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1111
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Researching Life Stories
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3111 Researching Life Stories reflects critically and pragmatically upon the use
4 of life stories in social and educational research. Using four life stories as
5 examples, the authors apply four different, practical approaches to demon-
6 strate effective research and analysis.
7 As well as examining in detail the four life stories around which the
8 book is written, areas covered include:
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20111 • Method and methodology in life story research
1 • Analysis
2 • Reflections on analyses
3 • Craft and ethics in researching life
4 • Policy, practice and theory in life story research.
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6 Throughout the book the authors demystify the issues surrounding life
7 story research and demonstrate the significance of this approach to under-
8 standing individual and social worlds.
9 This unique approach to life story research will be a valuable resource
30111 for all social science and education researchers at undergraduate and post-
1 graduate level.
2
3 Dan Goodley is Reader in the School of Education, University of Sheffield.
4 Rebecca Lawthom is Principal Lecturer in the Department of Psychology
5 and Speech Pathology, Manchester Metropolitan University. Peter Clough
6 is Professor of Education at Queens University, Belfast. Michele Moore
7 is Director of the Inclusive Education and Equality Research Centre at
8 the University of Sheffield.
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Method, theory and analysis
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3 Peter Clough & Michele Moore
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5 First published 2004
6 by RoutledgeFalmer
7 11 New Fetter Lane, London EC4P 4EE
8 Simultaneously published in the USA and Canada
by RoutledgeFalmer
9 29 West 35th Street, New York, NY 10001
20111
This edition published in the Taylor & Francis e-Library, 2004.
1
RoutledgeFalmer is an imprint of the Taylor & Francis Group
2
3 © 2004 Dan Goodley, Rebecca Lawthom, Peter Clough and
Michele Moore
4
All rights reserved. No part of this book may be reprinted or
5 reproduced or utilised in any form or by any electronic,
6 mechanical, or other means, now known or hereafter
7 invented, including photocopying and recording, or in any
information storage or retrieval system, without permission in
8 writing from the publishers.
9
British Library Cataloguing in Publication Data
30111 A catalogue record for this book is available
1 from the British Library
2 Library of Congress Cataloging in Publication Data
3 Researching life stories : method, theory, and analyses in a
biographical age / Dan Goodley . . . [et al.].
4 p. cm.
5 Includes bibliographical references and index.
6 1. Social sciences–Biographical methods. I. Goodley, Dan, 1972–
H61.29.R47 2004
7 300′.72′2–dc22 2003020014
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9 ISBN 0-203-41337-7 Master e-book ISBN
40111
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2 ISBN 0-203-33935-5 (Adobe eReader Format)
ISBN 0–415–30688–4 (hbk)
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ISBN 0–415–30689–2 (pbk)
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Contents
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4 Preface ix
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PART 1
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8 Four life stories 1
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20111 1 Gerry O’Toole: a design for life 3
1 DAN GOODLEY
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2 ‘I’d never met a vegetarian, never mind a lesbian’:
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4 Colleen’s life story 15
REBECCA LAWTHOM WITH COLLEEN STAMFORD
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6 3 The death story of David Hope 26
7 MICHELE MOORE
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9 4 Frank 40
30111 PETER CLOUGH
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PART 2
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4 Doing life story research 53
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6 5 Approaching: methodology in life story research 55
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6 Doing: method in life story research 71
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9 7 Informing: epistemology in life story research 97
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1111 PART 3
2 Making sense of life stories 111
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4 8 Frameworks: analysis in life story research 113
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6 9 Findings: four analyses of life stories 125
7 10 Reflexivity: reflections on analyses 149
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1011 PART 4
1 The age of biography: personal and political
2 considerations 163
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4 11 Teaching: craft and ethics in researching life stories 165
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6 12 A/Effecting: audience and effects in researching life stories 175
7 13 Applying: policy, practice and theory in life story research 185
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20111 References 197
1 Index 208
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Acknowledgements
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3111 We would like to thank the following people for comments and insights
4 on the drafts of this book – Grant Cossey, Bill Hughes, Marie McGuran,
5 Griet Roets and her Violent Femmes, Kevin Paterson, Jane Tobbell, Nick
6 Watson, Open University summer school students Durham 12–18 July
7 2003, R&J.
8 For inspiration thanks to Christine Abbott, Simone Aspis, Lisa Capps,
9 Jackie Downer, Jeremy Hoy, Khadam Hussain, the Libertines, Kevin
20111 O’Sullivan, Elinor Ochs, Joyce Kershaw, the Manic Street Preachers,
1 Underbank Working Men’s Club, Jeannie Wilson and ‘Kevin’ and ‘Karen’
2 from Stockport.
3 And finally, thanks to some of the storytellers who continue to make
4 our efforts seem so cheap: Kevin Fehin, Tony Parker, Ken Plummer,
5 JD Salinger and Nicky Wire. Libraries gave us power . . .
6
7
Dedication
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9 This book is dedicated to our children – Ruby and Rosa, David, Eve and
30111 Charley.
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3111 Researching Life Stories picks at some of the tangled weaves of narrative
4 research. Our belief is that life stories – our chosen form of narrative –
5 tell us much about individual and collective, private and public, struc-
6 tural and agentic and real and fictional worlds. Stories occupy a central
7 place in the knowledge generated by societies. Expert discourses are being
8 challenged by exposing their narrative construction. Notions of identity
9 are linked into projects by which people write their own lives in varying
20111 conditions of alienation and empowerment. Taken-for-granted ‘truths’ are
1 understood as stories to be told and, often, replaced by stories of a seem-
2 ingly more plausible nature. Grand political and cultural narratives are
3 under attack by personalised and localised narratives, though simultane-
4 ously these ‘mini narratives’ are part of a wider movement of global
5 storytelling made available through advances in technology. Bowker (1993)
6 and Booth and Booth (1994) observe that we now find ourselves in an
7 age of biography. We consume stories of celebrity, plug into stories of
8 reality TV, blur child and adult fiction in our search for escapism, creepily
9 marvel at the 24-hour nature of wartime storytelling. The individual and
30111 collective victims of dominating knowledges counter such subjugation by
1 celebrating their localised, indigenous and personal tales. Maybe this
2 is the truly emancipatory position – when a story by challenges a story
3 of. Perhaps Marx was right: all that is solid melts into air. Medicine,
4 socialism, science and religion fold under the weight of their narrative
5 construction. (Other) Stories are there for the taking and the telling.
6 Contemporary societies and cultures are increasingly being understood as
7 fragmented, uncertain, risky postmodern spaces. Stories fundamentally
8 capture the diverse and changing nature of individual and social lives at
9 the start of the twenty-first century. But this is far too much relativism
40111 for our palettes to take. The nasty taste in our mouths left by anarchic
1 postmodernism suggests that there is more to life than simply stories.
2 Narratives are always politicised, structured, culturised and socalised.
3 Questions remain about the political, structural, cultural and social arte-
44111 facts within life stories and their telling. Narratives may be our best hope
 x Preface

1111 of capturing structures that continue to shape, divide and separate human
2 beings.
3 Researching Life Stories is a very modest attempt to immerse oneself
4 in the minutiae of the biographical age. But it also endeavours to step
5 back and look again at what can (and should) be done with stories, where
6 they come from, how they are told and for what purposes.
7 Hitherto, a number of texts have promoted narrative and life story
8 research (Bertaux, 1981; Plummer, 1983; Parker, 1990; Riessman, 1993;
9 Smith et al., 1995; Atkinson, 1998; Booth and Booth, 1998; Denzin and
1011 Lincoln, 1994, 1998; Erben, 1998; Goodley, 2000; Chamberlayne et al.,
1 2000; Miller, 2000; Clough, 2002). We believe that while these volumes
2 have made a clear case for the narrative turn in the social sciences, and
3 have resonated with contemporary social theory, they have focused less
4 on the actual doing of life story research. Furthermore, we have often felt
5 that previous work fails to explicitly account for the relationship between
6 different epistemologies, method/ologies and analyses. This book aims to
7 provide a coherent narrative of ways in which we may approach the
8 project of Researching Life Stories.
9 The book is organised around four life stories (Part 1), four approaches
20111 to method/ology (Part 2), four analytical frameworks and analyses
1 (Part 3) and four specific takes on craft/ethics, audience and theory/policy/
2 practice (Part 4). We embrace four different disciplines (sociology, psy-
3 chology, disability studies and education), four different epistemologies
4 (poststructuralism, feminism, social model of disability and literary theory)
5 and four different research areas (‘learning difficulties’ aka ‘mental retar-
6 dation’ and self-advocacy, women and work, disability and human rights
7 and educational policy). We have written an interdisciplinary text that
8 will be relevant to a host of students, writers, researchers and practi-
9 tioners. In the process of unpacking life story research we may end up
30111 deconstructing the life stories that we initially present. Never mind, we
1 hope we have done some justice to our narrators/narrative subjects and
2 encouraged others to consider stories as the very stuff of research. We
3 start the book by presenting four original life stories – the beginning of
4 our journey into Researching Life Stories.
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3 Four life stories
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4 focus of subsequent discussions. For now, we invite you to put this book
5 by the side of your bed for some late night reading. Alternatively, take
6 this book away for a holiday read or a long train journey. Or, you might
7 just want to dip in and out of these stories at odd times, here and there.
8 Whichever way you read this book, we hope you read the stories before
9 any of the other chapters.
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 Chapter 1
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Gerry O’Toole
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A design for life
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6 Dan Goodley
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3111 Here are some of my precious stories. Events that shaped me. You won’t
4 have heard of them. It’s time to start listening to what we have to say.
5 Sooner or later, you’ll listen. You will have to.
6 It’s difficult to explain to you about places you may have never expe-
7 rienced. You have seen people like me, though. In shopping malls, in
8 fast food restaurants, in minibuses with steamed-up windows. In small
9 groups, shadowed by senior, more competent adults; middle-aged women
20111 or young trendy blokes with goatee beards. Our cultures sometimes
1 cross swords. You have words for people like me. Retard, Joey, defec-
2 tive, idiot, spaz, mong. You might not use these words now but if pressed
3 you would shamefully recall a childhood vocabulary that flourished with
4 such insults.
5
6 ‘Frog’, Paul shouted, ‘Frog’. The gang fell about, giggling. (‘Frog’ was
7 all Paul said, that and ‘I love Jonny Vickers’, much to Jonny’s embar-
8 rassment. Paul once spent the day spray painting ‘I love Vickers’ on
9 lampposts around the town. He was one of only two lads in our
30111 secondary school who had support workers with them at all times
1 including bus trips as well as class time. He was a minor celebrity in
2 this sense but a celebrity for people to laugh at. We kidded ourselves
3 we were laughing with him.)
4 Then Paul pulled down his pants and asked us, ‘Do you want to
5 see it wee?’ ‘Yeah – ha, yeah – I want to see it wee!’ shouted Tez.
6 And so Tez did – Paul neatly peeing into the drain. And we all
7 laughed, all eight of us in Litton Close, a cul de sac near our primary
8 school – recalling a place where our prejudices weren’t so vicious.
9
40111 Now, I guess, things are more subtle. You will feel it inappropriate to
1 catch my eye, to smile or to acknowledge me. And if you do clock me,
2 you’ll probably wonder afterwards if it was the right thing to do. You
3 can’t win and neither can I. We are – how do they put it? – always
44111 batting for different sides.
 4 Gerry’s story

