’ve been President of

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New Zealand Wheelchair Tennis now for the last seven years. I guess I’m a veteran these days but we won’t tell anyone that.

To be honest I think tennis was the making of me. I know my life changed completely when I began playing. It made me so happy.

I remember someone actually saying, “You’ve got more sparkle in your eyes these days.” I was still working in my old job at that time and I think it became the way I coped with it all. Being on the court, giving it everything, it helped burn up my frustrations. I could start the week afresh, a blank slate; looking back I can see how much I relied on it to get me through. I guess I’ve been one of those people that cruise through life, my goals have been mini rather than major but with tennis it’s been different. It became something I could totally throw myself into. I felt like I’d been given a gift. It’s true, I sat down the other day and was thinking if I’d been able bodied would I have done all the things I’ve done and the answer, of course, is no. Wheelchair Tennis has opened up such a big world for me. So many goals fulfilled.

World Team Cups which are held in different countries every year, Paralympics, Australian Opens, Japanese Open, all of that. I’ve been to so many places and meet such lovely people and that’s definitely a gift. Because of it I’ve had a dream, without it there would have been no dream at all.

I suppose everybody has dreams. Their ideal life sort of thing.

I’d like to win Lotto so I could play tennis all day. Wouldn’t that be something, being able to retire early while I still have plenty of tennis in me. And company too, that would be another dream. Meeting

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someone I’d like to be with. Someone to come home to at nights, to share things with. You’re more accepted in society with an appendage on your arm. I had a friend once who said to me, “Next time we’re down perhaps it would be nice if you could have a man for my husband to talk to.” Things kind of fizzled out after that. You know, I thought what sort of friendship is that, aren’t I good enough?

It’s not as if I’m not conscious of the stigma attached to single people – “Marilyn will be coming by herself.” It’s a foregone conclusion that you’ll be by yourself and it’s like you have something wrong with you because you’re single. Of course no one talks about it out loud though, it’s like a forbidden subject.

I guess when it comes to some things I have my shy side. It takes me a while to get to know people, to feel comfortable, to be able to

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say the right things. When we were going to pubs and so on it was like a false atmosphere. Everybody’s on their best pub behavior type of thing – the old pulling game – and it’s hard to know what people are really like. I’m probably not at my best when I first meet someone like that. It’s difficult… I’m not quite sure what I’m trying to say here really. Just, I suppose, that it’s sometimes difficult to get a perspective on things.

I remember a schoolmate who was always nice and we always passed the time of day but I can’t ever remember having an in-depth conversation with her. And I think that’s what a lot of guys are like.

They don’t put themselves forward because they don’t quite know how to take you. People in general are not that comfortable with disability and guys in particular label it with problems they don’t want to get involved with. I mean living with a person that’s disabled is not the ideal picture is it. Not in this world, ideal pictures are things you see in a magazine.

There’s been a couple of times in the past when I could have married but one way or the other it didn’t work out. Nowadays all that seems a bit of a non-event, but don’t get me wrong, that doesn’t mean I wouldn’t like to meet someone. I’m no different from anyone else in that respect. Perhaps it’s because I’m getting older that I think about it a little more than I used to. The problem, of course, is to meet the right person, someone who’s single, available and who you could like.

Someone who might actually broaden your world. It’s a big ask. You have to be realistic about it. If it were to happen, well, that would be a good thing, if it doesn’t, you carry on and ask yourself what you want

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to do with the rest of your life. Obviously I’m not going to sit around and wait for someone to walk in the front door, I’m going to make the best time of it I can.

A disabled friend and I have thrashed this out many times, we get into this discussion about the difference between males and females. Friends will say to me, “We don’t think of you as any different.” But that’s a female response. Males accepting females with a disability is the problem here. The other way around women seem to have this sort of maternal instinct; finding a man that will accept you for who you are and not how you might look, that’s different, those guys are pretty special.

They’re also few and far between. But that’s how life is, so, get on with it. Being realistic there’s probably a very small chance of anything happening but yeah, if I met the right person, I wouldn’t complain.

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People sometimes ask if I’ve missed having children. Of course I’ve thought about it but I don’t think I’ve missed it. It’s never been a huge issue in my life. I mean I have my nephews and that’s good but I can’t say I’ve ever had a hankering for children of my own. In fact I have various friends with teenagers and I sometimes think thank God that’s not me.

No, I’ve had a full life. I’ve done what I wanted to do when I’ve wanted to do it. That’s the advantage of being single I suppose. That’s the other side of it. You don’t have to be irritated by other people’s bad habits or make all sorts of compromises. I’m the type of person that comes home and thinks, I have to do this, I have to do that. I’m a ‘have to’ person. I can sit and watch television but I’m up every ad break moving the hose or doing the dishes or making a cup of coffee, getting things done, that’s who I am. So I’ve often thought, you know, what would I be like if I did live with someone? Would I do as many things? Would I get lazy? I know how easy that is. The sort of holiday thing. Sitting in the sun or reading a book, just dozing away and not doing anything. I wouldn’t like to get like that or go back to the old ways before I had tennis. On the other hand I could fall into the trap of always doing everything. Perhaps I’d be a bit afraid of that too, doing the woman thing. Doing it all, just to prove to myself I can. Who knows? Maybe I’m frightened of being too bossy when what I really want is to be able to share.

I guess the thing about relationships is they take you out of your normal world. Talking to people, learning about other people’s lives, what’s important to them, it’s good. Listening to another person’s point

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of view you can learn to think differently about the world. Fitting other peoples views into your own life is part of sharing I guess. Being part of someone else’s life can enhance your own, and yes, it can change you a little bit too. It has its advantages I suppose… I guess I just don’t have a firm idea about it. At the end of the day if I was in a relationship that’d be good, if I’m not, it’s okay. It’s still good.

Ultimately, I suppose, we are all disabled in some shape or form.

If I ask myself, did my own disability shape my life, I would have to say yes, it probably did. Not because I have a problem with it, but because other people do. It’s very much that visual thing; they see the disability before they see me. Some people can approach it, many can’t. Perhaps they find it threatening. They don’t want to deal with it; they don’t even want to know it’s there. There’s still a certain stigma attached it seems.

Old prejudices, and the fear of difference. My grandmother knew a woman who hid a Down’s syndrome child in her house because it was shameful to have such a child. Well perhaps because of mainstreaming in schools – the fact that all kids are welcome these days – those sorts of attitudes will become a thing of the past. Maybe now the secrecy has gone we can learn to accept each other for who we are and the way we act, not because of the way we look.

That would be nice wouldn’t it, but the reality is I don’t see it happening in my time. And how that makes me feel… well, you become hardened to it. You try not to think about it a lot. If you thought about it too much you could become very upset, so why do that. I guess I’ve grown a bit of a shell around myself over the years. If it’s been a bad

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day you try to forget about it. You make a pact with yourself to get up in the morning and say it’s a new day. It’s how I deal with my world.

You may have gone for a job let’s say, you get down to the last two or three but you never get the job. You never get it because these people can’t see where you’ll ‘fit into their structure’. How you deal with that is something else again. They’re the ones that don’t have a positive attitude; you’re the one that has to live with it. That’s why you grow the shell, so you’re not continually being bowled over. Without it your self-esteem would just erode.

Everything happens. A bit of everything. Some people dismiss you because they don’t want to get involved, they don’t know what to say.

They don’t know what to do. Or it could just be one of those things in life where they look at a person and think, they’re not my sort. Life is all those things but then every so often you meet somebody different, someone who pumps you up. You might be having a bad week and someone will give you one sentence, one phrase that makes you smile.

Makes you feel good about yourself and suddenly it’s a good week and that person is special.

Talking like this, it certainly raises some issues doesn’t it, a lot of things that never entered my head when I was young. The sort of searching questions that are not easy to contemplate – I keep thinking what do I really want to say. I’m really just your average Joe Blow who’s perhaps not that good with all those deep inner feelings. I don’t know if it’s because I don’t want to be, or because I can’t be, or whether I’m just not in touch with them at all. I guess in a lot of ways I’m quite reserved.

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Something I am conscious of is all those things that appear as you get older, a sense of winding down, the odd ache and pain, the need to maintain your well-being, but there’s also so much more I want to grab hold of and do. It’s still important to me to find new things to do.

At the moment I feel I’m at bit of a crossroads, waiting for some new direction to come to me, wondering what it will be. I get excited thinking about it. Sitting on tender hooks ready to sprout wings, that’s me.

That’s how I am. Okay it hasn’t come yet, but it will. I know it will.

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The Man With No Arms & Other Stories

Peter Bradley

If you want to start at the beginning, it’s called metatrophic dysplasia. That’s Latin for something or rather but basically it’s dwarfism. I’ve got this curve in my back – my body kept growing but my thigh bone and the bone between my shoulders and my elbow didn’t. That’s what I was born with and the first thing they told my parents was that I wouldn’t live. That’s what they said – what they thought – 48 hours and it’s all over. That’s what I was told, but hey, 22 years later I’m still sitting here. Still in the game and not getting ready to leave anytime soon.

Yeah, all right, I look a bit different but guess what, we’ve all got our problems. People will persecute you because you’re black, or you’re white, or you’ve got a big nose. Exactly why anybody does that, goes around attacking others just for being different is beyond me. Nobody’s normal, we’re all unique, that’s my philosophy, so get over it. I’ve still got all the important bits and pieces; just my arms and legs are shorter than other peoples’. Well, so what.

I guess in a world made for average people – of which I am not one – you’ve got to have a sense of humour. For me, one of the most frustrating things is not being able to look people in the face. It’s a bit of a joke with some of my mates; they say my world is all butt and pussy, in my face all the time. Fair enough, you have a laugh but at the end of the day I think I’d rather be looking someone in the eye – know what I mean.

Socks is another one. I can’t put them on. Can’t take the buggers off either. I do have this little shoehorn thing but sometimes it can take

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a while. Especially when it’s 4 o’clock in the morning and I’m a little bit tanked up from the local brewery. That’s where your mates come in – my flatmates – they’re pretty good about it. They give me shit from time to time but it’s all good shit. My shoes are the same. I use Velcro on them cause I can’t reach over to do them up that well. I should have a little sign made up. God bless Velcro.

There are things I can do and there are things I can’t do. My mum used to do a lot while she could, help me in the shower and so on, then after a time I had to have carers to help me out. I’m not ashamed of my body, but I was still pretty young then and it took a bit of getting used to. All in all I’m a pretty independent sort – I like to wash my own bits and pieces downstairs – but what I do need help with is scrubbing my back, doing my butt, doing my hair, basically all the bits I can’t get to myself.

Unlike most people I often can’t jump straight out of bed in the mornings. My joints tend to freeze up a bit. I get my carer to send me a text about half an hour before she comes. That’s something we’ve worked out so as to give me a bit of time before she arrives. Probably takes me about 15 to 20 minutes to stretch my hips and stuff – get the blood pumping – so I can get out of bed. Also gives me time to get to the loo and do my daily constitutional so to speak. If I’m lucky I get to read a bit while I’m in there. Then my carer rolls up and it’s into the shower for a scrub up. I find it pretty difficult if I don’t have a shower in the morning, obviously I need the warmth of that water to loosen me up. Be an hour – yeah, about an hour – after I’m out of bed before I’m sitting in the lounge and ready to start the day.

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I was my mother’s first child; born and bred in Christchurch where we lived until I was about 6 years old. It was about then that my parents’ marriage broke down; they just seemed to drift further and further away from each other until something finally snapped and they went their own separate ways. I ended up out in the country with mum. One day I was in a fully supported disabled unit in the city with teacher aides following you around like shadows and the next I was at a big country school in Darfield with a cast of millions. It was certainly a different experience. Helped me grow up a bit I think. Of course everyone stared at me for the first few days, I remember that. For the first wee while I felt quite alone but eventually people got used to the idea that I had a disability and began to realise that I was pretty much the same as them. That I played with GI Joes and video games and all the rest of it, just like they did. I mean at the end of the day it’s people that give you the disability. I usually find that when you’re up front and say look, I’m just the same as you, most people are going respect you for it.

I finished primary school there and went on to Darfield High School. That was a bit different, the old hormones starting to rage and so on, usual for high school years I suppose. I must have been in the fourth form I think, round about 13 or 14 when my mother got sick.

To be honest I can’t even remember when mum first told me, I think I must have blocked it out. She was a smoker and always had sore throats. The doctor just put it down to smoking. Then at some point they said no, maybe it’s a bit more than that and sent her off to a specialist.

Next thing you know she’s got thyroid cancer and that sucked. Being in your teens and losing your mother, I wouldn’t wish that on anybody.

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She went through all the surgery and the chemotherapy and I watched her just get sicker and sicker. That was a pretty traumatic thing. Basically I got to watch this big beautiful healthy person whom I loved turn into a skinny, crawling, wrinkly old woman. It was so hard for her and I hated to watch it but she was adamant that she didn’t want to go into residential care. It was like she knew she didn’t have much time. We had Christmas – at least we got to have Christmas together – and then it must have been a couple of days later, about the 29th I think, anyway I woke up one morning and all my aunties were standing around my bed and telling me it’s okay, it’s okay, your mother’s just passed away. And there she was, just lying... we had a single bed in the lounge… she was just lying there. Gone.

I was never on my own, there were always people coming and going, but in another sort of way I was alone. My mum and me, we really used to get along so well together. The same sense of humour, the way we thought about things, I miss the way we talked about things – about life. She was the one that was always there for me… and then, you know, the funeral directors, they put her in a bag and just carried her off. Like something at the butchers. We had this amazing connection – it was almost like we could read each other’s body language without even having to talk – and it was gone. I don’t know if that’s something I’ll ever have again. Maybe one day, you never know.

I guess I went through a stage where I was sort pissed off with everything. Why did she have to die type of thing, but then at some point you have to move on, get a grip on things. My dad came to me then – he was married with his own wife and kids – and he said,

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come on, you’d better come back to town and live with us. So that’s what happened; country bumpkin back to city slicker.

I have a different sort of connection with my dad, more like a brother. My stepmother was great too. Pretty awesome really, raised three kids of her own and just treated me straight out like everybody else. She expected me to go to school and achieve the grades and stuff whereas mum was probably a bit softer on me with all that. It was good really, focussed my mind on other things, my studies and as you can see around you here, my Star Trek collection.