1111 I am a resident. You reside.

2 I am admitted. You move in.
3 I am aggressive. You are assertive.
4 I have behaviour problems. You are rude.
5 I am noncompliant. You don’t like being told what to do.
6 When I ask you out for dinner, it is an outing. When you ask
7 someone out, it is a date.
8 I don’t know how many people have read the progress notes
9 people write about me. I don’t even know what is in there.
1011 You didn’t speak to your best friend for a month after they
1 read your journal.
2 I make mistakes during my cheque-writing program. Someday I
3 might get a bank account. You forgot to record some
4 withdrawals from your account. The bank called to remind
5 you.
6 I wanted to talk with the nice-looking person behind us at the
7 grocery store. I was told it was inappropriate to talk to
8 strangers. You met your spouse in the produce department.
9 They couldn’t find the bean sprouts.
20111 I celebrated my birthday yesterday with five other residents and
1 two staff members. I hope my family sends a card. Your
2 family threw a surprise party. Your brother couldn’t make it
3 from out of state. It sounded wonderful.
4 My case manager sends a report every month to my guardian. Its
5 says everything I did wrong and some things I did right. You
6 are still mad at your sister for calling your mom after you got
7 the speeding ticket.
8 After I do my budget program tonight, I might get to go to
9 McDonalds if I have enough money. You were glad the new
30111 French resturant took your charge card.
1 My case manager, psychologist, occupational therapist, nutritionist
2 and house staff set goals for me for the next year. You haven’t
3 decided what you want out of life.
4 Someday I will be discharged . . . maybe.
5 You will move onward and upward.*
6
7 What do you feel when you see us? When you saw that ‘mongey guy’
8 in the street? Is it pity, sadness, a sense of fortune? Well, you might be
9 right in having those feelings of concern. But the reason you feel like you
40111
1
2 * This anonymous poem entitled ‘You and I’ was given to a member of Values into Action
3 (a British campaigning organisation for people with learning difficulties) while on a visit
44111 to the USA (no date).
 Gerry’s story 5

1111 do is less to do with my ‘condition’ and more down to the world that
2 creates me in its own vision. In spite of or because of these difficulties
3 we have in relating to one another, people like me – my comrades and I
4 – we have been quietly getting on with changing things. You just never
5 knew anything about my story and all the others that have come from
6 this new burgeoning, exciting, radical movement called People First. But
7 our successes are never easily achieved. Some difficult terrain has been
8 tread.
9
1011 It was freezing. As usual I hadn’t worn a coat. As a boy, my mother
1 often told me that I had a strange little body. I became sweaty after
2 the lightest of walks on the coldest of days. But today it was sub
3111 zero. As I entered the outdoor market, Gerry was, as always, conspic-
4 uous. Red, white and black bobble hat that just hid his long, straggly
5 thinning hair. A greying stubble made him look 10 years older than
6 the 39 that he actually was, though warm, piercing green Irish eyes
7 ensured that you were charmed. A beige canvas bag full to bursting
8 with papers and documents weighed down Gerry’s left shoulder to
9 the point that he walked with an uneven gait. Scruffy green combat
20111 jacket, brown waistcoat, cream shirt, brown trousers and new white
1 trainers completed the ‘vision’.
2 ‘How are you, Gerry?’
3 ‘Fine. There is this chap who wants to come to the People First
4 meetings.’
5 ‘Who is he?’
6 ‘I don’t know.’
7 ‘Is he a member of staff from the centre?’
8 ‘I don’t know.’
9 ‘Is he a researcher wanting to find out about self-advocacy?’
30111 ‘I dunno.’
1 ‘Is he a person with learning difficulties?’
2 ‘Dunno – didn’t ask him.’
3
4 My background? What? Oh . . . family. Ha! You’ve opened a can of
5 worms there! I come from a large Irish Catholic family. Three brothers,
6 two sisters. My father moved over from Galway on the West coast of
7 Ireland in the 1950s. He met my mother at a ceilidh in Manchester. She
8 was born in Blackburn. They were only together for a while before my
9 mother got pregnant with my brother Jack. A quick wedding was organ-
40111 ised and they managed to get themselves a small terraced house in
1 Rusholme in Manchester. My mother and I, my brother Kevin and his
2 wife Julie, we still live in that very house. My auntie lives next door. My
3 Dad passed away six years ago. I remember his funeral as if it were
44111 yesterday. The coffin was laid open in the front room and neighbours,
 6 Gerry’s story

1111 friends and folk from the church paid their respects. I stood by my Dad
2 throughout the day. His skin was waxy and his hair looked thicker than
3 it was when he was alive. He would have liked that – the hair bit, I
4 mean. Only my mother, Jack, Michele and I could bear to look at Dad.
5 Colleen, Kevin and Callum never went near Dad’s coffin. They wanted
6 to remember him as he was.
7 My father was a tall, strong, vocal man. He smoked Woodbines and
8 loved a pint in the local working men’s club. He was funny and imposing.
9 When I was 18 he took me and my older brothers to the club to cele-
1011 brate. I am now a paid-up, card-carrying member. The Friday after my
1 Dad died I went in. At the bar, Clive the secretary tells me that I need
2 to pay for my membership. ‘You’re a member in your own right now
3 Gerry. Now your Dad has gone, God rest his soul, you can’t be his guest,
4 you need to be a proper member.’ I asked him how much it was. ‘85 to
5 you.’ 85 quid, I thought, ‘can I pay in instalments like me Mam does
6 with the washing machine?’ ‘85 pence, you daft bugger!’ laughed Clive.
7 They often get me like that.
8 Somehow, there was always someone around. If my Mam and Dad
9 were at work then there was an older sister there to make my tea, run
20111 my bath, tickle me until I burst with frustration. Every morning when I
1 was young my Dad walked me to school. We would stop at the dual
2 carriageway across from the special school and watch as my schoolmates
3 were ferried past in ambulances. When they finally arrived at school they
4 were travel sick from the rough journey. Jeremy would make me laugh,
5 telling me how they’d hang onto the stretcher that was kept between the
6 rows of seats. Of course, when they went round a corner the stretcher
7 would move and they’d be pulled to the back of the bus, scattering those
8 who stood up, kids flying into one another. Once in school, things were
9 never so bad for me. I have friends now who never had a family, a safe
30111 haven. Sophie’s mother couldn’t cope. Sophie was ordered off to hospital
1 when she was young. She never said much about her time there but I
2 know from others that she was made to wear weighted boots in institu-
3 tions and they used to drug and hit her.
4
5 A zillion dormitory keys held menacingly by his side. My brave face
6 as Mogadon kicks in. On to avant-garde dance troupes and loud
7 meetings of comrades. But always one of them, at the day centre or
8 at Main House, my new ‘home’. Waiting for failure, ready to punish.
9
40111 I was in and out of special school and eventually left at 15. They were
1 strange places, funny buildings, you were labelled as soon as you got
2 there. Lessons were boring, colouring-in books that were already covered
3 with the crayon scribbles of previous years’ students. Class after class
44111 with the headmaster playing piano. Asking us which piece of classical
 Gerry’s story 7

1111 music he was murdering. Keen, lively, young teachers joining us straight
2 from teacher training college only to promptly leave by the end of their
3 first or second term. Broken people. Students sound asleep in class,
4 drooling onto the desks where they rested their heads. My mother would
5 complain, ‘Why can’t Gerry be taught proper mathematics and English,’
6 she would tell the teachers. They told her I was struggling so much that
7 I wouldn’t be able to do the things my brothers and sisters were doing.
8 Daft really, because when I worked with my Dad on the markets I was
9 really good at counting up the change people needed. One teacher said
1011 to my mother that I would never be able to read and write. I did, though.
1 At home. It wasn’t the best of places. One day, I broke into the care-
2 taker’s office. I nicked a spade. Some time later, the teachers caught
3111 me trying to dig myself out of the school – I was trying to escape under
4 the fence. I got into trouble a lot at school for talking or having a laugh
5 in class. The school was eventually burnt down by some big lads off
6 the estate.
7 After I had left, some of my mates managed to get themselves into the
8 ‘normal schools’. They told me that they had loads of parties, drinking
9 with the other kids in the pubs in town.
20111
1 The sixth form had some new members – 12 people with learning
2 difficulties from the Day Centre. Kevin – Down’s syndrome lad – was
3 the only one who was school age. Kevin followed Bant around, much
4 to the amusement of Bant’s fellow sixth-formers. Bant was popular
5 – stupid but popular. And then when Bant got bored he would play
6 to the crowd.
7 ‘Whose your favourite, Kev?’
8 ‘Bant.’
9 ‘Who do you love?’
30111 ‘Bant.’
1 ‘Course yer do.’
2 And then Bant would run out of the classroom for a ciggie. Too
3 quick for Kevin, who would bury his face in the seat – sobbing his
4 heart out.
5
6 Others joined the special needs group at the tech. I was never going to
7 be packed off to some ‘life skills class’. As a teenager, school meant little
8 to me. Well, I was on the market stalls at the time, so it wasn’t really
9 interesting. I really started to get into the market stall work. Some of my
40111 mates either went to the day centre full time or, if they were lucky, got
1 a job (if that’s what you can call not being paid to work) farming,
2 T-shirt printing or decorating old people’s houses. My brother jokes that
3 we are part of the Irish Catholic mafia. A job was always going to be
44111 there for me.
 8 Gerry’s story

1111 The boys’ toilets. Lunchtime. Brid [18 years, small in stature, long
2 hair, eyes too small for his face], Jano [20 years, large frame, short-
3 haired, piercing brown eyes] and David [short, overweight, mouse-like,
4 scared, thick-rimmed glasses].
5 Brid: So, twatter – is it true? Is it true, then? 12 toes, ’ave ya? Ya
6 freak.
7 [Brid pushes David into the cubicle, David covers his face with his
8 lower arms.]
9 David: No . . .
1011 Brid: Jano shut door, man.
1 [Jano firmly closes the door and rests against the door. He is
2 laughing.
3 Brid punches David hard in the stomach, and struggles with David’s
4 shoes, eventually prising them off, as he forces David to sit on the
5 toilet seat. David is howling. Awful screams echo.]
6 Brid: Fucking hell (laughs) look at this Jano, look – it’s the elephant
7 man! Jesus, that’s horrible [laughs].
8 [Jano moves into the cubicle and squeals with delight. Brid and
9 Jano catch each other and run out of the toilet, their laughter echoing
20111 in the toilet while ringing out over the factory floor.
1 David pulls himself up from the seat by the door and stoops down
2 to collect his shoes and socks. As he moves out of the toilet we catch
3 a reflection of him in the mirror. We can make out the mirror image
4 of chalk marks scrawled on the back of his long grey coat ‘I am a
5 knobhead. Kick me!’
6
7 David was bullied for two years. He had a meeting with his mother, his
8 keyworker, an occupational therapist and the work supervisor. The occu-
9 pational therapist asked him if he wanted to take a holiday. He said yes.
30111 He hasn’t worked since, that was 12 years ago. I heard that David has
1 spent the last three years at home. He never leaves the house, even though
2 his Mum and sister want him to get out, to make friends. He stays in
3 bed, all day, every day.
4 For me work has always been a laugh with my cousins, my brothers,
5 our pals. Five a.m. start, breakfast in the market café at eight and back
6 in time for the punters. Lots of craic. Weekends we get off somewhere
7 different – York, Newcastle, Glasgow, Rotherham, all the different
8 markets. I am well known, always asked if I need more work. From time
9 to time I collect glasses in Mulligans which is a really cool Irish pub.
40111 A trio play rebel songs every Friday night and it is packed with regulars
1 as well as students nursing a pint or two. One Saturday night, Trevor
2 the landlord asks if anyone knows of a right wing-back who could play
3 for the pub football team. I overheard him. So did my brother Callum.
44111 ‘Our Gerry’s got a sweet right foot, you want to ask him.’ I am now a
 Gerry’s story 9

1111 regular. Scored two last match. Somewhere in all of this I got drawn into
2 People First.
3
4 ‘Dear Editor
5 I am writing on behalf of Partington People First group, as we were
6 shocked to see in your magazine that someone showed us on 1st
7 September 1988, with four people who you called mentally handi-
8 capped people. Those people were at the International Conference in
9 London where they and others from all over the world were fighting
1011 to get rid of labels like ‘mental handicap’. We feel very upset because
1 you have done the opposite to what you want. You do not seem to
2 understand that we want to be called People First and not what you
3111 put in your magazine. I have heard that these magazines go all over
4 the country and people will read it and they will still think of us like
5 that. We might as well have stopped at home and not gone to the
6 conference if people like you do not listen to us. So next time can
7 you say ‘people with learning difficulties’. IT DOES NOT COST
8 ANYTHING MORE. Thank you and I hope your next magazine will
9 be more interesting.
20111 Yours faithfully Maddie Harrison (Secretary)’
1
2 Maddie Harrison – the founder of our group. Without her, well, maybe
3 we wouldn’t have got things together. Most of the group were in a rut.
4 Day Centre. Bed. Maybe the Gateway club on Thursdays if they were
5 lucky. I used to pop into the day centre on Fridays, still do actually, to
6 have a coffee with some of my oldest friends. Well there I was, 15 years
7 ago now, and Maddie waltzes into the canteen. Her long red curly hair
8 flows all around her as she unbuttons her jacket and throws it onto the
9 back of her chair. She has been chatting with Shirley, her keyworker. She
30111 has heard about this new thing: self-advocacy. She corners me and Bob.
1 Resting her arms on the table – all DI Regan off ‘The Sweeney’ – she
2 puts her face in mine. ‘You could do this with me,’ she instructs.
3
4 ‘You stick up for yourself, Gerry, don’t you?’
5 ‘Yeah.’ [I wasn’t sure what she meant.]
6 ‘And you, Bob. You have your own flat now, don’t you?’ [Bob
7 smiles smugly, making patterns with his spoon in the coffee froth.]
8 ‘And we could get others to join. What about Denise? She could
9 do with speaking up for herself more and more. Have you heard that
40111 Doreen [Denise’s carer] won’t let Denise out to bingo anymore? Says
1 that she’s not behaving herself.’
2 ‘And what about Sophie?’ Bob asks.
3 ‘Well, she can be trouble, but she does let them know what she
44111 wants, that’s for sure.’
 10 Gerry’s story

1111 ‘I agree, Maddie. Shall we get some others together?’

2 ‘Yeah, but we’ll need some leaflets, telling folk about the group,
3 do it properly – work can make us free.’
4
5 Before long, there were 14 of us with Shirley from the centre. We would meet
6 every second Saturday of the month at the steps of the local Co-op. The
7 shoppers hurrying past with bags of rubbish would look up to us on the
8 steps. We were out of the centre, out of group homes and institutions. Only
9 the Co-op, but the first real taste of community life for some of us. Not a
1011 keyworker in sight, well, apart from Shirley. After a while, Maddie sweet-
1 talked the manager to give us a regular room in which to meet. I would work
2 a few hours at the market and then rush over to the meetings. Eventually,
3 the Co-op gave us our own key to the building. I looked after it for years.
4
5 ‘We don’t want to be called mentally handicapped. We’re just as
6 good as anyone – maybe a little bit better.’ (Maddie Palfreeman, 4th
7 International People First Conference report)
8
9 Maddie was everywhere. She travelled to Canada, London, Scotland and
20111 Wales. Sometimes I went with her. Other times someone else. We spoke
1 at conferences with other People First groups. We made pen pals with
2 people with learning difficulties in Ontario, Canada. We told students at
3 the local college about sticking up for yourself and about them having to
4 treat us with respect. We recalled the starting up of our group at confer-
5 ences to rooms full of suited men and women. And always Maddie. It meant
6 everything to her. She would complain in meetings if people were talking
7 too loudly. Jon was always chastised. He had awful sinus problems. ‘Stop
8 snorting,’ Maddie demanded. And she was quick to ensure that trivial
9 matters did not dominate the meeting. ‘Well, it’s alright you talking about
30111 Coronation Street, Asif, but what are we going to do about people calling
1 us mentally retarded?’ In many ways she ruled the group. But people were
2 not put off. We quietly admired her, I think. Asif, Jon and the rest of us
3 continued to come along. She was sticking up for us – as well as herself.
4 Anyway, many of the group had enough to worry about.
5
6 The meeting started and members of the People First Group took
7 turns to tell of their news. While there was much talk of holiday
8 plans and nights out, a number of vignettes had a more distressing
9 feel. Rachel has finally moved out of her group home. She was the
40111 only woman resident. One of the other residents had been ‘touching
1 me up. That’s how my sister’s friend Julia explained it.’ Maureen
2 hates it at her house. The staff insist on her leaving the door open
3 when she is having a bath. Matthew, too, he ‘was fiddled with’ by a
44111 guy from the end of his street. They were friends. Matthew’s social
 Gerry’s story 11