I have to fess up, I’m a total Star Trek freak. Yeah, yeah, apart from every young guy’s dream – booze and wild women – that would be one of the big things for me. I’ve got all the books and encyclopaedias and stuff. I’ve got this friend who’s made all these models for me, he loves to build them and paint them up. Does a pretty impressive job on them too. He gets a kick out of making them and I get a kick out of looking at them. We’re both so into it we can talk for hours about it.

Really intense conversations – might be about life support systems on the Starship, or warp mechanics or whatever ­– and people are going, what are you talking about, but we know exactly, it’s a real conversation.

Real to us.

One of the things I really like is the whole situation in Star Trek where everyone is equal in a way. There are all these other races intertwined within it, I’m really into that. I find it hard to believe that we’re the only ones out there. One day these things are going to happen and I kinda like the idea of it. It’s something I’d really love to do as a job. I can imagine walking around the deck of these ships and

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sitting in the Captain’s chair – being in command. It’s not that I’m some sort of power hungry bastard, it’s more like they respect your actions enough to take your word for things. I quite like that acting and drama stuff – really getting into the role of a particular character so you’re almost living, breathing, thinking like they would. Yeah, it can be fun to put on a different hat and pretend to be someone else.

Like say if Winston Churchill was right here, right now, what would he think of the way things are. I know it’s a bit sort of odd, but it’s the sort of oddness I enjoy.

Ultimately it’s experiences that make a person and I want to experience everything that life has to offer. Good or bad. Hell, if you don’t do anything, if you don’t ever experience stuff you can’t progress in life. Doing stuff is what makes you who you are.

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I want to travel the world. To really see the world, but I haven’t worked out how I’m going to do it yet. The fact is I’d prefer to go with someone, perhaps meet a partner who might have the same interest in travelling. I don’t think I’d ever go by myself, not when you see what goes on, the sort of things you see on television. Everyone goes “Don’t worry, you’d do fine.” But no, I’d like to have someone to turn to if it all went to shit. Yeah.

Having someone is always good. Like family, that’s important to me – really important. I mean it’s weird because my family are probably people I’d never connect with if it wasn’t for them being family. But I love them. It’s true, they really do a lot for me, they’re just awesome.

And yeah, I suppose I would like to have my own one day. I guess that’s bred into us – perhaps some more than others. Of course considering a family has got obvious risks for me. There’s a 50 percent chance of me passing on my disability so, you know, that’s something I’d have to take into account. Not that I think of it as trouble myself. I mean there’s the surgery I’ve had to have and all that but it’s never phased me. I’ve got a young nephew – actually I’m his godfather – and he means the world to me. I suppose I’d like to think of having my own child one day. Well… dreams eh, we’ll see. Be interesting to have this conversation in 10 or 20 years time and see what’s happened. Whether it’s actually come true.

Probably money starts to matter too. When you start talking about these sorts of things then you’ve got to talk about money as well don’t you. The whole business of being financially secure obviously matters because at the end of the day money does make the world go round.

For someone like me it sort of equalises things – yeah, I suppose that’s

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what it comes down to. Physically there are things I just can’t do but having cash in my hand enables me to do those things – to get people to do those things for me. It gives me power. A way of getting back some of what I lost through having this disability. It’s one of the reasons my work is important to me. It gives me independence. It means if I want somebody to help me with my shopping I can pay them to do it.

Friends can be very generous but there are moments when you can feel a bit self-conscious about it all. To be honest it can get you down a bit at times. Ha, the great void. Times when you feel yourself going down and you think you’re never going to hit the bottom. That’s when you’ve got to go hey, there’s a reason for everything, and then you just get on and pull yourself out of it. But to get back to the point, people’s time is precious and money gives me the ability to put things back on an equal footing. That’s the power of money.

I do strive for independence, that’s something that’s quite important to me. Something that was drummed into me really, all the way from when I was living with my mother right through till now, self-reliance.

It’s something I admire in people. Someone who can stand up and say look, just because I’m different doesn’t mean to say I’m any worse than you are. You take somebody like Tim Barnett; his party politics tend to piss me off – I’m not a Labour Party man at all – but you look at the way he stands up for who he is, not afraid to express his sexuality, that’s quite an impressive feat. That’s not easy and I admire him for that. He’s a leader and that’s something I do respect. People who stand up for who they are – natural leaders – they’re the sort of people I respond to and learn from.

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Actually, no disrespect to my mother, but probably the biggest influence in shaping my life has been my step-mum, Beth. Right from day one, when I first moved in, she made the transition a smooth one.

No jagged edges, just treated me the same as her own kids. She still does. When I look back on it she seemed to have so much trust and faith in me to succeed. Anything I wanted to do she would encourage me to do it – sit down with me and find a way to do it. Always total support. So yeah, if she told me to do something I did it. I never wanted to disappoint her. It got to the point where I just accepted her as my mum – started calling her mum. I think she liked that.

Hell, I was the last kid to move out of home and I still get the treatment; food parcels, phone calls and she’s always coming over for a cup of tea, making sure I’m okay sort of thing. Yeah, she’s a pretty special person to me.

It was a bit of a disappointment to her that I never went on to university. I could’ve gone, I got my university entrance at high school…

I don’t know really, perhaps I was a bit naïve at the time. I mean it was going to cost me money and there was no particular thing I wanted to do there. I wasn’t closing the door completely, but yeah, she was disappointed.

I spent the next 6 months on the benefit doing everything and nothing. In the end it got to the point where I was buying a computer game every week and that was my life. It was probably Beth that got me out of that too. She was always pestering me to get off my arse and do something. Finally I went to an organisation called Workbridge and just said to them, “Look, I need to do a course, I need to do something,

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I’m going nuts!” The next day they had me enrolled in a call centre course and that was really cool. It changed the way I was feeling.

I started to feel like I was important again.

Part of the course we did was to tour round the different call centres and as it happened Telecom was recruiting at the time. Most people applied to get in but I was the only one to get an interview. That was pretty awesome and it was also my biggest challenge. Yeah, yeah, it’s hard to explain but getting into the workforce… in a way I had to overcome my own disability myself, if you see what I mean. I had to be sure about myself, in order to sell myself to other people. That might sound strange but it was a really big thing. It was the biggest thing in my life at the time. Having to sell yourself is not very nice. I had this voice in my head going “Do it right. Don’t muck this up.” I knew if I didn’t get it right it was back to doing nothing. Stuck on the benefit and not going anywhere. Back to being a bum and I didn’t want that.

The first interview sounded like it went okay. As it happens I found out later she was one of the toughest managers at Telecom. Been there for years and years so she’s seen it all I suppose. Anyway the whole thing seemed to go all right. Actually I still think very highly of her because she was a person who could see past a disability, at least she did with me, to the point where she considered me for a job. The upshot was that they were willing to pursue it further but I was going to have to apply through the recruitment agency they used. Turned out they were the ones I had to convince.

I went in there with this whole thing buzzing around in my head, that I really had to do good, and of course I totally ballsed it up.

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I was just too nervous. There was so much hanging on it and I sat there thinking, shit, shit, shit, I’ve completely cocked this up. I knew I had. I went home feeling pretty lousy.

They rang me back on the Saturday morning. No mucking around, she just said, “This is so and so from Telecom,” and then all the usual stuff, how they liked my personality, how I had a get up and go attitude and so on. Then it was, “Unfortunately you haven’t got the skills that we need and you’d have to improve in certain areas to get the sort of job you’re wanting,” and I’m thinking here we go, you know, you can stop now, I’ve heard this all before. She’s going to tell me I haven’t got it. And then out of the blue she says, “I’d like you to start in two weeks.” I wasn’t sure I’d heard her right. I was sitting there a bit blank.

I’m going yeah, thanks, yeah, yeah. I couldn’t believe it. She said, “I’ll get the contract couriered out to you soon. You can fill it in, sign it, and bring it with you when you come. You’ll be fine.”

I really couldn’t believe it. I was yelling out to my parents and they’re like, “What is it, what’s happened?” I said, “I’ve got the job! I’ve got the job!” It was just like the biggest buzz ever. So special. I was so happy I forgot everything she told me. When I was suppose to start, even where I was supposed to go. Hell I was so nervous and excited at the same time that I began to wonder if I’d given her the right address to send the contract to. Eventually it turned up with everything on it I needed to know. That meant a lot to me that did. Yeah, that was one giant step in the right direction.

I love my job. I really do. I think I’d go nuts now without it. It’s such a full on time when I’m there, I just couldn’t contemplate going

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back to doing nothing. Every day I get bombarded with heaps of different problems. I might have to deal with billing problems, sorting out your internet connection, help someone who’s moving from one house to another and thinks it’s a big drama, you name it, I get to sort it out. I’m a bit like a GP, I know a lot about everything but I specialise in nothing. If I can’t help you, I know exactly where to send you.

Sorting it out, making it easy, making people happy, that’s my biggest buzz. It’s like if somebody rings through and they’ve got this huge problem I can’t deal with, I tell them straight out. “Sorry, I can’t help you but I’m going to find out how to and phone you back tomorrow.”

The funny thing is they don’t expect you to. And when you ring them it’s like whoa, and you’ve got it all sorted for them, they love it.

The next thing they’re on the phone and putting a compliment through

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to your manager and that’s just the biggest buzz. It makes you feel like you’re making a difference to someone’s life. I like that.

I’m lucky. I shouldn’t have to say that, but I know in the real world I’ve been lucky. I work for a good company that’s given me a good job and done a lot to accommodate my disability. My work mates really are mates; everyone I have around me has been terrific. I’m just one of the group, if they go to the pub and I don’t go, there’s got to be a bloody good reason. It gets back to what I was talking about before, it’s people that give us disabilities. My mates give me the same respect as anyone else where as others will just see a disability. We’re all physically different from one another, it’s just a matter of degrees. The fact that some people can’t accept that gets me going at times. Hell no one can do everything and for some people certain things are harder than others. Well I’m a big advocate for people who could do with a bit more support.

I’ve got a friend I went to school with and he’s a great guy. We go out a lot together, go to the movies, get on the raz, just have a good time.

But do you know what he does most of the time, sits at home all day in his bedroom. A very small bedroom. He’s got a computer there and all the toys he could want but do you know what his dream is – his dream job – he wants to see people into the movies. He’d really love to work in a movie theatre and take peoples’ tickets. Just be part of the action there. But he’s got cerebral palsy and because he’d be in public view they are never going to accept him for that job. His intellectual ability is not impaired and yet we as a society stop him from doing it. It really hurts me, such a simple job and we can’t even let him do that.

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Even talking about it now gets me angry. Yeah, that totally falls into the fucked off category. Sometimes I think you just need to give people a good slap and say, “Hey, look, listen to me, I’m a real person.”

But at the end of the day society accepts that sort of thing and it’s sad.

No, it’s more than that, it’s pathetic.

You might wonder why I’m getting so excited but it happens all the damn time, it really does. I mean you go into a shop say and it’s very rare that you get treated like everybody else. They are either way over the top, trying to help you too much, or they just ignore you. I was in a computer games place the other day, just a small shop with three staff. A lot of the stuff was on high shelves but I could see two or three things I would have bought – liked to have bought – but not one of the staff approached me. I thought I’ll give this a little test and see what happens. I stayed for nearly an hour and they went up to every other customer except me. In the end I just left and they lost a sale.

Stupid people.

I don’t actually think I’m that dissimilar from anybody else. I know there are people who see me in a wheelchair and think I’m brain dead but that’s their problem. I probably want much the same from life as any other 22 year-old guy does. I do think about the future a bit, that I’d like to be able to retire in comfort and perhaps not all 22 year-olds think about that – who knows, maybe I’m a bit of a capitalist.

When my mother died she left me about $20,000. I guess I could have partied up, brought myself some toys and all of that but I decided I was going to buy a house and that was going to be the

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deposit. I’d always been a bit anal about going renting, paying off someone else’s mortgage when I could just as well pay off my own.

Eventually I started looking at places and do you know, the real estate agent – I couldn’t believe it when I realised – he’d ticked my box straight away. He had me looking at pensioner flats and I’m actually going along with it. God knows what I was thinking. Then I actually saw the house I have now on the Internet. It had an internal garage, easy access bathroom and no real modifications needed in the kitchen, it was great. Apart from the door handles being too high and the fact that it was out of my price range it was perfect. Luckily I had a mortgage broker who was the father of one of my school friends.

I went to see him and I told him I really wanted the house. He just looked at me and said, “Righto, let’s make it happen.” And he did.

We got everything sorted out, secured the loan, and before I knew it I was doing things I never had to do before; setting up the power, the rates, the insurance, everything that comes with owning a house.

To be honest it felt a bit scary at the time. I was suddenly $150,000 in debt. I know a mortgage is a good debt to have but in the middle of the night you can’t help thinking if this all went belly up it would really screw you. It was a pretty big turning point for me. It certainly made me more responsible, more mature. Made me realise how much our actions can affect our lives. Now though, nearly a year later, I have to say it all feels pretty good.

Once I’d settled in the first thing I did was get a flatmate. It was good to have somebody here and it was also a hundred bucks a week off the cost of the mortgage. Next a young woman I went to school

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with moved in and that was all good as well. She’s a good friend and also later on her boyfriend was looking for a place so he’s here now as well. So that was the mortgage taken care of – I was beginning to feel like Donald Trump!

That’s a bit of a goal I have for the future, buying up houses that I could rent. Make myself independent like that. Another idea I have is to do something for other young people with disabilities. I’d like to open a residential home for young people where they can really be young people. Buzz around, get out into the community, do things that keep them young. I hate seeing people being put into places that make them old before they have to be. I reckon I’d be a prime candidate for getting something like that off the ground.

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To be honest I think my life is pretty good at the moment. I’m on a fair wicket at work. I’ve bought my first house, which has been a bit of a milestone for me. In a year or two I’d like to buy another, begin to build things up. I’ve learnt you don’t get anywhere without putting the work in. It’s kinda funny, when I was young I used to dream of having a genie like Aladdin, someone who could grant me any wish I wanted.

If I had that now I guess the thing I’d want is for my mother to be still around. We had this closeness… I guess I’d just like her to have seen me grown up. See what I’m doing for myself.

Actually, when I was 13 I did get a wish which was pretty amazing.

We were driving into town, I was in the front of the car with mum and my brother was in the back and I just said something like, “I wish I could go to Disneyland.” Next thing mum turns around and says, “Don’t get your hopes up too much but you might be going next month.” “What!” I’m going, I couldn’t believe it. It really was like magic. She’d got this letter from the Air New Zealand Koru Care people who took terminally ill kids to Disneyland. It seemed a couple of kids were too sick to go and so they would take someone with a disability. She just said don’t get your hopes up because she still had to find the spending money. They covered everything for you except the spending money, mum had to get that.