1111 worker reported it to the police. No actions were taken. Meanwhile,

2 there is still no sign of Katy. Where is she? She never misses a meeting.
3
4 As the years passed we became stronger. And we took no prisoners. After
5 a couple of years, we asked our supporter Shirley to leave. Maddie and
6 I had spoken about how Shirley wanted to make it her group. She told
7 us what we should do. What we should and shouldn’t say. She often
8 stuck up for the members of staff we criticised. Then that meeting. I was
9 in awe of Maddie. She had spoken to other members as well, got the go-
1011 ahead, but was still nervous.
1
2 ‘We want to thank you for all the help you’ve given the group, Shirley.
3111 But, we want to run our group our way now. We would like it if
4 you didn’t come anymore. This is our group and we want to run it.’
5
6 It was a lie. We still needed a supporter – but someone outside of
7 the day centre, away from services. Someone who could help us with our
8 problems, with the new service plans, with bullying staff. Not folk only
9 interested in bettering their own careers. Someone with access to a
20111 computer to type up our minutes and agendas. Luckily, Shirley left and
1 Rebecca joined. We needed people who believed in us.
2
3 Imran found an old lighter in the supporter’s car. He asked if he could
4 have it. The supporter, Dan, gave it to him with a patronising warn-
5 ing, ‘Now don’t go burning down your mother’s house, will you?!’ He
6 looked at Dan with despair and retorted, ‘I’m not fucking stupid, you
7 know.’
8
9 As our membership grew, we soon changed our venue for meetings, so
30111 Peter, Michele and their sticks could get in. Whatever happened to Peter?
1 I must ask his support worker, he often pops in the market. Meetings are
2 often a rehearsal for what we do outside. For some, being in the group
3 has allowed them to become confident enough to struggle with more
4 powerful others. Meetings are the bedrock of our being there.
5 Five years ago, I travelled with Sophie, Maddie, Lucy, Barbara and
6 Michele to a conference in Scotland. We went by train. Took the adviser
7 Rebecca with us. It was quite a journey. Sophie wasn’t happy with the
8 sandwich Rebecca had bought from the buffet car. She threw the carton
9 and her coffee at the window, covering this businessman’s papers in the
40111 opposite seat. As he was swearing at Sophie, we realised we had lost
1 Barbara. It wasn’t until Newcastle that we found her sat in first class,
2 much to the annoyance of this suit whose pleas to have his seat back
3 were being ignored! At last, we turn up at the conference and make
44111 our way to these student flats that we’re staying in. Rebecca hands us
 12 Gerry’s story

1111 our keys, points us to our rooms. I unlock my door, collapse on my bed
2 and get my head down for an hour. When I open up to see what everyone
3 else is up to, Sophie, Lucy, Barbara are still stood outside in the corridor.
4 They’d never had their own door key. We laughed it off. That first night
5 we were in the bar until 3 a.m. Support workers’ earlier demands for
6 Lucy, Babs and Sophie to take their drugs were by the by. It was our
7 night, some starting off on an unknown journey towards independence.
8 Yet, our struggles continued. They never seem to subside. Matthew was
9 telling me today that he’d finally moved into his own home: ‘On my own,
1011 my own space, my own place at my own time: just 11 years too bloody
1 late.’ He’d been asking different key workers for years and years to get
2 him out of the group home. Finally, he nagged just long enough with the
3 current worker who helped to set up the move.
4
5 The group has had enough. Maddie and an adviser Lucy traipse down
6 to Cunningham Lodge, Katy’s institution/home. Maddie demands to see
7 the manager, Dick. The duo wait. After an appropriate amount of time,
8 in the opinion of the manager, the two are called in. Dick offers tea. No,
9 replies Maddie. Coffee?
20111 ‘Why aren’t you letting Katy come to meetings?’
1 ‘Well it’s not that simple, I me . . .’
2 ‘WHY aren’t you letting Katy come to meetings?’
3 ‘Look, Maddie, I don’t want to fall out with you or with you eh . . .’
4 Lucy looks left out of the window. This is Maddie’s moment. Dick
5 continues;
6 ‘. . . If she doesn’t behave then she will not be allowed to come.’
7 ‘What has she done?’
8 ‘She is exhibiting . . . eh . . . often very challenging in her behav-
9 iour, without reason.’
30111 ‘Well, if you didn’t stop her from coming to our meetings then
1 perhaps she wouldn’t be so annoyed.’
2 ‘I reserve that right as the person who is paid to look after her.’
3 ‘She has a right to come.’
4 The exchanges continue for another 10 or so minutes. Dick offers
5 an olive branch.
6 ‘Shall we agree to disagree?’
7 Maddie takes the branch, snaps it off and swipes him firmly across
8 the face.
9 ‘We shall agree that I am right.’
40111 Katy came to the next meeting. Maddie had been ringing Cunningham
1 Lodge every night before reminding them of the meeting. A success.
2 The next meeting, Katy wasn’t there. Maddie phoned. Ill in bed,
3 we were told. Katy missed the next meeting. Maddie popped around,
44111 Katy told her she was not interested any more.
 Gerry’s story 13

1111 Charlotte missed the January meeting. And then, the next. Very unusual
2 for her. Charlotte and her housemate Christine always attend meetings and
3 have done for over 10 years. Rebecca rings up Charlotte’s house. The senior
4 house officer answers. Charlotte has been moved to a new group home six
5 miles away. It was decided that it was in her best interests. They will see
6 how she gets on and if the assessment is positive it is likely that she will
7 remain in the new home. Christine didn’t attend these meetings either.
8 Somehow, breaking the two up had wrecked long-fought plans. That was
9 because it was overlooked, the staff told us. I get Charlotte’s new home
1011 number and ring. They didn’t know about People First, it wasn’t mentioned
1 in her file. I ask the house manager if they can let her know about the dates
2 of the meetings. They ask me to post the dates. Rebecca seeks assurance
3111 that Charlotte will be brought down to the meeting. ‘If that is what
4 Charlotte wants then we shall bring her – but only if she wants to come.’
5 Well, at least they were asking her opinion, maybe they should have before.
6
7 Ricky – four days of the week, for seven years – ‘therapeutic earn-
8 ings’ of £15. Unpicking balls of string in the centre. His friend Muriel
9 lies with her head flat to the table top, snoring loudly. And then there
20111 was Ricky on the stage. Pretending to juggle, like a circus clown.
1 Concentration etched in the furrows on his brow. And around him
2 the other performers played out the background of a street party. He
3 shone. He moved to the front of the stage. He was electric. Ricky –
4 one night of his life: the centre of attention: attention that he had
5 sanctioned. What price now for a shot at peace and dignity?
6
7 Last Wednesday I rushed down to the Day Centre. Quick coffee. Then, we
8 spent ages helping each other with our aprons – Steve’s difficult to dress in
9 his wheelchair. Then June, who’s staff, bakes a cake. Mixing up the ingre-
30111 dients, adding dried fruit, whisking away, talking us through her handi-
1 work. She does it all. Always has done. We are her willing audience. We
2 wait in relative silence watching the cake rise through the glass of the oven
3 door. Rebecca asked me why I even bother – ‘Can’t cook, won’t ever be
4 allowed to bloody cook’ she mocks. I tell her – I come to see my mates.
5 Questions? Anyway, that day I get home for about 6-ish after stopping off
6 for a chat with the lads in the bus station. And my Mum is in the kitchen.
7 It’s Friday night fry-up, the full works, with chips. As she places the bacon
8 rashers in the frying pan, she turns to face me. Solemn.
9 ‘Rebecca rang, from People First.’
40111 ‘Oh, right, what did you say.’
1 ‘She asked if you knew that Maddie Harrison has died. Tuesday last.’
2 No one had said anything in the Centre. No one had rang to tell me.
3 Rebecca had heard only by chance. She lived next door to Ravi who is
44111 staff in the Centre. He had been to the funeral. It was yesterday. It had
 14 Gerry’s story

1111 been a lovely service. But not one member of People First was there. We
2 spoke about it at the following meeting. No one had been told. Not even
3 the ones who go to the Centre every day. Maddie hadn’t been to the
4 meetings for years. When they retired her from the Day Centre, I suppose
5 she retired from the group. We used to ring. Tell her about a conference
6 we had been to. About the local day centre having a ‘consultation’ day
7 which was crap, but the sandwiches were nice. About the age-old problem
8 of a member of staff not letting one of our members out of the group
9 home for the meeting. She had lost that wicked sense of humour and her
1011 anger. ‘Oh . . . I’m sorry’, she would say. Distant. Removed. Defeated?
1 And on the day of resting her body in the ground next to her mother,
2 we weren’t there. I would have been there. I would have stood by Maddie
3 throughout the day.
4
5 I’m pretty bothered by his absence. No sign of him for over three
6 months now. Tried leaving messages. His mother says she will let him
7 know, but there is a dismissive air to her promises – like she’s not
8 quite clear what this People First business is – and still no Gerry. So,
9 I leave the meeting of the group early. The group has decided: find
20111 Gerry. I walk into the market, the strong stench of fried onions from
1 the hotdog stall always fills me with nausea. Past the bootleg CDs
2 and jeans stalls, over to the shoe stall owned by Gerry’s uncle Francis.
3 ‘Hiya Francis, how are you, sir?’
4 ‘Very well. Myyyy, Rebecca, looking good, girl!’
5 ‘Thank you.’ [He eyes me up and down: blush.] ‘Have you seen
6 anything of Gerry? The word from People First is he’s too busy to
7 come down to our meetings on Saturday.’
8 [Francis emits a dirty laugh, putting his arm around me.]
9 ‘Noooo, he can have all the time off he needs, he knows that,
30111 B’Jesus he’s been knocking off early on a Saturday for yeeeears to
1 come to that group of yours.’
2 ‘I know, that’s why we miss him. So where is he going instead?’
3 ‘Gerry’s in Rochdale, my love, the outdoor market. Goes every
4 weekend now with me brother Ken. He’s in love – one of the stall-
5 holders there – Janine.’
6
7 I have left People First for the love of a good woman. Watch this space.
8
9
40111
1
2
3
44111
 Chapter 2
1111
2
‘I’d never met a vegetarian,
3 never mind a lesbian’
4
5 Colleen’s life story
6
7
8 Rebecca Lawthom with Colleen Stamford
9
1011
1
2
3111 Nowadays people can do whatever they like at whatever age they want
4 whether retraining or going to uni., this is a good thing. I sound like an
5 old crock but times have changed and my life has gone full circle in some
6 ways. I guess some of my life and my values are part of my growing up
7 and what was considered tidy and proper. . . . My Dad, I know he’s really
8 proud and my Mum has been dead now for seven years but he always,
9 always says ‘Your Mum would be so proud,’ and she certainly would
20111 because definitely I would never have gone to do nursing training. It would
1 never have entered my head to do it because I would have thought that
2 was far above me anyway.
3 When I was younger, growing up, my family were hard workers, you
4 know they had a work ethic which was very strong. And I can remember
5 then you were almost ashamed to say where you lived. Where I lived, it
6 had a very bad reputation whereas now it is quite trendy to be working
7 class, isn’t it? When I was young it definitely wasn’t so accepted. Where
8 I lived, people did work but had poorly paid jobs, either poorly paid
9 manual jobs or they didn’t work. My family was considered to be quite
30111 well off – well, relative to where we were living. Both my parents worked
1 and that was unusual – as women tended to stay at home. My Mum had
2 two jobs at the same time. She had a string of part-time jobs and was a
3 qualified seamstress. She used to do afternoons in a tailoring factory,
4 a large mill in town, but this wasn’t paid well. It was piecework so you
5 got paid for each item. The women who worked there used to have sand-
6 wiches at the machines, knee-deep in material, all sat in rows. The
7 conditions were terrible as well, a proper sweatshop it was. Nowadays,
8 it would never pass Health and Safety guidelines. When she finished there
9 in the late afternoon she would do evenings at a fish and chip shop round
40111 the corner. It meant we often got free fish and chips.
1 Unusually, because my Mum worked, the childcare was done by the
2 male side of the family. The family was me, my younger brother, my
3 Mum, Dad and my retired granddad. My Dad was a postman and did
44111 ‘earlies’ all the time so was home for lunchtime. My mother disliked
 16 Colleen’s story

1111 housework (which I am sure she passed on to me) and I can’t really
2 remember her doing any. My Dad used to do the cleaning and the cooking
3 and my Mum would manage her part-time jobs around school and stuff.
4 I can remember running after her not wanting her to go but she had to.
5 There just wasn’t any formal childcare really – you were either cared for
6 by your family or left. People would look out for each other’s kids, and
7 everybody would be out playing in the street. It was safe and nothing
8 traumatic happened – you know, accidents, abduction, knocked down,
9 etc. So, my Dad would clean and ‘do’ in the afternoon but he wouldn’t
1011 have wanted anyone to know that. I remember him once saying he would
1 do anything but he wouldn’t hang washing out in case somebody saw
2 him (laughter). He did it all because I remember my Mum, she used to
3 get poorly, she used to suffer with depression and so my Dad not only
4 did he work, he carried on working through all that. I remember him
5 doing a lot of childcare, the cooking, everything. So you know he prob-
6 ably was a New Man a bit too soon. In those days, they probably thought
7 he was off his rocker doing that, a man doing all the housework. He
8 was very quiet about it, I think he just loved me mam and would have
9 done anything for her. It didn’t bother him that she didn’t like doing
20111 housework.
1 Because both my parents worked, we had a bit more money to do
2 things with. It was unusual to go on holiday but we used to go in a
3 caravan every year to Great Yarmouth. For our holiday, my Dad had a
4 very old Austin A25 which he had hand-painted bright green. It was dead
5 embarrassing and when we went off, he got this trunk to put on the top
6 and my mother was so embarrassed because we had to drive past the
7 chip shop where she worked. I think the fact that everyone in my family
8 worked and had a good work ethic, it probably was really unusual. I
9 knew I didn’t want to work in a shop, which is what everyone ended up
30111 doing. No, and I didn’t want to do tailoring – two things for a young
1 woman to do. Those were the expectations and I wasn’t particularly bright
2 at school. I was in the O level class* but I left before I took them because
3 I daren’t do them. I didn’t pass my eleven-plus so I went to a secondary
4 modern school. I coped alright and was put in for O levels but was
5 dreading it. One of the girls in the class was going to go to secretarial
6 college – I had no desire to do it but I saw she could leave and not do
7 O levels so that’s what I decided to do. It brought the entire family a lot
8 of pride because you know I was going to Greenlands College and I was
9 really posh, you know. I’d opted out, not staying on to do O levels but
40111
1
2 * O-Levels – school qualifications taken in England and Wales usually at the age of 16.
3 A-levels, typically taken between 16–18 years of age, are qualifications often required for
44111 university entry.
 Colleen’s story 17

1111 I remember for my Mum and Dad it was the only time they ever went
2 to school. Because I went to a convent school and the headmistress, who
3 was a known tyrant, wouldn’t take my word for it that it was okay to
4 leave, and my parents had to go down.
5 But I started secretarial college at 16. I was there for a year and I
6 absolutely loved it. I learnt shorthand, typing, English, office practice. I can
7 only remember this NCR he used to talk about – no carbon required, it
8 was the first time you got them forms where you didn’t have to have a piece
9 of carbon paper. I feel like an old codger – 36 years ago. But I did enjoy
1011 it because I’d gone to a convent school and being at this place where you
1 didn’t have to stand up when teachers came in or open a door, or carry
2 their bag or carry their books. It took me months, I kept standing up all
3111 the time (laughter)! Every time somebody in authority came, up I shot.
4 We were all young women, no boys. In fact, in all my school career
5 there were no boys, except junior school, because that was mixed, but
6 secondary school was an all-girls convent school, and all-girls college and
7 in fact, when I did get my first job I was horrified at the thought of
8 having to work with men. I was easily shocked and totally embarrassed.
9 Every time they spoke to me, I just blushed to my roots. I finished secre-
20111 tarial college in about a year and then got a job easily. In those days,
1 you could pick and choose, it was easy enough to get a job. I got a job
2 in an accountants’ office but doing this one-year course filled me with
3 confidence and because of where I lived I was quite proud of myself really,
4 because I felt like I’d done alright. So I’d be catching the bus to town to
5 work and you know my girlfriends would be getting off at Burtons or
6 the market, they’d go and work in the market. I felt quite posh because
7 I’d stay on the bus. And I had to dress differently, I had to dress smart
8 and I suppose because I had done this course and I was going for inter-
9 views for jobs I was really choosy, I mean I can’t imagine what they must
30111 have thought. But anyway I chose this job and I remember . . . you know
1 you had a good choice and I got £5 a week and I got paid monthly. Very
2 posh – salaried.
3 I don’t know why I liked the job. I guess it was just having some
4 money, you know a bit of pocket money of my own, I had to pay board
5 at home but I just felt like I’d loads of money and I just loved it. I made
6 friends that I’d never . . . you know, where I lived it was rough and ready
7 I guess really and everyone did the same thing, had the same background
8 and here I was mixing with people who lived in posh parts of the city.
9 I think I spent a lot of time feeling not quite up to the mark and always
40111 feeling like I had to make an effort and probably because of that I went
1 a bit over the top with it all, I think. I can remember feeling over-dressed
2 a lot of the time. You know, new things and that’s when the obsession
3 with shoes came in and, you know, because when I was little I only ever
44111 had one pair of shoes, I had just a pair for school which had to be kept
 18 Colleen’s story

1111 tidy. So working where I was working we had a bit of kudos ’cos I had
2 a proper job, a tidy job. I stayed there and continued going to college
3 then. I went to nightschool for shorthand and typing for two or three
4 years, just getting more qualifications. In those days you used to move
5 around just to get a bit more money, you know work further up. I went
6 to be a secretary to someone as opposed to just junior, like, yes, so I just
7 moved up the ladder a bit and got a secretarial post at the hospital which
8 I liked and I stayed there for about three or four years and got married
9 while I was there.
1011 I was quite late getting married, though – when I was 18 people were
1 already getting married. I met him in a pub and it was my best friend’s
2 birthday and his birthday and we were all sort of celebrating together so
3 I met him then and sort of fell into it. I had never had a long-term
4 boyfriend at all and already you were beginning to think maybe it wasn’t
5 going to happen and then what would you do. I have to say when I got
6 the job, I always thought in the back of my mind that it didn’t really
7 matter what I did because it wouldn’t be for long, I would get married
8 and have a baby. Because that was the expectation. Once I got married
9 I went on to pay a smaller insurance stamp then because you were going
20111 to be like with your husband’s. Before marriage, I just had kind of odd
1 dates with ones, I guess, that I came into contact with. Mostly I wasn’t
2 really that bothered. I had a very, very best friend and we just used to
3 do everything together and the only times I ever went out with anyone
4 else were if we all went out together in a group. At 17 they were dating,
5 courting seriously and a lot of my friends got married at 18 or 19, got
6 pregnant even. Most of my friends were Roman Catholic. There was no
7 way they could have sex either and not be married never mind get preg-
8 nant, and so my choice of friends were getting less and less as I got older.
9 I knew one or two lads who we used to hang around with and would
30111 ask me out and I always used to say ‘no’ because I used to have more
1 fun with me mates . . . and then I thought, ‘Sod it, needs must’ and then
2 my friend had yellow jaundice and I remember saying ‘Oh go on then,’
3 and I went out with him while she had yellow jaundice and then the
4 minute she were better I ditched him. Nothing swept me off my feet and
5 I got the feeling from my family and where I lived and stuff that every-
6 body got married and eventually I would have children, you know that
7 was the plan? Certainly if you hadn’t got married by the time you were
8 20 you were definitely thinking you were going to be left on the shelf,
9 and I remember when I got pregnant at 25 I was old. My mother defi-
40111 nitely thought there was something going on . . . I got married at 20 and
1 I didn’t have Julia until I was 25 so I had been married all that time and,
2 I mean, my mother thought there was something wrong, you know,
3 thought we couldn’t have children and also you weren’t meant to use
44111 birth control because we were both Catholics.
 Colleen’s story 19