She got it somehow. I’m sure dad would have put some in and the school did this thing where they wrote AMERICA on the footpath in big letters and people filled it up with coins. In the end I had a hundred dollars to spend and that was a lot of money then. Ha, that’s where I bought my first Star Trek figure, it was my prize item from the trip.

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It means a lot to me now. I learnt something else on that trip too, that there’s always someone worse off than you are. I was sharing a room there with a little chap – he must have only been about 6 – he was a pretty happy little camper too but when he took his shirt off he’d been really carved up, scars everywhere. He’d had heart surgery about 6 or 7 times. I don’t know if he’s still around but I’d like to see him again if he was.

I’ll tell you something else too. Before I went my dad gave me a silver dollar, one of those big silver coins and I thought that was awesome, thought it was like a million dollars. I was so pleased my dad had given it to me, and then I lost it. I never knew where, it just disappeared. And you know, I never told him. Couldn’t bring myself to tell him. It was like a big secret that I’ve kept until today. Crazy eh.

How else to describe myself, I don’t know. Going to work – providing a service to someone – I get a great satisfaction out of that.

I’m a real people person, that kinda makes me happy. Yeah, it’s a hard question, but I’d probably go crazy without people around me. Love, that’s something else. That’s a tough question. I think love’s important, it’s what we are – who we are – at the end of the day.

I’m single at the moment so I suppose like everyone I’m looking for the right person. Your own million dollar babe, soul-mate or whatever.

I’m actually going to a singles evening in a couple of days with my brother – he won some tickets or something – and I’m sure it will be interesting, bit of a laugh anyway. There’s been the odd woman that comes along and you think you wouldn’t mind knowing her and then

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of course I’m too chicken to ask her out. But hey, I’m only 22 and not ready to rush into anything in a hurry. The thing is, when I think about my parents, it’s like they’re really good friends, which is fine but I’ve got this romantic sort of thing in my head. I’d like things to be fun, spontaneous and… yeah, I suppose romantic is the word. That’s what I’m looking for. Also, I guess I’d like to find someone who had similar interests and obviously Star Trek’s a big one, or at least if they weren’t into it, someone who would put up with me being a complete Star Trekaholic. Anyway, they always say things happen when you least expect them to. What happens, happens. You find someone and you click with them, that’s it. What I’d like most would be a person with a good heart. Someone I could trust.

I learnt a lesson about trust when I was young and it’s stuck with me. I suppose you’d call it a high school love affair. It meant a lot to me at the time but being young and stupid I went off to a camp and got involved with another girl. I didn’t really think about the other person at all. When I came back I basically announced to this person, a girl who had been completely loving towards me that I was in love with someone else. It didn’t go down well. The ripple affect… sort of finding out that things were more than you thought, that was… well, it was a pretty traumatic experience. It really sucked. That’s when I learned how much your actions can affect other people.

Of course the other relationship all came crumbling down which left me feeling pretty empty. It was a pretty good lesson, don’t treat other people badly, it’s a shitty thing to do. I did try to mend the bridge but just made a real mess of it. I didn’t just blow it, I completely

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blew it up. I don’t regret too much stuff in my life but that’s one thing that always sits… well, let’s say if I could go back in a time machine and fix it I would. And if I do eventually get a partner – which I’m sure I will one day down the track – I’d never, ever, do it again. It’s just not worth it. You’re basically mucking with somebody else’s life and I don’t want to be that sort of person. I’m not that sort of person.

Anyway, I guess that’s what it’s all about. At the end of the day it doesn’t matter who you are, what colour you are or what you look like, we’re all human beings getting through life and learning what we can.

You are what you are. You get what you get. You do the best you can.

And that’s it. That’s really all there is.

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The Man With No Arms & Other Stories

Leigh Montford

My brother had quite a reputation in our school, they thought of him as something of a bully. Every so often he would be taken into the headmaster’s office and asked why he was beating up on these kids but he would never say. He never told. It was only a couple of years ago that I asked him myself. We were talking a little about the old days as people do in families and I asked him, “Why,” you know, “why did you do that? You weren’t really like that.” “Because they beat you,” he said, “they kept on bullying you and I didn’t like it, so I beat them back.”

It was true, I got bullied a lot when I was child. I was different in a very obvious way and so the other kids took to me – not in a nice way.

One girl in particular – she was actually an amputee herself with an artificial leg – she was one of the worst I’ve ever met. Every time she saw me she’d have a go. Trip me up or push me over, it was pretty bad.

I used to go all teary-eyed and get quite upset. I guess I was pretty easy to knock over and I’d kind of be lying there on the ground thinking why me? What have I done to you? It’s not something I enjoyed; certainly it wasn’t good for my confidence. One of the things with cerebral palsy is that any upset like that has an effect on your muscles.

Basically they start to do their own thing and go into spasm. When that happens it’s very hard to walk or move or do anything. It really has an impact. And the thing is, even now, when I’m 43 years old, kids in the street still bully me. So nothing has changed. How sad is that. And I would love to change things – I want to help change things – I’d love to go into schools and work with the kids, tell them about my life, educate them about disability, but nobody wants to employ me to do that.

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Partly such behaviour is ignorance, and partly I guess it’s this strange human phenomenon that seems to make us fear difference.

Whether it’s a difference in race, or someone like me who moves and sounds a bit different, it just seems to bring out the worst in a lot of people and all they want to do is give you a hard time. Someone like that – anything that is not part of their own life – they find it hard to understand. It’s pretty frustrating. You just want to take them aside and explain, “Look, you know, I didn’t ask to be like this.”

I have done a bit of voluntary work in this area, the odd high school, Scout groups and so on. I try to be absolutely open with them and I think they appreciate that. They ask questions like “Are you in pain?” to which the answer is no, not really, unless I fall over and hurt myself – which does happen. Am I married, do I have children? Yes, and no. Can doctors make you walk better or talk better? Quite personal questions and I’d rather give them straight honest answers than have them make assumptions. People make too many assumptions.

For instance, quite often, because of my speech impediment, there’s an assumption that I’m intellectually impaired. When I worked as a librarian in Wellington some years ago I would sometimes answer the telephone, “Good morning, library, Leigh speaking. How can I help you?” And a voice on the other end would say, “What’s wrong with you, are you drunk or something?” I would have to take a deep breath and as gently as possible say, “No, I have a disability known as cerebral palsy which has also given me impaired speech. Now, if you make the effort to listen carefully, I will try hard to speak as clearly as I can. So, how may I help you?” Then there’d be a little silence and “Oh, oh, okay, sorry.”

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The thing is it’s true. My speech can sometimes sound like I’m inebriated. The irony is that I don’t drink at all so you can probably understand why it gets to be a bit tedious – another of the little frustrations I have to put up with. To be honest with you, there are times when I’m having a bad day – where maybe I’m finding things difficult to do for some reason – and somebody will stare at you or tease you on the street and all I want to do is scream out “Fuck off you wanker!” I don’t – well, not since my twenties – because it’s just a waste of time. Getting angry with people is hopeless, they just don’t learn if you react like that. You’ve got to be gentle. I might be the first person with a disability they’ve met or had any contact with and I want to leave a good impression. If I don’t, they’re going to go away thinking that woman was a real bitch – that we’re all bitchy with thorns in our

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sides – and you know, the next person with a disability they meet will be tarred with the same brush.

I was born way up north in the little town of Kaikohe. It had its own little hospital in those days and while my mother was in labour they realised I wasn’t in the right position for birthing. They wanted to take an x-ray to see if they could figure out what was happening but the hospital only had one radiologist and he was on holiday so that was the end of that. The next thing I was on my way out, bum first with my hands behind my head. Obviously it was a very difficult birth and my mother was quite severely torn. I was pretty traumatised as well and the doctor’s verdict was I wouldn’t live more than 24 hours. Someone though must have decided to give me a chance and I was rushed off to Auckland hospital where they inserted needles into my brain cavity and took off lots of fluid. Obviously I lived, but had to spend the first three or four weeks of my life in hospital. After that they sent me off home to my first time parents and said, quote, “Bring her up like a normal child,” whatever that was supposed to mean.

When I was very young I had to wear callipers to help shape my legs, that way I could walk a little holding onto my doll’s pushchair.

I spent a lot of time on the floor with my mother doing various therapeutic things like all these tiny beads she used to spread around and encourage me to pick up. The idea was to get my fingers working and help with co-ordination. We spent a lot of time together in those early days but then, when I was about four, my parents marriage broke up. My dad got custody of me and my young brother and my mum

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just totally disappeared. I had no contact whatsoever with her and that was very hard. It changed my life in a considerable way. The whole thing was pretty awful, my dad and myself and my brother all went to live with my grandparents for a short while and then, on the doctors’ recommendation, I got sent to the Wilson Home for Crippled Children.

That’s what they called it then. They thought it would be good for me, give me all the things I needed, like speech therapy and physiotherapy.

They would teach me to do all the little things too, like doing up buttons and tying my shoelaces. My brother went into foster care.

I was still only four years old when my father took me to the Wilson Home. When he left I screamed the place down. It was just awful, some of the people there were much more disabled than I was. I remember these cots on wheels with people who couldn’t talk or communicate at all. Imagine what that must have been like. My whole world, everything as I knew it, just stopped. All the family I had was gone. Everything that was familiar was now different. I was in a situation I didn’t want to be in but at that age you don’t have a hell of a lot of say do you.

One thing it taught me was that institutions were not where I wanted to be. And it’s not where people with disabilities belong. I’ve been a long time campaigner for disability equality and I’m sure that’s where it all started.

Four years I was there and never got to like it. I’m glad places like that no longer exist. A lot of kids never even saw their family. I was lucky, my dad came every Sunday to visit; never missed a day, and every time he left I screamed and screamed again. Poor dad, it can’t have been easy on him either.

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I must say attitudes have turned around somewhat since I was a kid. In those days disabled kids were put into homes and basically they threw away the key. Because of that, people like me weren’t seen in public much at all. And consequently, when you were out there in public view, you were kinda unique. “Look mummy, why is that girl walking funny? Why is she talking funny?”

To be honest not everything at the Home was bad, there were good things that happened there too. When I look back on it I think probably they taught me to be the best I could be. Also I ended up getting quite attached to one of the nurses there, Nurse Maureen, and she to me. Her parents had a farm at Te Awamutu and every now and then she asked my father if she could take me out there. She used to let me collect the eggs. I think I dropped or squashed more than we ever collected. After a time though she left the Home and went to work elsewhere, so I lost her as well. Actually, a lovely thing happened a few years ago, there was an article about me in the Woman’s Weekly and she happened to see it so we managed to get back in touch again, yeah, after all these years. It was fantastic.

Another good thing that happened there was my first bit of schooling, they actually found out I was quite intelligent, so they decided to teach me to type. Writing, they felt, would be too difficult for me and so that’s how I would do my schoolwork, with a typewriter.

But best of all – the very best thing that happened there – was that when I was eight, I got to go home.

By then my father had gone on to his second marriage and so I had to make a big adjustment. I had two new sisters and a brother quite a

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few years older than me, and a new step-mum. I also got my brother back from the foster home. It was kind of strange and a lot to get used to, but you can’t imagine how lovely it was to be out of that place.

About a year later dad got transferred with his work to Hokitika on the West Coast. Actually my grandfather was born on the Coast so while we had to adapt to new surroundings, a new school and so on, we did have roots. We must have been there about a year when something very special happened for me, one of the teachers at school introduced me to poetry. I loved it absolutely. My step-mum bought me an exercise book which I filled with poems. It was not unusual to find me sitting up in bed in the middle of the night with a torch and trying to get down some idea for a poem I’d woken up with. What it was that led to such a love of poetry at that age I don’t know. I just began to read it and

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decided that that was what I wanted to do. Perhaps I had a lot to say and with poetry you can say a hell of a lot in very few words.

Another thing I decided while at Hokitika was that I wanted to write in my own hand. Up until then I’d used the typewriter, but one day I decided I wanted to be like everybody else and write with a pen.

So I did it. I taught myself how to handwrite. It took some perseverance to get to where I could write out my lessons – so they could be read by others – but I got there in the end. I was pretty proud of that. Not a big thing for most people, I know, but for me it was an achievement.

I still used the typewriter at school a lot of the time just because it was quicker but where I could, I used my pen.

By the time I got to college dad had been transferred again back to Wellington. To be honest I found it quite difficult at college because of all the different classes I had to get to. It was pretty tiring struggling up and down all those steps and so on carrying that damn typewriter. My biggest disappointment at college was when it came to exams and qualifications. I did the mock exams for School Certificate; they just put me in an office somewhere banging away with the trusty typewriter for as long as I wanted. But when it came to the real exams they decided that I wasn’t going to sit them, which made me pretty angry. I was thinking ahead you see. I wanted to work, and how was I going to find work if I had nothing on paper, no sort of qualification to show them I was capable. I got sixth form certificate but they didn’t worry about the University Entrance exam. I was angry about that but in those days I still felt powerless.

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I left school with a lot of dreams, the same dreams most people have I imagine. I was an intelligent young woman and like most young people of my age I wanted to find the sort of work that I would enjoy doing. I wanted to earn my own living. I wanted to get out and meet others and to have fun. In short, I just wanted the same as everybody else. Instead of that I was put into a box. Not quite a coffin but it felt a bit like it. I was sent to the Rehabilitation League, which is where people with disabilities were sent in those days.

There were people who were employed at the League permanently and others like myself who were sent there to be assessed. I arrived on the first day and they began by asking me to count out 20 screws, put them into a bag and then seal it. I couldn’t believe it. I thought no way; I’m not an imbecile. I want to work in an office; I want a real job, don’t treat me like some sort of idiot. In my heart I wanted to turn around and walk out of the place there and then, but I didn’t. I did their silly little tests for them and at the end of it all they said, “Great, so are you coming back next week to work here?” That was too much; I just looked at them and said “No way, take a running jump. I’m out of here.”