1111 I think she had either been lucky or unlucky because she’d never used
2 birth control and only got pregnant three times. So, yes, there was a lot
3 of pressure on from church and it is surprising what you take on board
4 yourself without anyone actually saying anything. You just like mini clock
5 what you see. I have to say my Mum and Dad seemed really happy and
6 although some of the families we lived near must have been completely
7 dysfunctional they were still what . . . a man and woman living at home
8 with often a lot of children. So you never thought about whether you’d
9 be happy doing that or what would happen if you didn’t.
1011 Yes, and the thoughts of not being married were worse than any thoughts
1 about having some plonker, you know. I probably wasn’t going to have
2 me pick of the crop, I used to have this feeling that I wouldn’t meet
3111 anyone, so I don’t know. I didn’t brim with confidence, I was more confi-
4 dent than when I was at school but not anywhere near like I am now.
5 When you have been brought up to, like, do certain things in a certain
6 way it is just easier if you haven’t got to reinvent the wheel. So I started
7 having children at 25 which was quite late at that time and then I stopped
8 working for about nine years. I had one at 25 and then two years later
9 and then two years later and it was when the youngest went to infant
20111 school (at 5) that work was an option. Because there was just no child-
1 care . . . I mean they were just beginning to get child minders then but
2 they were very few and far between and my mother, although retired,
3 made it perfectly clear that she wasn’t interested in providing childcare.
4 As far as she was concerned she liked the nice bits, you know of seeing
5 them, but she didn’t want to do the day-to-day stuff. I had had the chil-
6 dren and they were my responsibility. And to be honest I was happy
7 staying at home, I think that I liked doing it and I did it well and I felt
8 confident with that and I think the thought of getting a job frightened
9 me really. I had been away from the workplace then for so long and I
30111 always thought that’s what would happen.
1 I really enjoyed it though. I just got involved in their lives then, at
2 school and nursery and playgroups and fund-raising and voluntary work,
3 anything I could have done that fitted in with them and school and stuff
4 like that and I liked it, I made lots of friends so I had quite a nice life
5 with the children. I think once I got married I was sort of semi looking
6 forward to having a baby because I had gotten to the point then where
7 I didn’t like what I did, it was boring, it was the same thing and I realised
8 then that I was never going to be able to do anything else. I had gone
9 as far as I could go with those qualifications. Still people when you applied
40111 for jobs were asking did you have O and A levels and I regret, not now
1 though, but up until, say, 10 years ago, I still really regret that I didn’t
2 really have anything to put down on an application form. Oh, I had loads
3 of office type-things but when I was going back to work they weren’t as
44111 relevant then because computers had come in and it didn’t matter that
 20 Colleen’s story

1111 you could do shorthand and typing stuff . . . words per minute etc. So I
2 remember going back to college again then. I decided I was going to
3 maybe try and get a part-time job. I enrolled at college then, in Reinsford
4 to do computer studies. There were all sorts of schemes to get women
5 back off into the workplace – return to learn? The courses were free
6 because I wasn’t working and that was good and a confidence thing really.
7 You needed to know your way around a computer so that if you were
8 going to go back to work you could just develop some skills. I think I
9 would never have thought about having a career change. There were
1011 certain things and to this day I would never, ever, want to work in a
1 shop. I don’t know, that would have been the end of my life if I had had
2 to work there. I think I was shy and any type of interaction in a shop,
3 behind a bar, I would have hated anything like that. I was quite happy
4 with a machine and I felt confident with that, so I would never have
5 wanted to work in a shop.
6 When I was at home with the children, I did lots of things. With the
7 confidence thing maybe I did make a subconscious decision to work with
8 people who I felt not better than but I felt more confident with that so
9 I maybe was a bit choosy where I worked. The people I were involved
20111 in fund-raising with or for were always either elderly or learning disabil-
1 ities (18 years ago, I mean, it weren’t ‘learning disabilities’) or doing
2 voluntary work. I suppose I had a fear of always feeling not quite up to
3 scratch or maybe people might make a judgement of you. Maybe it was
4 because of being brought up where I was, I don’t know. If you had no
5 expectations of yourself you could easily have been left out and done
6 nothing. Very hard to break.
7 I think even my mother once said to me I was too big for my boots.
8 She would have been happy, I think, if I had worked in a shop because
9 that’s what she always wanted to do. She got that job in the fish shop
30111 and she was made up because she felt it was a bit flashier than the
1 tailoring. And the fact that we got fish and chips free I suppose was
2 another bonus so it is funny, isn’t it, what you think is a good job. Once
3 or twice I thought . . . I did used to think I was a bit of a cut above. I
4 hope I wasn’t a snob but I guess I wanted to think I was better than
5 some. I also did some fostering, before I went back to work . . . it was
6 when the youngest of my kids was three, I did that for two years. I
7 remember I were in a panic about what was I going to do when they
8 went to school, so I got involved with the Catholic Welfare Society through
9 church – they needed homes for these babies to go to while they were
40111 waiting to be adopted, so I got involved with that and did that for two
1 or three years and I loved it, absolutely loved it. It just got a bit painful
2 giving them back and the other thing was my own children used to get
3 upset because they liked them, they got attached to them. I had one very
44111 traumatic time of having to give a baby to its adoptive parents, having
 Colleen’s story 21

1111 convinced myself they wouldn’t be able to place her because she was
2 poorly. I think I decided then that that were enough and I think I realised
3 I were just trying to fulfil a need in me or even to stay at home, you
4 know. I didn’t want any more babies myself so I just felt confident with
5 doing that . . . it was just the fear of training, I think.
6 I think it was when the youngest went to school that I decided I should
7 really get proper employment. It was the School of Dentistry in Middletown
8 University and I saw a job advertised, term time only, so I got a job there
9 so I didn’t have to start while I dropped the kids off at school and I could
1011 leave in time to pick them up. It was perfect in school holidays. My mother
1 thought I was mad. She couldn’t understand why . . . I didn’t really have
2 to go back for the money, which was a good thing because my ex-husband
3111 worked hard so we were alright really. It were just for myself, I needed to
4 do something for myself, but that concept was lost on my Mum because
5 you didn’t do that sort of thing. What more could you possibly want, you
6 know, so I think it was just a thing of being Danny’s mum, Rosa’s mum,
7 was sick of being someone’s mum or someone’s wife, I just needed to
8 see if I could do something away from there where no one knew you.
9 You could be a new person.
20111 I wasn’t bothered about talking about family or what I did at home
1 so I just had like another little life. I enjoyed it, I enjoyed it too much
2 apparently because I split up with my husband and I think it was going
3 back to work that really did it, I think, realising what a big mistake it
4 all was, really scary. Me working didn’t interfere with him at all because
5 he didn’t have to do anything and it wasn’t equal. I got upset then because
6 although it was my choice to do it, obviously I wasn’t at home as much,
7 and at that point I used to do a lot of running, and I was still trying to
8 fit that in. Sometimes, I would be maybe getting into work a bit later so
9 that I could go for a run, so I would expect him to pick the kids up from
30111 school, so he would have to finish early which he could because he had
1 his own business. But he didn’t want to, he couldn’t understand why I
2 now wanted to run as well as work. But then I saw the light and I am
3 thinking, ‘Oh hang on a minute, why should I work and do the house-
4 work, and do the shopping and do the ironing and do everything?’ and
5 all he had to do was go out to work.
6 He did absolutely nothing and never did even when the children were
7 young. Typical sort of old-fashioned relationship where the women did
8 . . . you know he never bathed them and sometimes would get upset
9 because they would never want him to take them to bed. You just drop
40111 into these ways by accident. It is only when you see a different alterna-
1 tive lifestyle, when you hear other people talking, you think it were wrong
2 and I felt dissatisfied.
3 It brought about a lot of changes really, it felt like it were a good thing
44111 but it threw my ex-husband into complete confusion as well because I’d
 22 Colleen’s story

1111 changed. I’d gone from being this quiet, you know, fall in with anyone,
2 do anything for anyone, always like putting myself out to the detriment
3 of myself because I didn’t like to say no and all of a sudden, I was ques-
4 tioning things and actually having an opinion about things. That is when
5 things started on the downward spiral. I realised then that in all the time
6 we’d been married, we had never really spoken about anything, we had
7 just got on with our separate jobs if you like. I’d look after the kids and
8 the house and he’d gone out to work and I’d been happy with that, I
9 didn’t know anything else. If I had never have got that little job I would
1011 have probably been there until the children left home I think, because I
1 remember even when Rosa went to school feeling completely panic struck
2 because I just didn’t know what I was going to do any more. Yes, the
3 husband wasn’t enough because I realised then that I didn’t love him like
4 that, not enough to want to be there. You just sort of got on with it
5 and hoped it were going to be a long way off. We had everything – our
6 own house which me mam and dad had never done (you know council
7 houses were the norm really) so I had made it in their eyes. Yes and that
8 were it, your life stopped then, you’d no need to bother doing anything
9 else. The new job that I took on made me feel so confident, I think just
20111 meeting other people made a difference. Where I worked before I suppose
1 I always just thought like I was mediocre, everything I did, I wasn’t a
2 sparkling personality, I wasn’t particularly attractive. There was nothing
3 about me that would have stood out from anyone else, but when I started
4 this little job they had an older woman working and she was retiring.
5 She used to use a typewriter for everything so I came along, could use a
6 computer and they all thought I was absolutely wonderful. They were
7 getting work back within half an hour whereas she had like a work basket
8 full of stuff. People were so complimentary, they were so nice, a very
9 alternative group of people that I’d ever met, they were all very different.
30111 And just to be told that you were good at something was really nice, I
1 don’t think I had ever been told that before. People didn’t give feedback
2 . . . it’s different now than it was then, but I don’t think we do that very
3 well, do we? We are very good at telling somebody when they are doing
4 things wrong.
5 But I think that is the first time I remember anyone ever saying, you
6 know, being pleased with something I’d done. I used to seek that out and
7 I used to do things so that people would like me. Some sort of sad person,
8 but I did. Children, they grow like flowers if we give them lots and lots
9 of praise as opposed to being knocked down. I had never met such a nice
40111 group of people, and I started going out for meals and things and the
1 conversation, I used to think they were all so clever, I daren’t speak for
2 a long time. I had been at home, and they were talking about all different
3 sorts of things and where they had been on holiday and it was the first
44111 time I had met a vegetarian (laughter). I wasn’t quite sure what it was.
 Colleen’s story 23

1111 It was lovely when I was at work but hard at home. So I really liked
2 going to work and often went in times when I didn’t need, just to be
3 there because I liked it. I felt confident there and it was different from
4 being at home. After four years, I went full-time then and that was a bit
5 of a nightmare with childcare. He didn’t say a right lot, he just had to
6 do it, but you know things weren’t good then at home, things were begin-
7 ning to break down already and he could notice it by then as well.
8 But, I didn’t tell anyone. We never talked, my ex-husband and I didn’t
9 talk about it either. I never said I wasn’t happy, he never said he wasn’t
1011 happy. And I guess it just got worse and worse. I kept hoping that he’d
1 leave or find somebody else. But sadly he didn’t do that. When the chil-
2 dren were around it was okay and I guess they were still only young,
3111 Rosa was only 9 and I can remember feeling really panicky all the time
4 and having panic attacks. Just thinking all the time what would I do. The
5 fact that they were still young, I felt that imminent that they were all
6 going to leave and leave me there, leave me behind, those sorts of feeling,
7 it was awful but I don’t remember saying anything to anyone.
8 And so eventually I took the bull by the horns and decided to do some-
9 thing. You know it just wasn’t the thing to do, but I had met someone
20111 else as well which added all to it, I guess, and I panicked then. What
1 should I do? Should I let the opportunity go and hope that it would go
2 away? It was complicated by the fact that it was a woman and not a
3 man and I felt because of that, I couldn’t take the children with me
4 because I thought that would be too much for them.
5 And I didn’t know what was going on myself, I’d only just met a vege-
6 tarian, I’d never met a lesbian (laughter). I just thought it would be better
7 if they could stay where they were happy. Even now it is really painful
8 to think about. I think I must have just had some sort of, lost like track
9 and blocked it all out, I don’t know, I spent days, I lost weight, I couldn’t
30111 eat anything. It wasn’t the done thing to leave. I did try to tell my mother
1 at that point that I was really unhappy and say that I didn’t know what
2 I was going to do. I had said that I was going to move out into the spare
3 room or share with one of the kids and I remember her saying ‘Well,
4 he’s not going to stand for that’ as I was breaking my heart and I thought,
5 well, whatever I do, I am just going to have to just do it.
6 I suppose it made me stronger and I realised that maybe I could do
7 things and I suppose the way I’ve rationalised it now is I think at the
8 time I did the best I could in the circumstances. I’ve stopped feeling guilty.
9 I went and lived with the person who is now my partner in Middletown
40111 and fortunately because she had a really different background from me,
1 although her family are working class. Well, she thinks her family are
2 working class – I suspect that if she was working class I must have been
3 the under class (laughter) or she must have been upper working class.
44111 She had had a really good education and was really encouraging. I had
 24 Colleen’s story

1111 a really nice job in Middletown where I met lots of nice people and again
2 met people from different places. It just made me feel unfulfilled in a way,
3 when you see people getting all these nice things, and really angry almost
4 for not doing it, probably angry with myself. Prepared to settle for so
5 little or that women were, you know, when I was younger.
6 I went through a period when I was unhappy then at work, felt like I
7 needed a change but didn’t think there was any point in changing because
8 I would have just done another office job. I had gone to college to do
9 an A level to see if I could do it because I had never done O levels or
1011 A levels and while I was there everyone there was doing it to gain access
1 into higher education. Somebody just said they were going to do nursing
2 or midwifery. We got chatting and I ended up going on an open day with
3 them for nursing. I just sat there and thought ‘Oh, I could do that’ and
4 decided to. So I chatted it over with my partner who was really, really
5 supportive and really pleased that I had made the decision to do that.
6 I was 46 at the time and chose to do learning disabilities because when
7 the children were young I did voluntary work. So I chose to do that
8 because I felt confident again in that area. I daren’t be too daring so I
9 still felt like I needed to choose something that would be safe. I was glad
20111 I had and I just loved it, I absolutely loved the course. The whole student
1 thing was brilliant, I really, really enjoyed it and was really pleased that
2 I could actually do it, with a lot of support but, you know, complete the
3 academic side. I knew I’d have no problem with the practical side of it.
4 With the academic side I was pleasantly surprised. I used to enjoy it, not
5 the handing in bit and waiting for the marks, I didn’t like that, but I do
6 remember being over-confident.
7 You know, up until I was about 39 even, I had lived in a really closed
8 world, although it was slightly different from when we moved out and
9 were married, it was just the same, but in a different house, with a bit
30111 more money, but still women were doing that sort of thing. And being
1 held back in a way from ever reaching the potential and expecting so
2 little of themselves as well. I think because a lot of women stay at home,
3 no importance is placed on that role at all. You know, it is a job basi-
4 cally, a 24-hour, 7-day-a-week job and very little importance is placed on
5 that. If you had to pay someone to stay at home to look after children
6 it would cost a fortune. Whatever you do is on top of, anything extra I
7 did was on top of everything else I had to do, never in place of anything.
8 It is still like that to some extent, still women do exactly the same thing,
9 they are just under a different guise now. If the husband manages to pick
40111 them up a couple of times from the childminder or something. I work
1 with women who do it, who do a job, arranging the childcare and the
2 shopping. I am sure a lot of women think they have come a long way.
3 The childcare has improved and that is about it, I think. I think we still
44111 do as much. Whether that will ever change, whether ever anyone will
 Colleen’s story 25

1111 ever think it is a really wonderful job that women do I don’t know.
2 Whereas when men stay at home to look after the children as a house-
3 husband permanently or whatever, everyone thinks that is absolutely
4 wonderful and will talk about it and how they made a cake and he baked
5 and a woman will do that day in and day out and it is just not even
6 referred to.
7 My job has come full circle back now. Having worked for a couple of
8 years with adults with a challenging need, having qualified, I then got a
9 job working with children in a respite centre and I just absolutely love
1011 it, you are dealing with family dynamics. Having come from the back-
1 ground I have come from, it is almost like you don’t have to go to the
2 North Pole to know it is cold, but I think as a mature student and now
3111 working I think I feel I have got a lot more to offer than someone straight
4 out of school. Because when you are dealing with families you just need
5 to be so aware of what is going on other than what you can see, you
6 know, that it is not always visible, is it?
7 I am so happy now though. I got an advanced diploma and then last
8 year I did the higher degree and I got 2.1 which I was very pleased with.
9 I couldn’t have done it without a lot of support though. I think the easy
20111 side of it is actually looking after the children. I think the difficult side
1 of it is dealing with the family dynamics and what is going on in the
2 family and you know . . . I don’t know, communication with everyone
3 and information sharing. It is interesting, isn’t it, that one of the things
4 I said was that I didn’t feel good at interaction so earlier I picked jobs
5 purposefully to avoid that contact. I have ended up now in a job which
6 has huge amounts of that and more of that than anything else. Actually
7 I am finding out that I like it. I think that just came about with training,
8 I mean, I used to be petrified going on placements. It is surprising how
9 it has come full circle and I hadn’t realised until talking about it that the
30111 thing I like doing the most, like being around children and babies . . . I’ve
1 ended up working with that. Yes, whether it is an unconscious or a
2 conscious choice I have ended up doing it.
3
4
5
6
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9
40111
1
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44111
 Chapter 3
1111
2
The death story of David Hope
3
4 Michele Moore
5
6
7
8
9
1011
1
2
3 November
4
I sat in the car waiting for a personal assistant to leave before it would
5
be convenient to be admitted to meet David. A mutual acquaintance had
6
asked me to get in touch with him, explaining ‘he broke his neck in a
7
8 diving accident. He’s depressed. He hates being paralysed and wants to
9 die. Do you think you could help him or help his mum? Just find out if
20111 there’s anything you could do? He talks about suicide all the time. No
1 one knows what’s wrong with him.’
2 There had been a time when I had come to know a great deal about
3 the lives of men with spinal cord injury. I had been part of a team inter-
4 viewing one in four patients discharged from the National Spinal Injuries
5 Unit at Stoke Mandeville Hospital (Oliver et al., 1988). When the project
6 began it was taken for granted that survival after spinal cord injury
7 depended on the personality of the injured person. Extrovert sportsmen,
8 who break their necks in heroic feats, it was assumed would overcome
9 the practicalities of living with paralysis better than quiet types who tripped
30111 over their own carpets. The research had shown there could be no mistake
1 about it: survival after spinal cord injury depended very little on the
2 injured person. Outcomes are, in fact, determined almost entirely by what
3 happens to the person following injury. I was sure I needed to know not
4 what was wrong with David, but what was wrong with his circumstances
5 and what could be done to change these for the better.
6 I think I made up my mind what was wrong before I was even out of
7 the car. I knew him to be about my own age, yet he was living with his
8 Mum and Dad in the three-bedroom semi of his childhood. He didn’t
9 have his own accessible front door and his Mum, Sheila, let me in. She
40111 showed me through to an extension that took up most of what had once
1 been the back garden and I knew that if I was confined to living in a
2 one-room extension on the back of my Mum and Dad’s house without
3 even the facility to let my own guests in and out, then I’d be wanting to
44111 commit suicide too. His room was large and airy and dominated by a
 David’s story 27