After that experience I took a deep breath and began to try and find work myself. I thought, you know, I want to work, I’m honest and hard working, this’ll be a breeze. Ha – wrong! First I went to the Labour Department and enrolled with them. Then I went to quite a few employment agencies and enrolled with them as well but they didn’t take me very seriously. In fact quite a few of them turned me away. This was in the 1980s and so there was no legislation to protect me. Then I began to answer wanted ads in the newspaper and initially

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I was quite honest about having a disability. What I got from being honest was a pile of rejection letters that grew higher and higher. I told them that I had a disability but was careful to say it didn’t impair my ability to work. The rejection pile just got higher still. So, okay, after a time I started not to mention my disability and just tell them about what I could do and guess what, I started to get interviews. I went to every interview and every time it was the same, as soon as I came into the room I could see the shock on their face. I’d lost the job before I got half way across the room. The pile went on growing.

One day I had an interview with a large metropolitan newspaper – I won’t say which one – and I was ushered into a room and asked to take a seat. After a time the guy came in and did the interview with me. It went well. He didn’t seem to mind my speech impediment and

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at the end of our discussion he offered me the job; asked me in fact if I could start next Monday. God I was so happy. All this excitement welled up in me and I thanked him very much. Then I stood up and started to walk out and I saw his face change. “Wait! Wait a minute,” he said, “you’re crippled! We can’t have that here. No, no, no, don’t even think of coming in Monday, not ever. We just can’t have people like you working here.”

That truly happened. I couldn’t believe it. I couldn’t… I was devastated. I was so upset, I felt sick to my stomach. I walked out of the office with tears streaming down my face. Somehow I got myself from the city back to Lower Hutt on public transport. I don’t know how, I didn’t see much on the way. The whole thing just knocked my socks off, blew my confidence right out of the water. That was over 20 years ago and I still feel it strongly. I wonder if he even remembers it.

Perhaps we always see ourselves differently from the way others see us. In my mind’s eye I don’t see myself as someone with a disability.

Let me be very clear, in saying that, it’s not about denial. It’s just that if I focused on my disability, if I thought, I can’t pick up that cup because my hands won’t work well enough, then I wouldn’t have been able to achieve what I have in my life. It’s hard enough putting up with the ignorance and shitty attitudes I’ve had to face without doing it to myself. So in my head I switch things around, I sort of push the disability to one side – why think about it – and just get on with my life, do the best I can with what I’ve got.

Getting that first job was not easy, it took something like 18 months and in the end I got it through word of mouth. A guy called Mike

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Gourley who worked at the PSA heard through the grapevine that they wanted to employ a new library assistant. He had a word and after a meeting or two they offered me a six-week trial to see how I’d go.

At the end of that time they found I excelled in the computer work but that the physical tasks, like shelving and putting pockets in books, were difficult for me. Of course I knew I was slow doing those things so naturally I was a little worried. But they were great – and smart enough to think outside the square. They said, “This is what we’re going to do. We want you to do the computer work and we’ll hire a university student for a couple of hours a week to do the physical stuff.” I just about fell off my chair, after all that time and all those rejections I had a job. I walked out of the office and burst into tears. I can’t exactly describe the feeling but this time it was tears of joy. I was so happy.

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While I was there I got my New Zealand Library Studies Certificate.

I graduated in 1991 and thought yippee! Now I’ve got a qualification.

I’ve got training and I’ve got experience, it should be easy now to get a job where I can use it. Yeah – wrong again. It took me another four years.

Eventually I got my next job with the New Zealand Council for Educational Research. It was a fabulous place. They produce wonderful work and I absolutely loved it. I was there for seven years until 2002 when I left to go to Christchurch and marry Chris. I loved my work in Wellington but I wasn’t too worried, I thought that after all these years I wouldn’t have a problem getting a job down here. Yeah, I know, wrong again. I’ve been trying now for three and a half years. I want a job… I want a job. I’ve enrolled with all the usual people, Workbridge,

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Accomplish at CCS and so on, but I’m still waiting. Still trying.

I’ve done a diploma in journalism since being here plus a lot of volunteer work, all to no avail. I have all the skills, all the ability; all I lack is the job. It’s like, you know, you’re brought up in New Zealand, you go to school and then you go and get a job. A job means earning your own money, it means being independent, and that means being part of normal society. It means being given the same chance as everybody else. I know they say two can live as cheaply as one, but I’ve never been able to work that one out. In my experience, two peoples’ income on a benefit is equal to one person’s wage; getting by can sometimes be a little difficult. People with disabilities, like Chris and me, have high needs. For instance, I need special shoes made twice a year, and we go to the doctors more often, which means prescriptions and that costs heaps. There’s no way we can put money away because every cent we get from Work and Income is spent the minute we get it.

Oh well, it’s nearly four years now since I last had a job, so if what they say about history – that history always repeats – is true, I must be due for a job any day now. Forever the optimist.

When I was chairperson of the Disabled Persons Association in Wellington I was sometimes asked how you define disability. I suppose the official definition – in a nutshell – would be any impairment that makes the normal tasks in life difficult. That’s the one I would use, but it’s really up to each individual. I mean with my husband Chris, he’d say, “No, I’m not disabled.” He can’t see, but he’s adjusted to that and now he does pretty well everything. You could watch him and not know

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he was blind. Many people who meet him for the first time don’t realise he is blind. He doesn’t walk around with his hands out in front of him feeling for walls or bang into anything, he’s just incredibly confident.

When we’re together on the street – if I’m in my wheelchair and Chris is pushing me and we’ve got his guide dog walking with us – people assume that the dog has something to do with me, they just don’t click that Chris hasn’t got sight.

Being with Chris, having time with him, that’s incredibly important to me. Sure I’d like a job, like to have some money so that that part of our life wasn’t such a worry, but people are the most important thing. I met Chris at a DPA meeting in Wellington back in ‘98 and we connected somehow. Just seemed to click the way you do sometimes, I can’t explain why. I know we like similar things.

I know he makes me laugh. I know I love him and that he makes me happy. That’s pretty damn good if you ask me.

It’s not always been like that. The first fellow I fell in love with turned out to be gay. So that didn’t work. Then I lived for a while with a guy who also had a disability. That didn’t work either. I had a pregnancy when I was 26 and miscarried 11 weeks later. It was the hardest thing I’ve ever had to deal with. He seemed to deny his own grief, he certainly couldn’t handle mine, and that caused a lot of friction between us. Basically everything turned to shit and the relationship collapsed. Then three years later I got lucky and met Chris.

It would be less than honest to say I haven’t found relationships a difficult part of my life. It seems most men are not too interested in women with disabilities. I’ve had lots of men friends but not much that

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ever went beyond friendship. It gets to be pretty obvious that disability is a big factor when it comes to relationships. People’s assumptions… actually I don’t know, it’s hard to say why. Perhaps a lot of men are scared of what their mates will think or their family will say, hell maybe they think you’ve got bits missing, God knows. Let me assure you, we’re just like everyone else, got the same needs, same wants, same desires absolutely.

I suppose for all those reasons – when I first met Chris – it was kind of nerve-wracking really. The usual things, what’s his family going to think? What’s my family going to think? Are my friends going to like him, and his me? In the end of course it doesn’t matter what other people think, it’s about how we are together. And as it turned out we got lucky, we work together really well.

There are a lot of lonely people out there and they all need somebody.

Everybody needs somebody and that’s what I’d wish for others, that they find the sort of happiness that Chris and I have.

When I was in the Wilson Home we would have a church meeting every Friday. We’d sing hymns and have these little religious readings and say grace before meals and so on but my family never followed any of that. They’re not religious and I never pursed it after my time there.

Never worked up any interest. I suppose I feel that we have a soul, and yes, we have a purpose, but I’m not sure about any sort of fabulous God out there who would allow all the bad things we see happening, or people to be born with disabilities like mine. I can’t see that. Buddhism is a philosophy I find more interesting. The idea of experience and

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learning from that experience carries something that appeals to me.

Ultimately, the most important thing is the way we are with each other.

Chris, my family, my friends, yeah, that’s what really counts.

There are still times when people hear my speech and automatically think that I’m not all there. That there’s something missing. I find that pretty frustrating, and sometimes I don’t get the opportunity to put their assumptions right. But here’s the thing, because I’ve been the victim of assumptions I do my damnedest not to make assumptions about anybody else. I try always to accept people for who they are, and yeah, I suppose that’s what I’d ask for myself also. That maybe next time you see me in the street, or hear my voice, or I ask you for a job, you’ll try to see a bit further than the disability. See a person who has all the same hopes and dreams for herself and her family that you do.

Maybe just treat me the same as anybody else. That would be good.

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211 Leigh Montford

The Man With No Arms & Other Stories

Pip O’Connell

Dad died in September. A few months later, just before Christmas, I found out I was pregnant and what went through my head was that dad would’ve been rapt. My father had this thing about family, about boys – having a boy first was important to him. I don’t know whether that’s a male thing or just a dad thing but he thought it important. If you had a boy first, that meant a strong family – that was his thinking.

Mum and dad were hands-on parents, very involved with all of us. I was born third eldest in what became a big family. By the time the youngest arrived the oldest had left home but there was always a big number around the table. Mealtime was family time in our house.

Television off and no phone calls was the rule. Mealtime was discussion time, a time for dad to catch up on the day and for all of us to catch up on family stuff. Dad was a builder, mum was the homemaker and we attended the local school so there was always a lot going on. My parents didn’t sit and watch the world go by, they were involved. The school community, the Oamaru community as a whole, boards, working bees, sport, you name it they were there.

Coming from a Catholic family with lots of brothers and sisters there was always plenty going on. You were never alone. We had a very full and happy childhood, absolutely. Catholic schools of course; I went to St Joseph’s Primary – run by the nuns then – which was great.

In form two I was made head girl. Later I went on to St Thomas’s Girls’ High School at a time when it merged with St Kevin’s College and became co-ed. It was run by Christian brothers and they weren’t too happy about the merger at all. The whole thing was a bit challenging

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for me as well. I was what you might call a bit of a social interactor, I liked to organise everybody. Yeah, I was a bit black and white, all very practical but a bit lazy around the education side of it. I was – I still am – into social issues, justice, equality and so on, that’s where I sort of fit really.

Mum and dad were both very clear about social issues, about fairness and justice for all. It was a strong family trait that was instilled in us from a young age. What was right, what was wrong and looking after the underdog were big things in our family. Often at Christmas or other times of celebration those less fortunate would become part of our extended family. Mum and dad always had friends that didn’t fit in to what passed for normal society in our part of the world. People that were on their own, maybe they had no one in their lives or perhaps they were just seen as odd sort of people. They weren’t really that odd at all but people have always liked putting other people into one box or another haven’t they. Especially in small towns; if you’re not married when others think you should be, or you’re limited financially, you can quickly be seen as different. Somehow it just became part of our family’s natural way of life. There were always different people around our table celebrating someone’s birthday or a religious occasion or whatever.

As we grew up the dining room table became a huge place of discussion. It was something my parents encouraged when we got to the age of socialising ourselves. Friends were encouraged to come around, it was a place we could go, bring a few bottles of beer or a bottle of wine and sit down with mum and dad. They were very much a part of the talk and I guess they liked the idea that all this discussion

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took place in a healthy environment. It was great; everything you could think of got discussed. Sex, politics, religion, the usual powder keg and sometimes, as you can imagine, it all got very heated indeed.

Also around that time different sorts of people began to enter our lives and that threw up all sorts of new challenges as well. My mother was fine with most things but ironically my father, who was a kind and decent man, had issues with things like homosexuality and also racism. The racism I think came from his own upbringing, in particular his father. My grandad was all ‘white is white’ and that was it, the way he saw the world. His problem with homosexuality probably had more to do with religion. But yeah, he struggled with both these things and as we got older we challenged him about this, about why he thought and felt the way he did. At times it got quite heated, but I think us standing our ground as we did sent some clear messages to dad about his own thinking.

All this talk came to a head when my brother, who’d been living in Wellington, met a young Maori woman and wanted to bring her down to visit the family. “Over my dead body will she come and stay here,” was dad’s immediate reaction. And so straight away we were on to him. “What the heck are you on about dad.” In the end, the long and the short of it was that if dad didn’t allow her to come then my brother wouldn’t be coming either. So come she did. You could tell dad was really nervous and we had him all tuned him up, “You just behave yourself, you haven’t even meet this woman.” We were really chaffing him. Anyway she arrived with my brother and a couple of friends – they were all at training college together – and dad, you could see

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the tension in his whole body when he said hello to them. But then, a couple of drinks later – which was also dad at the time – he started to relax and conversation flowed like normal. All of a sudden you could see him thinking, you know, what’s the big deal. When they produced a guitar a few hours later dad’s was the first voice you heard.

I’ve never forgotten that time, I felt quite emotional about dad standing up –admittedly after a couple of drinks – and thanking these girls for joining with our family. And we often – my sisters and I – we often talk about that night. It was a really clear time of breaking down barriers for our dad. I know the girls who came were really aware of coming into this white, middle class home and that dad was a bit funny about it but they were terrific, they really dealt with it so well and because of that day, that experience, dad changed. His views on other races, which had come from his own father, changed completely and I was proud of him for that.

The gay thing was much the same, a bit of a rerun really. The same brother, Greg, flatted with a couple of guys who were gay, and dad was again in an “Over my dead body,” sort of state. And then Greg arrives with his flatmate and wearing an earring and of course dad starts thinking maybe this is his boyfriend. It very clearly wasn’t, but by this time dad is beside himself – murderous. And this friend of Greg’s is also very, very feminine, which I think really threw dad. Of course the same thing happens, a weekend at home, a lot of talk, and the next thing you know everything is fine. Blair came to visit us often after that.

The fact that his children were going out into the world and meeting all sorts of people played a part in dad re-thinking his own way of life.

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The fact that he was capable of such reflection made him even more special to me.

When he was 53 dad was diagnosed with rheumatoid arthritis, a week later they said it was cancer. Two weeks later they said he only had two years to live. Every week after that they seemed to change their minds, two years became one and then suddenly it was only six months. In reality it was 12 weeks, he died in 12 weeks.

That was a very hard time. I’m lucky I had a great boss – I just couldn’t concentrate on work at all – I’d go to work in the morning, be there a couple of hours during which I’d be on the phone to the family half a dozen times. It was hopeless, I couldn’t sit still, two hours and I’d be saying to the boss, sorry, but I’m out of here. I need to go and see dad.

Dad, of course, was adamant that he was just a bit unwell; he was going to be okay. That was in the early stages. He still had all his faculties but clearly the deterioration was setting in. When the cancer was first diagnosed we were all summoned. I had an awesome relationship with my father and there was a bit of talk, as there is in most families, about, you know, who’s the favourite and so on – I don’t think anybody was his favourite – but at that point, when we were told and it came time to see him, I needed to do it on my own. I told mum and she said it was okay, so, when the family had all left the hospital, I went in on my own.

It was just something I needed to do. When I walked into that room it was just… we couldn’t really speak. There was nothing to say really.

I sat there… I was just beside myself, tears all over and we… dad… dad just said, “It’s okay. It’ll be okay.”

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The joy, I suppose, was that we had each other. We had our family close. And there was a period when dad came home for about four weeks. We decorated mum and dad’s bedroom, made it into a sort of open room for friends and family to spend time. There was music and there was a Bible and rosary beads – dad was really what you’d call a pragmatic Catholic – and he made sure we had the doors open all the time so he could hear us talking and laughing in other parts of the house. He loved his family and wanted to be as much a part of all that for as long as he could. At the last he was in Burwood, in the hospice there. We had discussed with him what he wanted at his funeral, the readings he wanted and so on. He was clear about that.

He’d even asked us to start singing hymns a couple of weeks before, “You girls need practise,” he’d say. He was quite… well, I suppose he knew his time was coming. We were all trying to keep brave faces, trying to be brave, but as soon as we left the room we’d be in tears.

Watching my mother suffer was the hardest. Losing a husband after nearly 30 years, raising all those children, mum couldn’t go anywhere.

He needed to see her all the time.

Mum’s faith is deep, and I think quite different to dad’s. His was what you might call a Sunday faith but mum reads the Bible and she’s focused every day on God. It plays a massive part in her life. God fills so much of her everyday needs and that’s tremendous, it really is. She’s so important to us all. Family is more to me than it is to some people.

I’m not saying we’re not without our differences – I’m sure all families have those moments – but they’re my best friends and a huge part of my life. Getting to know someone can take a long time. My family are

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all givens. Sure we’ve all gone our own particular ways, followed our own paths, but the core values of respecting each other, valuing life, giving not taking, are there and when it comes to the crunch we are there for each other. I love them all, unconditionally.

Dad – both my parents – gave me certain gifts; they taught me the importance of speaking my mind, that everybody has a value, that there is no better than, no less than. That respect for all is important.

It’s something I do my best to pass on.

I always dreamt that dad would make the best granddad ever but he never got to meet my children. In a way he’s still here; there are times when I’m out in the vege garden say, and it makes me think of him.

I stand there among the rows of peas and carrots and suddenly I’m back in that world. Dad cracking a beer with friends and the talk that would go on… the toasties we used to have for Sunday tea, even now the kids call them granddad Morris’s toasties, but they never met him. To them he is a dream, but not to me. I miss him… I miss him… he’s still a very strong person in my life.

I wasn’t such a big a hit with boys. I mean I liked boys, but they didn’t seem to like me that much. I was a bit of tomboy I guess, no two ways about that. So, boyfriends weren’t my strongpoint.

Gradually of course friends started to get engaged and married and it was sort of like, well, that’s what I should be thinking of doing. That’s the way it is – what you do. I’d been out with a few boys when I was living up in Christchurch and then I went back to Oamaru and met Graeme. I thought he was lovely. Yeah, I thought he was cool. He was

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off to Australia and said, “Why don’t you come?” And I thought great, you know, it’s time I got out of Oamaru, saw the world. I was 21 years old and everybody I knew was doing something, going overseas or going to varsity. This seemed like the chance for me to do something too.

So I went. And later we came back and got married, which was also what other people were doing and perhaps I thought I should as well.

I wasn’t particularly young when we married. Okay 25 is not that old, but what I mean is, I wasn’t 18. I wasn’t naïve. Back then it seemed it was just what happened. You go out with a guy for a while and well, marriage was the next step. I think now it was another sort of dream.

The dream of being mum and dad but with less kids.

I remember my father saying on the day of the wedding, “Is this what you really want to do?” It was all a bit surreal, I’m thinking, this is what you read in books, what you see in the movies. I mean God, I wasn’t going to cancel it at that point. And I still say it’s a decision I went into knowing what I knew. I walked up that aisle, made that commitment, and whether I regret it now or not, at the time I was totally clear about what I was doing. I made the commitment. It was a choice I made. Now time has gone by and we’re no longer together.

We separated three years ago and that was a choice also.

The first Christmas without my father was not a good one. The night before, Christmas Eve, just a few days after I’d learned I was pregnant, I miscarried. I will just say it was a sad time, and leave it there.

Early in the New Year I became pregnant again and nine months later we had a son. The pregnancy went fine. I had all the check ups,

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the scans, the whole nine yards, no drama. No drama at all. Right at the end they decided to do a caesarean section because the baby was the wrong way around but nothing unusual in that. We went into the hospital at seven in the morning, all the family of course were on tender hooks, waiting by the phone and we had the usual instructions to ring immediately. As it happened there were three emergency caesareans that morning so we had to wait. But that was fine, no panic, I was quite happy.

Eventually we got into the theatre and every thing was good, the delivery all went really well. I had a great team of nurses with me all morning, very supportive and the medical team there were no different.

They were brilliant. I must have left the theatre about two, two thirty, with my beautiful little boy all wrapped up beside me. I was pretty groggy but you know, just took one look at him and instant love.

I said, “We’re going to call him Ben.” We’d had that in mind and it was just perfect. Graeme went off then to ring all the family who’d been waiting patiently for hours and while he was gone a nurse came into the room. She must have started on the afternoon shift at three o’clock. She introduced herself – said she’d be our nurse for the rest of the evening – and then off she went, saying if there was anything I needed I should just ring the bell. As she went to go through the door she stopped and turned to me and said, “Oh, by the way, have they told you?” I was lying by myself in the bed – Ben was in the cot beside me – and Graeme was still ringing various members of the family to give them the good news. “Told me what?” I said. “Oh,” she said, “They think your son has Down’s syndrome.”

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“You’re joking. You’re bloody joking!” It just tumbled out. I suppose it was a typical reaction from me but I was shocked. My head went from one space to another in a split second. “Anyway,” she said, “I won’t say anymore about it, the doctors will be in at five, they’ll explain it all to you.”

I was still sore; my stomach still felt like it was up under my chin and there were tubes going everywhere. I had no real idea of what Down’s syndrome meant. What it was. I mean, I knew a bit, knew the old description, a Mongol kid. I knew there was a stigma attached to this but it was pretty hard to think in a straight line. My mind was fizzing away all over the place; will he talk, will he walk, will he still be living with me when I’m 80 years old? Will I be able to breast-feed him and if I can’t, what will that mean? For 15 minutes or so I was on my own in a state of… of what, it was a sort of unreality. There were tears, I could feel them on my face, and this huge flurry of things going through my mind but at no stage, not ever, did I think of swapping him, wanting someone else. He was born out of love and his life was as precious to me as any other.

I have this strong memory of turning over and reaching for Ben’s cot, of taking a really good look at him. I went into this – not grief, not then – but more like, well, if he’s bloody got it he’s still beautiful and he’s still ours. That was it. It was unconditional that he was on board.

Within my own heart and thinking, that was it. I knew inside there was a job ahead but we would worry about what his needs were and how we’d get to them later. In the meantime he needs what any child does, to be part of a family and most of all to be loved and nurtured by his parents.

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All of this happened in just a few minutes then Graeme walked back into the room with a big smile on his face and immediately he was telling me about who he’d rung – mother and son doing just great etc. – and how excited everyone was. It took me a moment to say, “Graeme…

Graeme, there’s actually a bit of a problem.” “What? What? What are you talking about,” half of him was still back on the telephone. Then I told him what the nurse had said.

“Bullshit! Like hell he has. That’s bullshit!” He went straight over to Ben’s bassinette and looked at him. “No… no, he hasn’t. He hasn’t.”

He was really angry and wanted to know the name of the nurse who’d told me. He was adamant she was wrong and couldn’t wait to see the specialists who were coming to speak to us at five.

When they finally arrived they undressed Ben and took us carefully through all the features one might expect in a Down’s syndrome baby.

Out of the ten features they outlined, Ben had eight or nine, so, that was that. They were clear it was not genetic, that it was the luck of the draw; still, it wasn’t an easy thing to get your head around. Anyway, he was here and he was ours and we’d just have to cope with it. I said to Graeme, “We need to be strong. We need to celebrate.” There’d been a wetting of the head planned that night and I wanted it to go ahead.

I wanted there to be a celebration but in the end it seems to have turned to custard. Apparently one or two of the people there asked if we were going to keep him. Now it was my turn to get angry. “Who bloody said that? This is the late twentieth century, that’s bloody ridiculous.”

I was really wild.

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The whole business of telling everybody – starting with family who’d all began to arrive – was not easy. In fact it was pretty damn fraught with a lot of tension and anxiety. One or two lost it all together.

Some who’d shared our hopes and dreams felt we were robbed. People reacted in a lot of different ways, some of which I found hard to cope with. And later on many people spoke to me about their reactions, the difficulty of knowing what to say in that moment. I think mostly people decided that if I was crying they would cry. But if I was strong, they would be strong and we’d talk later. That’s how it sort of shaped up in the days before we left the hospital. I don’t blame anybody for not knowing what to say. To be honest, if I’d been in their place, I don’t know what I would have said at the time either.

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Perhaps this proves the value of age and experience because at one point the doors opened and my grandmother – whom I love dearly – was standing there. Ben’s great grandmother. She walked in and she said, “Well, where is he?” I said “Ben’s over there.” “Well, someone pass him to me,” she says, settling herself down. Someone – I think it was Graeme – passed him over and she looked and looked at him, I could see her thinking, trying to work out where the disability was in all this. Then finally she turned around and looked straight to me, “Well Philippa,” she said quietly, “we haven’t had one of these in the family before, but I think he’s just beautiful.” This was from a matriarch of many, Ben was like her thirty-ninth great grandchild, and for me that was a win. It was what I needed to hear her say. He was mine regardless but it was important to me that she embraced this child – my son – and so yeah, it was a win.

You know, in some ways we’ve moved mountains around the issues of disability and in some ways we haven’t even gotten out of the backdoor. If you’re a parent of a disabled child you’re on a journey forever. Anytime you’re in the public arena you seem to be fair game.

Everywhere you look, people are looking at you and your child. People, it seems, will stare forever. Twenty, thirty, forty years from now it will be happening still. Children are getting better, to some extent they’re alongside it in school and when that’s the case they have a better attitude than many adults. Some of our adults need a bloody good slap.

You can read their mind in their eyes. A sort of distaste, maybe a kind of fear, ‘these children don’t belong, they shouldn’t be out among us.’

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I know that’s a generalisation but believe me, we still have a long way to go.

Ben has what you’d call a visual disability; it’s immediately obvious when you meet him. After 11 years I’m somewhat hardened to it. I know it’s never going to go away. I’ve put some effort into the tools I need to deal with our life but when he was younger I found it a real issue.

A child is a child first. They have a name. They belong to a family; a family no different to any other. And if you find yourself confounded, if it happens that you are confused or unsure, the way forward is simple, ask me. “What is your child’s name, what is their disability?” To me that feels healthy, not only am I pleased you’re taking the time to ask, I’m also able to give you the right information. That’s what I think of as win, win. Knowledge you can then spread among your own family and friends. I call that community education.

Like most people of that time, when I left hospital it was suggested that I join a Plunket group in order to have contact with others and learn about the sort of things all young mothers need to know. At the time, the group in my area was situated in quite a wealthy part of town, very white, very middle class and I was rather paranoid about it all. It was the sort of area where I felt I needed to pull up outside in a Rolls Royce sort of thing. Now that was stupid, that was silly, they were a lovely bunch of mothers. They embraced me and they embraced Ben, it was as simple as that. At no stage did they ever isolate me.

If it happened, it wasn’t them that put me there. It was a time though that certainly had its moments. Being with lots of other babies, all of us

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out in the park say, people all over, and I’d be absolutely beside myself worrying they’d pick Ben out. As a baby of course it was pretty hard to see any difference. I look back at the photos now and see that, but it’s also certain that as he got older the Down’s syndrome became more obvious. Those first few months he was pretty much the same as those around him but then the milestones start to kick in. Suddenly you find the rest of the group are learning some sort of bathing technique and you’re somewhere else entirely doing early intervention physio and speech training.

I’m pleased that part is over; we’ve come a long way since those days.

As a young mother you’re all emotions, desperately trying to get the mothering thing right and on top of all that you have to get your head around the disability thing as well. You wanted a baby, a child of your

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own, but suddenly you’ve got all these other people in your life, you’re being hooked into all these health and funding and early intervention systems, your home is full of people to whom you are having to tell your story again and again. It feels like… like what… open slather are the words that come to mind.

There’s something else too; the same as all parents, those with disabled kids experience frustration and anger, sadness and joy, but not infrequently they experience something else as well. Sometimes it’s whispers, sometimes you’ll hear it out loud. Words like, “It can’t be as bad as all that.” Or stories about parents who are being far too dramatic, who want too much, who make a lot of noise about how difficult it all is. Well that bloody grates with me. My answer to such uninformed nonsense is simple – try it. Come and live in my life for a week – one week – then open your mouth and give me your comment.

It’s not that Ben’s a bad kid, he’s not, he’s a great kid, he just requires one hell of a lot of energy. That means there are times when you can get run down – it’s something you try to watch out for but it happens.

Things build up and no one else is going to solve the problem for you so it’s a waste of time going down that track. No point to it at all.

The only thing to do is go to bed and say, “That was a shit day.

Tomorrow’s another day.” Then you get up and there’s Milo spilt all over the bench and spaghetti all over the carpet. All right, you tell yourself to calm down, “Just clean it up and lets get on with it. Lets get through the day and tomorrow will be better.” And sometimes it is.

A most important piece of advice to any young mum is to find yourself a good, good friend. It could be family or a friend in similar

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circumstance – I have a bit of both – but it must be someone you can trust and confide in. My mother is one of my best confidantes, we are able to communicate on a level that I wouldn’t – couldn’t – go to with many people and that’s a very powerful thing. I have a few women friends as well; we sometimes call ourselves the mad mothers, and together, we are a safe place to go. A place where each of us can honestly say what we feel and I mean really chew the fat. I’m not talking about a large coffee group or anything like that, just two or three woman who will listen while I tell them I’ve had a gutsful. Women whose friendship will help me get up the next day and get on with it, as we all have to do. A place where anyone of us can put our whole heart on the table without the risk of hearing, “She’s getting all a bit dramatic.” This is a place where we can laugh and giggle and cry and still feel safe. I’m not saying that there aren’t a lot of very supportive people out there, people who have great empathy, people who are incredibly caring, people willing to go the whole nine yards and that’s fantastic, that’s really brilliant, but honestly, unless you are one of us, you can’t imagine the need we have for such a place.

Human beings are social animals and most of us have some sort of need to co-exist, to share our experiences with others. In that respect I don’t suppose I’m different to anyone else and fantasies aside, it would be a lie to say I didn’t have a dream to meet someone – someone I could share a life with. The thing is however, although I have always had male friends, that’s exactly what they’ve remained – friends. I’m not someone who could have an intimate relationship for it to go nowhere.

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That’s a bit about upbringing and also a bit about my own belief. And of course the other difficulty is I come as a package. My two boys are part of me, unconditional. So while someone might build a relationship with me – might think I’m great – the question remains, how do they feel about the children. It’s more than that too, because I have to ask myself how they perceive Ben’s disability. There’s a difference between saying, “I wouldn’t have a problem with disability,” and actually living with it, supporting it, being able to live positively with it.

There’s something else as well that sort of nags at me, would it be fair to involve myself with a man, create a relationship with somebody when I come with such an add-on; an add-on that requires so much energy and commitment. You start thinking to yourself, you know, if it wasn’t me, he might meet a woman without all this baggage. It’s such a big ask when you really look at it. So, at the same time as you might wish for it, you go through some real soul searching. Perhaps get a bit hard on yourself. From time to time I find myself saying stuff it, I’m not even going to think about a man in my life. My role is to be all I can for the boys and maybe that’s it. That’s my place on earth.

What will never change is that my own life is inextricably bound up with my children. And with Ben – in a very particular way – that is something that will go on for the rest of my life. He is now 11 years old and as he gets older things may well become more complicated – more demands on my attention and energy rather than less.

He’s becoming bigger physically and he learns from what he sees.

You get a whole bunch of boys his age up to no good in the playground and it’s, “Excellent, I’ll have a crack at that.” And home it comes.

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He can use the F word like a trooper, has become an expert at answering back and of course everyone’s an idiot. It’s a good thing that he’s got a very sparky eight-year-old brother to give him a run for his money.

Having said all that, in many ways, Ben is pretty well adjusted.

When you actually know him, you understand how well he has done but out in public you sometimes find another perception. “What the hell is that kid doing? He’s not a child, he’s 11 years old, why is he acting like that?” And you are constantly trying to manage social interactions. One of the hardest – one of the things you wish for all children – is friendship. That they have others who will see them as a friend, that has huge implications for kids like Ben. Repetition is another big thing. The need for repetitive learning is something of a Down’s syndrome trait. Having to say things over and over and over again. How many times does this child have to be told until he finally gets it? It’s incredibly tiring; you can feel like a rubber band stretched to the limit. It’s the sort of stuff that can do your head in. That and the sort of attention you need to constantly apply. Ben’s up at six every morning, something he’s been doing for the last eight years, which means of course you’re awake at five minutes to and immediately aware of where he is and what he doing. Two days ago I got a phone call just before eight in the morning, Ben’s at the neighbours. Well… how the hell did that happen? It’s 24/7 and no let up.

The thing is you can’t think about it too much. I’ve been on my own for sometime now and that’s one thing I’ve learnt, don’t contemplate the what ifs. And watch out for those little fantasies when the day’s been a cow and you’ve had a gutsful. The tea’s on the table, the kids

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are showered, your knight in shining armour walks through the door and you say, “I’m out of here Fred! I’m not coming back till they’re in bed and asleep.” And off you go to walk in the last of the sun along that beautiful beach where the noise stops and everything is peaceful. It’s a nice dream but not one you can allow yourself to have.

Hell you’d drive yourself nuts. Those possibilities don’t exist when you’re on your own. Actually that’s not quite true, I can do it to some extent, with careful planning. If I feel the need I have a job that means I can plan – I can pay – to get a babysitter in. Others like me, those on a benefit or whatever, perhaps don’t have that option.

The joy in my life is going to work. I love adult interaction, I’m passionate about what I do and it gives me the opportunity to get my

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head around what’s going on in the larger world. To some, work is not the enjoyable experience it is to me, but I guess when you’ve been without it, you learn to appreciate what it gives you.

When I split with my husband, a girlfriend – a very kind girl friend – lent me the money to find a place. I had no way of knowing when or how I could pay her back but she gave it to me anyway. Once I had a place I still had to go and ask for Government assistance. Believe me, lining up for the Domestic Purposes Benefit is not something that you’d wish to experience. Throw in a couple of children – one with a disability – and a case manager that says, “If it’s so hard why don’t you go back to your husband?” and you start to feel a bit desperate. Every third week I was going down and asking for a special benefit because I couldn’t make ends meet. After rent, food and power I might have something like $15.00 left at the end of each week. You get pretty creative with what you do. “No, I know it’s hot but we’re not going to the pool” – four dollars fifty cents – “we’re going to the park” – free.

I had never been in a situation like that before. I felt… I felt totally worthless. I didn’t come from a family with money but there was always food on the table and the things we needed were always there – enough for us to feel we were cared about. Now I found myself trying to explain to my own children why life was not like that for them. Don’t get me wrong, I really appreciated what I was being given – what was being done for us – the people who helped me, I just hated being in the situation. It was a very bad time.

A few months later something good happened. The woman who is now my boss at IHC rang me; she said she’d heard of me through my

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involvement as a parent on various committees and so on. Then out of the blue she says, “We have a vacancy for a national position with IHC and I wondered if you’d be interested in being an applicant.” It was quite exciting for me to be asked like that, totally unexpected, but really I thought she was joking. Why is she asking me? That’s what was going through my mind. The next day I got the job description and I thought bloody hell, this is a joke, there’s no way I could do this. I was totally lacking in confidence, but somewhere in the back of my mind I also knew this was a great opportunity. In the end I took it to show a couple of friends, people who understood such things and immediately they both said you can do this. You would be perfect for this job. Just break it down into small bits and you’ll see you can easily do this.

I applied, but at the same time I was still telling myself it was way out of my league. Part of the process was that I had to write a report to the Government, outlining what I thought about certain key issues around disability. I can see myself now, sitting there late one night thinking I can’t do this – then I thought about my kids asleep in bed and I knew I had to do it. In the end I simply spoke from the heart, wrote down what I honestly felt, and a few days later I got a letter telling me I had an interview in two days time. It also said I was to give a presentation.

God I couldn’t believe it. A presentation, how the hell was I going to do this? I was gob-smacked and what’s more I was also completely computer illiterate. At least I had enough foresight to take myself down to the library and they helped me download what I needed. Then I went over to mum’s place and wrote it all up after which she made

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me get up and speak and speak and speak. Wouldn’t let me stop and all the time I’m doing this she’s going, “Slow down, slow down. Don’t talk so fast,” on and on she goes until I’m totally pee’d off with her.

The next day I get myself dressed up, go in for the interview and then do the presentation, all of which felt pretty intense never having been in that sort of situation before. I mean this was a national role in the organisation and I knew they were interviewing a number of other people, so I wasn’t holding my breath. I knew I didn’t have a hope in hell but I was glad I’d done it. I felt I’d acquitted myself pretty well and if nothing else it really helped with my self-esteem.

A couple of days later the phone goes about eight in the morning and it’s IHC. The kids are running around making heaps of noise and I finally had to go up to the end bedroom to hear properly. “Just ringing to get your impressions about the interview, how you felt it went and so on,” she said. I confessed to being really nervous but told her I thought it had gone much better than I’d expected. Then she asked how I thought the presentation had gone. And I’m thinking, okay, you know, I’m not much into this self-analysis sort of thing. I did think it decent of them to ring and discuss it rather than just not hearing from them again, or some brief message on the answer phone, “Sorry your application has been unsuccessful.” In the end I just said, “Well, you know, I’ve never done any public speaking before so it probably wasn’t what you’d be used to. I just did the best I could” “Actually,” she said, “we thought you were pretty good. So good in fact that we want to offer you the job.”

“Bloody hell!” My unusual reaction to big surprises. The thing was I just couldn’t believe it. It was such a huge thing to be happening for me.

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When you’ve been down and then something like this happens, lifts you up out of where you’ve been, it’s very special. It moves your life to a different place. One, I was being given a challenging job in an organisation that works in an area I have a total passion for. Two, I was going to have a company car – a week before I would have worked for nothing for a company car – and three, it came with a salary I had never even dreamt of. What was being offered to me was not just a job; it was the chance to make my life anew. Not everyone will understand what I mean by that, but some will.

There are people who’ve not yet been as lucky as I’ve been. People who are on benefits and so on and when I think of them and my own time in that situation, it makes me think about how easily anyone can find themselves in a place they don’t want to be.

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As I said, my day with the kids starts at six but by nine fifteen I’m working in a job where I mix with all sorts of really interesting and wonderful people and that fills an important space in my soul.

Then at ten to three I put my mother’s hat back on and start thinking totally about the kids again. We go hard at it till around eight most nights. I’m not a night owl and I’m not much of a TV watcher either.

By the time the kids are in bed I’m in need of some quiet time myself.

The CD goes on, the book comes out and you just try to relax a little.

There may be a little project or two that needs attention but it’s also important that you get the right amount of sleep, that you eat properly and so on because when you’re on your own you’re responsible and there aren’t a lot of other options.

There’s a danger too, sitting there on your own like that, the danger of feeling sorry for yourself and that’s not a good thing at all. I try to remember where I was not so very long ago and where I am today.

I think of the great many other people out there who are a hell of a lot worse off than I am and that’s all I need to keep it in perspective.

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The Man With No Arms & Other Stories

Karen Calder

It was beautiful; it really was, so beautiful. The loveliest little valley just out of Geraldine, on the way to Barkers Winery and it’s Christmas, the Christmas school holidays, six weeks of bliss. There was Steve, my partner at the time and his three kids and me with my two. We had the big tent and the camp table all set up, the shower tent, and of course it’s summer, warm all over with the smell of dry grass and I’d be down at the river in my bikini and the waterfall and all of us splashing and having the best of times. I loved it. We all loved it.

What I remember is this. We’d come back to the tent and thought about getting fish and chips for tea but the wind was getting up all dusty, really beginning to blow and so Steve started to put more pegs in around the tent. I would have gone to get the fish and chips but we only had Steve’s car there and it was such a big car that I didn’t feel confident to drive it. I could drive – I had my own little car – but I’d never driven anything that big. I was scared I couldn’t do it and because of that I stayed. I went inside with the kids and sat on a little campstool we had, the metal gas fridge was right beside me. Next to me on the other side was this food safe that I took hold of because the wind was blowing the side of the tent against it and moving it all around.

Why I didn’t just move the thing, chuck into the middle of the tent, I don’t know. Anyway, there I was sitting on this little stool holding the damn thing.

The tent must have been moving around somewhat because one of the kids started going on about the wind; it was enough to scare them a little and I said, “Look, if you’re scared, go and get under the bunks,”

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it was a sort of game. “Run and hide under the bunks.” That’s the last thing I remember. I mean I must have been thinking something, there was the tent flapping and banging around; I was probably pondering something really mundane – wondering what I was going to do about tea – when the trees fell.

After there are things you can think are memories and sometimes they aren’t memories at all. There’s the grief and the anger and the why me. There’s stuff that has no rhyme or reason and other things that just don’t feel fair at all.

Three weeks later I opened my eyes and one by one things came back to me, to my body and to my mind. First there was pain in my shoulder, my collarbone, and coughing up blood. For six weeks I couldn’t do anything but lie flat on my back; I wasn’t even allowed to sit up. Every few days they’d lift me. Five or six people in a line around me, they’d lift my body up and put fresh sheets under me; wash me. It was like being in a maze and I couldn’t find anything at all that looked like an exit. I was lying there with drips and things stuck into me not understanding much at all. My friends say I would talk to them calmly, “I’m paralysed, I’m not going to walk ever again.” One of my girlfriends said she was in tears; she had to leave the room. I wouldn’t stop talking about it apparently. I was talking like it wasn’t even me. Perhaps I was trying to get it into my head but I can’t remember any of it. All that time is still a blur.

Two trees fell on the tent. One had hit Steve and the other hit me.

The children were perfectly fine thank God. They weren’t hurt at all.

Steve was wondering where the hell I was because I hadn’t come out

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to help him. His oldest boy was great; he took the children out, got them out of the tent and up to the concrete toilet block straight away.

My youngest was only three and I didn’t look too good. Not the sort of thing you want children to see. Eventually Steve crawled into the tent wondering where I was. He found me lying against the squashed fridge.

The first thing he could smell was the ammonia leaking from it. I had a gash on my head and a fracture in my spine which had severed the spinal cord. The metal stool I’d been sitting on had gone through my ankle and almost severed that as well. One of my ribs had punctured my lung so my breathing wasn’t too hot. My right shoulder was badly dislocated and my right collarbone was broken. My sternum was also damaged, pushed up by the impact.

Thank God there was another couple who saw the trees on the tent and stopped. They were really great those two. They carried me into their car and he drove me to Geraldine where I was given morphine while I waited for the ambulance from Timaru. The woman drove Steve and the kids in behind us. At the hospital they worked on me for hours; my vital signs had dropped somewhat in the ambulance so really I was fortunate to be alive.

Of course, all this, the squashed fridge, the ammonia, all my injuries, they’ve been told to me by others. For me, one minute I’m there in the tent and the next it’s three weeks later and I’m in the spinal unit.

The Council felled a number of poplar trees around there after that, apparently they were all rotten. And then they sent me a letter. ‘We wish you a speedy recovery.’ I’ve still got it. I thought… I thought, you don’t know, you don’t know. You don’t know what this has done to my life.

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They say when you enter a hospital you leave your dignity at the door. They’re not joking. Once you’re there, that’s when reality kicks in.

It’s true, I’ve never felt so powerless in my life. Vulnerable is the word that springs to mind. I remember when I first realised people were washing me, doing everything that needs doing, I hated it. You know, this was my body, it’s private. I’d always been self-conscious about my body and so it was really difficult. Yeah, I found that incredibly hard.

It was like waking out of a dream, a bad dream, and suddenly there are all these changes in your life. I was lying there trying to take it all in and then at one point I realised, God, I’m alive! I’ve got a second chance. I’m going to do this. I’m going to live to the fullest. And it’s kind of like you’re euphoric until wham, reality hits you smack in the face again and you start to understand – you start to think of all the stuff that lies ahead. Just lying there on your back day after day, not being able to do a thing for yourself. And my children, God, my children coming every day and not being able to hug them, that was the hardest. They were my inspiration, my motivation to get well, to get out of there. I wanted so much to be with them. I wanted to get out of that hospital and be their mum again. It was a powerful incentive.

It was like starting all over again with a child’s body and an adult brain. There was a period of time when I couldn’t actually do anything at all for myself, you had to wait for someone to come to you and that was horrible. Oh shit, when I think about it I can still feel it.

It was awful. I mean you might go for a shower – there’s so much to be done, they’re so busy a lot of the time – and you might wait half an hour for someone to come back and help you. Your logical mind

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knows that they are busy but it’s still really hard to be left freezing your bum off; it’s the frustration of it, that they can’t get to you and you can’t do it yourself.

After six weeks on my back they said it was time to get up. I’ll tell you what, that first day of getting into my chair was wonderful. I was so excited. I’ve got a picture somewhere, it has my children standing beside me and I’m smiling like crazy because I finally thought I was going to get some control back in my life; to start living again.

I worked really hard after that. Hell, I was like a wobbly doll.

My break was at T5, from my boobs up I had full feeling. Below that, nothing. Everything had to be relearned. It took me two weeks before I was able to put my own bra and knickers on, to dress myself.

And everyday you’re down at the gym doing things like catching balls to get your balance and co-ordination back. They worked you hard there and actually looking back it was good that they did. You needed to adjust and learn things. You needed to get back into life. Of course for a while there I was like a one arm para because of my dislocated shoulder. It could take me half an hour just wheeling down to the gym.

Ha, I’d be trying to use the chair and going round in circles. Strange thing was it made me realise how lucky I’d been, how it could have been worse.

As well as the physical stuff, they gave us talks on all the other things you need to know – some of it you don’t want to know. One thing they talked about was skin care. Because you can’t feel parts of your body you have to be really careful about checking it out all the time. With all the pressure points and so on a little thing like an ingrown hair can turn

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into a boil or worse. One of the things they showed us was a colour picture of a someone’s bottom and – I’m not joking – there was a hole the size of my fist in it. It was so awful I went back to my room and I said, “That’s it!” I did – I lost it. “I’m leaving. I’m leaving. I’m not going to be a paraplegic, I’m going home.” It was horrible. And that’s why they did it, to scare you. And it worked. At least it worked for me.

After four and a half months I got out. Sounds like I was in prison, I don’t mean that. The people there at the spinal unit are pretty special – it is a special place. But going through all this stuff and being constantly surrounded by people – not able to have any space to yourself – it was hard. In some ways though going home was out of the frying pan into the fire. I didn’t realise just how much everything was taken care of in hospital. When something went wrong, someone was there to support

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you. When you get out, things happen and it’s like, oh God, I’m the one that’s got to do this and it was kind of scary. Reality kicks in.

The first two years were very hard. Everything is so unsettled; I don’t know that I really felt like a human being anymore. This is hard to talk about… I had no control over anything and until that happens to you – and I mean actually to you – you can’t know what that feels like.

Huge things are taken away. My ability to spontaneously get up and do something was gone forever. I had – have – to think about everything I do. I actually thought for a time that a part of me had gone. It hadn’t, I was still me, but I had to learn to work with a new body, a lot of which didn’t work at all, not like it once had.

In those early days I had control over nothing. I had accidents.

People don’t realise, when they see you in a chair they think, poor thing, can’t walk. They don’t think of all the other stuff that’s just as bad, or worse. It’s not just your legs that don’t work its other things too, like your bowels and your bladder. When you’re in hospital you want so much to get out. But at home, if you have an accident in the bed there’s no one there to help you clean up. You’ve got to do it yourself.

Get into a shower and clean yourself and then somehow all the bedclothes as well.

The worst thing ever was at a dinner party I’d gone to. I’d eaten some spicy food without thinking about it and a little while later, sitting on the sofa, this woman said, “God! The bloody cat’s farted.”

I sort of froze. I’m thinking please, oh please, don’t let it be me. But it was. It makes me sick to think of it – it was like diarrhoea, and it went right through where I was sitting. I wanted to become invisible,

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I wanted the floor to open but instead I had to say, “It’s me.” That was the worst thing. I‘ve never really talked about it – I don’t really want to now –­but I think it’s important that people know what it’s really like. I had to look at this woman and say, “It’s me.” Then I had to get up, get into my chair and finally I could leave. It was degrading. I felt I wasn’t a person; I was just this shitting thing. That’s how it felt to me – not now – but then. It’s different now, I know how to manage it, but it’s still not a side of my disability I’d wish on anyone. Thank God it doesn’t happen like that anymore.

A couple of months after I got out I ended up back in hospital.

I had the shakes, my teeth were chattering away like crazy. I’d got some infection they soon fixed up, but it makes you feel vulnerable. I was very angry in those first couple of years, things felt out of my control and that’s not where anybody wants to be. Talking to other people in wheelchairs, hearing about their experiences, that helped. I guess it’s why I can talk about this now. Yeah, when I think about it, talking helped a lot, helped me feel better in myself, but at the same time I don’t know if I’ll ever come to terms with it. I don’t know that I will ever accept it. I mean getting on with your life, adjusting to things and moving on, that’s one thing – acceptance, that’s a different thing altogether.

I guess that sounds weird, I’m not even sure if I can explain it properly but it has something to do with the idea that if I accept it I can’t change anything, and if I can’t change anything I don’t have control over my own life. I’d just be accepting my lot. Well, I don’t want to accept my lot. I’m not sitting around waiting for miracle cures;

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don’t think that, it’s more about the idea of choice. It doesn’t matter what you have or don’t have, if you have choice you still have a life.

What you choose to do with it, that belongs to each of us individually.

I often think about this guy who had his accident just after me. He was left a tetraplegic with hardly any movement at all. He moved his chair by shifting his chin forward, that’s how he got around. And he chose to die. He had been a very big healthy physical guy who decided he didn’t want to live his life that way. That was his decision and I think we owe him that respect. One day he just stopped eating, that was his choice.

The most fearful thing of all is not to be in control of your own life.

Becoming paralysed brought that home to me in a big way. Suddenly I had no control over my body, I couldn’t be the mother I wanted to be, I couldn’t even sit up and dress myself. That’s a pretty humbling experience that can take you to some rather strange places… yeah… it starts to trigger off all sorts of emotions. I mean you’re not only dealing with all this stuff that’s happening to you but you bring all your other problems with you as well. If life has given you some shitty things to deal with those things don’t fall away and go some place else, if anything those things are intensified. That’s how it felt to me, and what’s more you are forced to look at it. I could no longer put the blinkers on and say life is fine and everything is okay. I had to deal with it. Think about it – fear is pain. There’ve been times when I’ve been closed down with pain, when you can feel yourself dying from the inside out. When the pain gets that great you know you have to do something to survive.

Maybe it’s only one step at a time but you’ve actually got to start taking responsibility for your own life. Same as everybody else.

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It’s ironic really but I had a mother who was always worried about us hurting ourselves. She was very loving but also very protective.

I suppose every mother wants to look out for her kids but she worked hard to control our lives in such a way as to make sure we didn’t come to any grief. I remember we were always beautifully dressed and so on but we didn’t do a lot of the things other kids do. Also, unlike my sister who was absolutely, outrageously out there, I was a shy child.

There’s a memory I have of being locked in a shed by a whole bunch of kids when I was about five. It’s not something I remember well but it couldn’t have helped with the shyness. I’m still a bit that way but you learn over the years that you have to be involved to do things and I’ll tell you what, having a disability, becoming paralysed, it certainly changed my perspective on life. There were times before my accident when I was paralysed with fear; times when I would allow fear to stop me doing things I wanted to do. Well, then came the accident and now that doesn’t happen anymore. Life’s too precious. If I want to do something I’m going to do it. Maybe I’m going to feel the fear but I’m going to work through it and I’m going to do it. I’m here, you know, still here, and I want to have a life.

I’ve realised a lot about myself since the accident. It makes you think about things on the inside, the things I’ve kept deep down inside.

You realise just how much these things can affect your life. Becoming paralysed like that, it was strange, it was like opening a gate that I couldn’t shut again. I couldn’t shove it back in and that was scary.

I got so scared once I had this panic attack. I didn’t know what was happening. I thought it was asthma or something. I rang up the nurse

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all raspy, “I can’t breathe, I can’t breathe.” She goes, “It’s okay Karen.

Just relax, you’re having a panic attack.” Well okay, that’s when I learnt how powerful these things can be and that keeping stuff locked up inside you is no good thing. It’s like they say I guess, no pain, no gain.

Being afraid is a sort of disability in itself. These days I keep coming back to the importance of listening to me. Listening to my instincts, listening to what you need to do for yourself. That was an important issue for me. The person I was before couldn’t do that. Just couldn’t do it. Now I can.

Yeah, okay, there are still times when I get angry, still feel frustrated, the same as anybody, but then someone like Anne who gives me my massage will come along and we’re talking and connecting and I think, you know, how fortunate am I. Those are the good times, when you’re with people in your life that are special, when you are surrounded by family and friends and you don’t feel restricted or judged. The opposite, of course, is being judged. That’s a big one. Not just for me, for everyone. You get to see a lot of judgment when you’re in a chair, when you’re out in the open and an obvious target. It can well up in you, “Don’t look at me, don’t look at me.” I see my disability in the faces staring at me. You have to be careful not to pick up on other people’s energy, or take on other people’s stuff. Hell, everybody’s got their own stuff. I just reckon I’ve got enough of my own without getting set upon by others.

When I first came out of hospital I felt incredibly vulnerable. People would stare at me and I just hated it. And the thing is people pick up on vulnerability in all sorts of ways. I’d get people tapping me on the head

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or rubbing my shoulder “Oh you poor dear, I’m going to pray for you.

The Lord will fix you,” Really yucky sort of stuff, and I’m like feeling for God’s sake don’t touch me, don’t touch me! I just wanted to get out of there. I mean you can feel the difference when people are really making the effort to be friendly or helpful. But the last thing you want is somebody patting you on the head – which is incredibly patronising – and then insisting on ‘helping’ you when you’ve said no thanks, I’m fine. It doesn’t happen too much these days, I’m more confident and sure of myself. People pick up on that too.

I know most people mean well – it does take some gumption to go up and ask someone if they need help – and when I do need assistance I appreciate it. All I’d ask is to be treated like anybody else and for people to listen to what is said, not to feel they know best. No thank you, means no thank you.

If people really do want to help it would be good if they could take care of the simple stuff like disabled car parks. People think it’s a little thing, ‘I’m only going to be a minute,’ well hey mate, while you’re there for your ‘minute’ where do you think I’m going to go? What do you suggest I might do? I know people who carry these little flyers, You’ve Got My Wheelchair Park – Would You Like My Disability.

Some people just don’t give a shit; they have absolutely no understanding of what happens when they park there. I wish they knew how bloody frustrating it can be. It’s not just the closeness to the front door; it’s about having the space to get in or out of your car as well.

Disability parks are wider than normal so you can get from your chair into your car. If I can’t get a wheelchair park, sure as eggs I’ll come

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back and find I can’t get in. It’s like you’re locked out. Okay, it’s not the end of the world but try to imagine these constant little frustrations.

Having to get someone else to move my car just so I can get back in.

If I’m having a good day I can laugh about it. If it’s a bad day I’m not as tolerant as usual, in fact I can get a bit pissed off. Sometimes it’ll get to a bit of a slanging match, people swear at me and I swear back at them. Yeah, it can get interesting.

The truth is though, when you have a disability there are times when you just have to ask for help and that can make you really uncomfortable. It’s one more thing you have to learn. I don’t suppose I realised how big it would be until I actually had to do it. Actually had to open my mouth and ask for help. A lot of things go through your head at that point and it’s not… it’s just not a good feeling.

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There are other times of course when something happens and somehow it sort of puts things into perspective. About a year after I got out of hospital I was going to a tennis thing and I had to get my chair over this little step where the path went from concrete to shingle.

I still wasn’t properly used to the way it all worked and as soon as the small front wheels got into the shingle I tipped over. Fell right out of the chair. Well I’m sort of sitting there wondering what the hell I was going to do and this guy comes up behind me and says, “Would you like a hand?” And I’m thinking you know, thank God, “Yes please.” And so he picks me up and immediately I think something’s wrong, because when most people pick you up they grab you under the legs but this time my legs are hanging there and I had to grab them myself. Anyway, he puts me in my chair and I turn around to thank him and he’s only got one arm. “Would you like a hand?” suddenly takes on a whole new meaning. I mean I’m not being rude but it was kind of funny. It’s the sort of black humour that comes with the territory and begins to put your own life in some sort of context.

When your life changes in such a dramatic way so much seems to happen at once, so much is going on in your head that it can be pretty hard to see things with any sort of clarity. In some ways it took me back to my teenage years, I was all over the place then too. Pretty damn scatty really. I wanted to feel good about myself, I wanted attention from others and I used my sexuality to go out there and get attention.

I didn’t want the sex, what I wanted was to feel okay, to feel needed by someone else. So much seems to happen at once, your body is

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changing, the whole world seems to change around you and it all gets very bewildering.

I was 19 when I got married. That’s so young isn’t it… terribly terribly young. I thought I knew everything. I thought I knew what I was doing. I knew nothing. I was a child, and a year later I had a child of my own. I just had no idea. No idea at all.

When I separated from my husband I had a three and a half year old and a four-month-old baby. That was hard. I didn’t… at the time I didn’t want it to happen. To me it felt like he had died. I was really dependent in those days and so I had this huge grief thing. I couldn’t think straight at all. At one point I actually drove through a school patrol crossing in my little Morris 1100. What was I thinking, I actually stopped but then drove on through and so they rang the police. When the poor cop arrived I just bawled my heart out, just broke down completely. I felt like my life had been turned upside down and I didn’t know where to go.

I guess I muddled through, one foot after the other until I met Steve and life was good again. I was still young and attractive and it turned into a great relationship. It was sexy and it was fun. I learnt about the things I liked and the things I didn’t. I learnt a lot about me. I had kids and so did he and things seemed to work out just fine. Life had turned the right way up and I was smiling again until the day the sky darkened and those trees fell. After that nothing was really the same again.

It seemed to change everything. My body wasn’t the only thing that got crushed that day.

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He was a good man. He did everything he could to help as I recovered. Helping me get around, do my exercises and all the stuff that was so suddenly different in our lives. That was good, but there was another part to our relationship which was a very physical one and at some point I switched off in that regard. I couldn’t… I needed to deal with my life and somehow that meant putting my sexuality – and most other connections we had with one another –­to one side. Just trying to exist was enough. I didn’t know how to manage anything. I was dealing with stuff I’d never even thought of, let alone knew how to cope with and I couldn’t… I didn’t know what to do and so I sort of pushed him away.

I was living with a body that didn’t function. My bladder was beyond my control – it did whatever it wanted and my bowels weren’t much better. For the first couple of years I was averaging three or four accidents a week. I also felt so much guilt –­more than I can ever tell you – for all that time away from my children. I was scared they would suffer for it and they did. It affected everyone close to me. It’s hard to say these things but it’s true. For quite a long time I didn’t feel very desirable or loveable, it was enough just to deal with the things that were happening. To exist was enough, wanting an intimate relationship wasn’t really high on my list.

It must have been 18 months or so after the accident that we finally parted. I actually relied on him more than I realised, something he understood more than I did at the time. Of course it happened at the worst possible time as these things always do. He’d come over to mind my kids while I went into hospital for some laser treatment and

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it became clear before I left that day that it was all over. That we were parting company. Bad timing. I was sitting there in the hospital tears streaming down my face. God knows what they thought. It wasn’t all me either, I know it was hard on him as well. I guess these things are never good are they.

I was sad, but to be honest I was also scared. All sorts of things went through my head. I began to think that that would be it, that I would never have another relationship. It’s true, it felt like it would be the last relationship I’d ever have. I suddenly wanted to hold onto it somehow but for all the wrong reasons. I was sitting there looking at myself and seeing a woman with a disability and two children. Who was ever going to want me? It was a real fear – no one will ever want me again.

There’s also a sort of twist here, while I found that sort of physical connection difficult in those initial few years, one of the first questions I asked at the hospital was, “What about my sex life?” You know, was I to be asexual? And that was a big concern. I’m sure it’s a big concern to most people in that situation. We are sexual beings; it’s an important part of our lives. You need to know that it will still be there for you when you want it to be. And the thing was they didn’t really have any answers for me, nothing I felt I could make any use of. It was all very ambiguous which just leaves you sort of floating and that’s not a very good feeling either. I wish there’d been a book or something – “Please, give me some literature, I want to know what will happen!” – just to help me understand, that would have been good.

My own sexuality was there, it never left, but it was on hold somehow. You need time to deal with the processes and changes that

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take place after something like this, but people still need to know that their sexuality will come back to them.

In the beginning being alive is a big enough challenge. The grief and the pain take over for a time. The difficulty of learning to live, getting some strength back into your body, just learning to dress yourself, it all takes such energy. You need to deal with the anger, with being pissed off, with wanting to get up and leave, to walk away from yourself and all that is happening to you. Except, of course, you can’t walk anywhere.

There is no getting away from this, time slows down, which –­and in those early days you don’t know this yet – is a sort of gift.

At least it was to me. You are forced to slow down, and yeah, to think.

Stop and think, stopping and thinking, like a line in this poem I have, ‘Can you sit with your pain or mine’. Say perhaps in a conversation when everything goes quiet, can you be in that stillness, can you just be there. Can you still yourself enough to know things honestly and just speak it, speak the truth. It’s taken a while but I’ve learnt quite a bit about myself over the years. I’ve learnt how to look after the inside because that’s the part that really matters. I want to have fun, to enjoy the life I have and you can’t do that if you don’t like who you are; if you don’t know who you are. And the other thing is, if you can’t love yourself, it’s pretty hard for anyone else to love you, isn’t it.

It’s never easy to meet people, people that you really click with and let’s be honest, it’s harder still if you have a disability. Something I’ve noticed is that a lot of guys in wheelchairs end up marrying nurses which is very interesting. Women are just more nurturing than men.

Maybe that sounds too simplistic but that’s been my observation.

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I’m not blaming anyone, I mean who isn’t scared of opening themselves up. Going into something new and allowing yourself to be swept away by something special, it’s scary. I’ve known men in my situation – in a wheelchair – and… I’m not sure how to say this. It’s just that for men, often as not the penis is everything. It’s what guys focus on and I’m not saying that’s a bad thing I’m just saying that if it’s not happening, there are other things, other emotions, other feelings that women love.

When you are making love with somebody it’s not just about the physical, it’s about a connection you have with another human being.

Never make assumptions about others, that’s something I’ve learnt as I’ve gotten older. If you’re attracted to someone with a disability don’t let anything put you off. Have the courage to treat them as a person – don’t treat them as their disability.

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Speaking about my own sexuality is a bit hard. I feel a bit uncomfortable with that conversation. Partly because it’s about loss.

Some things are not as intense as they used to be and there is a cost to that, a sense of loss that may never go away. Everything about me is different than it used to be. But then there is also a gain. The gain has been learning to let go of my inhibitions… feeling comfortable enough to do that. And most importantly I have that greater understanding of myself. That’s why having a casual relationship is something I could not easily become involved with now. I don’t think it would work for me.

I would need to know that person properly, and that person would need to know me for it to be of value. That’s not to say I’m not a romantic and that I wouldn’t like to fall in love again. Most people want to share their life with someone.

I had an experience a while back where I allowed myself to be swept away and to tell you the truth it was bloody wonderful. Scary, but yeah, it was fun and exciting and when I look back, oh God, it was absolutely romantic. He used to pick me up and carry me around, it was so cool.

He loved it, and I loved it. Okay, it was also to some extent superficial, but we both knew what it was and that was all right with me. He told me I was beautiful and I needed to hear that. I needed to know I was a woman and that someone desired me. He knew enough to know that making love is not just a physical thing, that it is a mind thing as well; that not just touch, it’s sight and smell and taste and a lot of other things besides. I really gave myself over to the whole experience and it was great. I learnt more than I realised at the time and when it ended I also learnt that it hurt. Ha, I think of it now as the agony and the

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ecstasy. That’s what it felt like. And yeah, I also learnt that the more you give, the more you get back.

I actually think I was able to go places I’ve never been before because I felt loved, incredibly loved, and truly accepted for who I was. That’s a powerful thing, something perhaps I’d not properly felt before. Okay, it’s gone now but at the time he loved me for who I was and that was a difficult thing for me to believe then. The gift he gave me was to show me it was possible. So that’s what I want. That’s what I’m willing to dream for – what I dare to dream for – a soul mate. I also ache for more of a connection with myself. Some people just naturally seem to like who they are but that wasn’t always my experience. I’ve worked hard at that and do you know something, the more I connect with myself, the more I would like to share that with someone else. Funny, I feel a little uncomfortable saying that – I shouldn’t. I guess that’s why I want to tell my story. I don’t want to feel embarrassed or uncomfortable about my life, I just want to live in it.

They say life is a work in progress and when I think back to that girl in her twenties to the woman I am now in my forties, I think perhaps they are right. I had a great smile when I was young and then it went away for a while but I think it’s back now as good as ever. The essence of who I was is still the essence of who I am, it’s just that these days I’ve learnt to know myself a lot better than I used to. I’ve learnt to be more real which sometimes scares people. It’s hard to be open and honest, for me it was anyway, but having a disability makes you get real in a bit of a hurry. You can’t pretend something doesn’t exist when it’s right

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in your face. It forced me to ask for what I needed – which was hard – and it made me look at who I was which was even harder.

A lot has happened in my life since the day I woke up in that hospital. I’ve learnt to value a lot of things others take for granted.

That’s a gift I’d wish on all mankind – that we could appreciate the value of things without having to lose them first. For me there’s still a process that goes on, not as intense as it was in the beginning, but there are still things I never stop grieving for. I don’t dwell on it or cry about it as I once did, but every now and then I close my eyes and let myself imagine. To run and run along a beach somewhere and feel the sand between my toes, to feel the breeze on my legs and stand face to face and fling my arms around somebody and hug them and to dance and dance away. That’s something to imagine – to love the fact that you can – and imagine if you couldn’t.

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Acknowledgements Liz Ryburn is the reason you’re reading this. Of course many people play a part in any such endeavour, foremost and most importantly, the people whose stories make up this book. But it was Liz who started it all and David Matthews who made it happen.

In trying to persuade the then recently graduated photographer Hanne Johnsen – a Norwegian – to stay and work in New Zealand, I began canvassing friends in the hope of finding her employment.

Liz, a manager at CCS, was both kind and perceptive enough to agree to a meeting. She brought David, her regional manager to the table and I bought Hanna along with a portfolio of her work. As always, it’s exciting to meet people with the ability to see possibilities in raw ideas and who have the energy and will to make them happen. Both David and Liz immediately saw the quality of Hanne’s work and what followed was a discussion on how CCS might best use her talents to contribute to their educational programme. A number of compelling ideas and possibilities were discussed at that meeting and within a week or so Hanne was on board. Liz left it another week or two before sending me an e-mail, a little reminder, she said, of my suggestion about a book and how I had ‘agreed’ to write it.

My daughter, Kim, always an inspiration has worked for a number of years now in the area of music therapy. Looking back I can see it was the discussions we’ve had over the years about her work – her stories of working with people and their various disabilities – that had me returning Liz’s e-mail and conceding she was probably right; that having suggested such a thing I should probably get on with it.

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All work of this type is a collaboration and in this one Hanne Johnsen plays a major part. It requires no words from me to tell of her ability; you only have to look at the photographs to know how well she can make a picture. More importantly, looking carefully, you begin to understand something of the mutual rapport she has with the people that appear in her images. I can say it was my pleasure and good fortune to have her as a student for four years, though I’d make no claim to her extraordinary energy – something she has in abundance – or her ability to navigate the wilderness that confronts any person at the commencement of such a work. The archive she has created for CCS, which includes the photographs in this book but much else besides, is something of value that will be well used for a long time to come.

The first draft of Steve Roome’s story was written in Sydney.

My son, Jason, kindly shared his office with me while I wrote it.

More importantly he took time to read and consider the piece, discussing possibilities and contributing ideas that helped get the project off to a good start. At the other end of the process, having dispensed their usual support along the way, good friends, Bruce & Sally Ansley, once again contributed time and intelligence to the editing process. Others who have helped with advice and encouragement along the way include, Bruce Connew, Catherine Griffiths, Bill De Friez and Veronica MaCarthy; while Kate De Goldi lent a sympathetic ear whenever I moaned about the hard bits. Thanks are due also to Vera Larson and Sue Howie for producing clear and precise transcriptions from the many hours of taped interviews.

271 Acknowledgements

Lion Foundation’s support for the making of this book and its publication has been extremely generous. While a great deal of the ongoing work for A Place In Time is made voluntarily, large scale undertakings such as this could simply not happen without adequate funding. That the Lion Foundation – through CCS – considered this a significant project and delivered the funding which made it feasible, is very much appreciated.

Similarly, without the support of my employer, the University of Canterbury, there would be neither the time nor the complex support needed for a project of this kind and for that I am grateful. In particular I would like to acknowledge my colleagues at the School of Fine Arts who have been helpful and supportive of the A Place In Time Project – as has been Ken Strongman, Pro Vice-Chancellor, at the College of Arts and his staff.

Bridgit Anderson returned to New Zealand recently after many years of living and working in London. Her interest in and commitment to the A Place In Time project since that time has been absolute. Indeed, without her commitment to both the making of her own excellent work and help with the administration of the project, it’s difficult to imagine how we might have coped.

The design process is an important part of any book and we have been lucky once again to have someone of Aaron Beehre’s ability to give shape and form to this work.

In production it’s always a treat to collaborate with Wyatt & Wilson Print. Never less than enthusiastic with their support, they remain committed to producing work of a high standard.

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As always my wife, Trish, has reacted with patience and good humour, putting up with the clutter and chaos that a work of this kind brings, tolerating the hundreds of sheets of typed interviews which filled the rooms of our home for months on end while I tried to sort and make sense of them. Without her continued help, intelligent reading and perceptive comments, there would be no book. She makes it possible.

Lastly, I must confess to a limited knowledge of CCS Canterbury West Coast and its role in the community before spending time with them over the last couple of years. Having done so my respect for the organization, for those who work within it, and in particular the people it works with, is great indeed. The privilege has been all mine.

273 Acknowledgements

A Place In Time 21st Century Documentary Project

The A Place In Time project arises out of the School of Fine Arts, at the University of Canterbury, Christchurch, New Zealand. Its purpose is to make documentary work about a city and a cross-section of its people that might contribute towards an increased knowledge, perception and tolerance of one another. Work on the project began in the year 2000 and since that time, using photography, oral history and documentary writing, we have produced 11 exhibitions and a number of other educational projects from our archive. The Man With No Arms & Other Stories, is our fourth book.

Other books by A Place In Time: My Own Shade Of Brown My Place Red Bus Diary

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Glenn Busch began his working life re-treading truck and car tyres in an Auckland factory. Since that time he has lived and worked in many different places. In the early sixties, a chance viewing of Brassai’s 1930’s Parisian photographs began an abiding interest in documentary photography and its possibilities. In the 40 years since he has been using a camera – and later a tape recorder – to gather the stories of people he meets along the way. Currently a senior lecturer at the School of Fine Arts, University of Canterbury, he is also director of the A Place In Time documentary project. He is the Author of Working Men, You Are My Darling Zita and My Place.

Hanne Johnsen was born above the Artic Circle in Norway in 1973 and as a consequence spent half her childhood in the dark. She completed a degree in Environmental Biology at the University of Tromsø in 1999 and traveled to New Zealand the following year. Continuing her education, she completed a foundation year in Fine Arts at the University of Canterbury after which she decided to pursue a career in documentary photography. Her first major exhibition, The Ninth Year, arose from her interest in the life of young people and the importance of those early years. She completed her Bachelor of Fine Arts degree in 2003 and since that time has worked with CCS compiling a portfolio of work to be used in the area of disability awareness.

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Maybe we’ve gone to a restaurant for dinner and it would be nice if people were looking at us because we’re a great couple. Feeling happy for us, two people out having a great time together, which we are.

But no, that’s not the reason. The reason they are looking our way, is that I am eating with my feet. Steve Roome

In this absorbing book Glenn Busch captures with compelling authenticity the intimate stories of nine people who live daily with the reality of a disability. They speak candidly of growing up, the importance of work, family, relationships, parenthood, of wanting to be treated like everyone else in a world that still chooses to see them as different.

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