1111 hospital bed. He shared it with a blue budgerigar, some posters of half-
2 naked girls, various hoists and an assortment of medical equipment.
3 It was there that David spent most of his days since he’d broken his
4 neck nine years earlier and it was there that he had fixed on the idea of
5 committing suicide.
6 He was sitting in a wheelchair between the bed and the wall. He didn’t
7 look at me, said ‘It’s nice of you to come’, but reminded me he hadn’t
8 wanted to meet. He’d gone along with the idea because it might help his
9 Mum. He said he probably wouldn’t say anything. He had no reason to
1011 trust me and people he’d trusted in the past always let him down. I told
1 him I wasn’t sure why I was there. I had no professional brief and had
2 come along only because various mutual acquaintances were intent on
3111 getting us together. I did tell him I had talked to a lot of men with spinal
4 injury, enough to know it wasn’t inevitable that he should lead a life that
5 got him down as much as his apparently did.
6 He stayed unapproachable. I couldn’t face getting straight back in the
7 car and played for time. ‘Let me sit here a while. You don’t have to talk.’
8 The only reason he let me stay was because he noticed I was wearing a
9 short skirt. I knew, because he lifted his eyes from the carpet to my knees.
20111 I was acutely self-conscious but had to hope it was a fair enough exchange.
1 Eventually he said, ‘I’m pathetic. People haunt me. I think all the time
2 that I can’t see a way out. There’s not much point you being here.’ I
3 asked him what had happened.
4 Gradually he started to talk. He said he thought all the time of suicide,
5 planning ways to do away with himself given the problem of his high
6 level of physical incapacity. Starving was his preferred option but he could
7 not bear the thought of being force-fed. Throwing himself under a car or
8 freezing to death would also be possible but implicated other people too
9 much. Twenty minutes later I thought ‘God, he really is talking. I should
30111 be taping’, but he wouldn’t let me. ‘I don’t trust anyone,’ he said. ‘I don’t
1 trust you.’
2 But he carried on. He told about the accident in a holiday hotspot
3 where he broke his neck showing off, diving drunk into a swimming pool.
4 His insurance company flew him to a specialist unit back in England. Ten
5 months later he was discharged to a local residential hospital for war
6 pensioners while an extension was built so that he could be sent to live
7 behind his mother’s kitchen.
8 He said he was quite cheerful for the first couple of years. He thought
9 he might get back the use of his arms. But slowly the enormity of what
40111 had happened began to sink in. A few months after leaving the place he
1 called ‘the old people’s home’, ‘trouble began’. His relationship with his
2 girlfriend came to an end he’d long seen coming. A spinal injured friend
3 he had met in hospital committed suicide. He began to comprehend the
44111 undoubted permanence of paralysis ‘from the chin down’. He developed
 28 David’s story

1111 a nauseating impression of the weight of his head. He was disturbed by

2 a sensation that his head hovered around in the ether. Confusion swamped
3 his mind, making him incoherent and giving him a blinding headache.
4 His thoughts were ‘speeding, saying words round in my head’. He was
5 muddled, powerless, growing terrified and not able to discuss his anguish
6 with anyone at all. Everyone around him was thinking ‘The worst is over,
7 he’s home now.’ He had realised that worse was yet to come.
8 He didn’t want to complain so sat in the garden where people left him
9 alone, thinking he was enjoying peace and sun. But he was in turmoil.
1011 He said he was lonely, miserable and in immense pain. He sat in the sun
1 hour after hour, day after day, until his face and neck were so badly
2 burned that the skin blistered, oozed and smelled of sulphur. He said he
3 was trying to burn his face away. He thought if he could change his face
4 then maybe he could summon the strength to change his mind.
5 He realised he was losing a grip on things and was panic-stricken. He
6 dreaded visits from his mates who he said lost respect for him. He avoided
7 conversation and felt unspeakably tired. He demanded sleeping tablets,
8 mixed with alcopops and super-strength lager, always shocking, intensely
9 shocked and petrified. He was admitted to a psychiatric hospital. ‘But not
20111 with the spinal injury, mate,’ he said. ‘It wasn’t breaking my neck that
1 made me break down.’
2 He described admission to hospital as a brutal and terrifying experi-
3 ence. He had been drunk, protesting, shouting and thrashing through
4 spasms, convinced the ambulance men were carrying only his head on
5 their stretcher. He thought his parents would refuse to have him back
6 home and insisted on staying only long enough to have his sleeping medica-
7 tion stabilised. People told him he was selfish ‘for not staying long enough
8 to get properly cured’. He’d spent the years since then trying not to let
9 people have reason to think he should be sectioned. Ever since, he was
30111 threatened with sectioning whenever his behaviour pushed the limits of
1 other people’s tolerance – which, admittedly, was often.
2 He alternated between periods of deep, silent depression and uncon-
3 trollable, aggressive, often drunken, outbursts. He was ashamed of showing
4 no gratitude towards those who provided his physical care, and humili-
5 ated by total dependence on his mother. He said that every night, about
6 an hour after his medication kicked in, he found himself apologising to
7 her whether or not she was in the room. Profusely apologising, over and
8 over, promising to try not to shout at her tomorrow. He wanted to give
9 and receive affection but said ‘I can only be nice when I’m relaxed and
40111 out of pain.’
1 After the shock of the disclosure I grasped two things: first, his situa-
2 tion was a socially constructed disaster being played out again and again
3 in the lives of young spinal injured men, and second he had just called
44111 me ‘mate’.
 David’s story 29

1111 I ploughed on, asking him to tell me the things he most wanted to be
2 different. He was barely audible. ‘I want to be sound in the head. I want
3 to be relaxed, able to make eye contact with people. I want the pain in
4 my eye to stop. I want to be able to make relationships with people and
5 to have visitors. I want a girlfriend. I can’t see that any of it is possible.’
6 He stopped and stared at the floor. There was heavy silence. I said some-
7 thing inadequate about his decision to talk being a brave one. He never
8 once went near ‘wanting a mended neck’.
9 He was choked and couldn’t talk, so then I talked. I told him about
1011 people I knew with similar impairments who had independent lives and
1 fulfilling relationships. I tried to say, ‘There is another way of looking at
2 what’s happening to you – it’s not about your spinal injury and what
3111 you can’t do, it’s about everyone else and what they can do to make a
4 difference.’ ‘I can’t see it,’ he said. ‘I can’t see there could ever be any
5 change.’ Somehow we drifted into a conversation about personal power
6 and avoiding self-defeating beliefs and gradually he began to articulate
7 changes he longed for. He’d been talking for a long time when we realised
8 he had focused on three specific things he was saying might help him
9 start to get his life back:
20111
1 1. to get rid of a pain in his eye
2 2. to get his printer fixed
3 3. to have a better relationship with his Mum.
4
5 Once David noticed these difficulties were all surmountable he couldn’t
6 think of anything else. To get rid of the pain in his eye he decided he
7 would ask his GP for a second opinion. He wanted the printer fixed
8 because he wanted to write about the way he was feeling and he had
9 hundreds of things he wanted to say. He struggled on ways of improving
30111 his relationship with his mother and finally settled on trying to say one
1 nice thing to her over the coming week when he was not in a drug-
2 induced state. That was my idea. He’d kept on and on asking ‘Can you
3 help me think of something?’ It was the only do-able thing I could come
4 up with.
5 Before I left, he asked if we could keep talking. He was worried that
6 meeting meant a 500-mile round trip for me. He kept checking whether
7 I wanted to bother with him. I mistrusted my courage, but I had incurred
8 an inescapable compulsion to somehow support him. We agreed to stay
9 in touch by letter and phone and to meet again in a few months’ time.
40111 He expressly said, ‘If I don’t ring, you will ring me, won’t you?’ So I did.
1 I wrote, and we spoke many times on the phone after that. He said he
2 was thinking so much he was becoming less able to speak. He was thinking
3 constantly about change and this plunged him further into the depths of
44111 despair than ever before. He was worried about causing me too much
 30 David’s story

1111 trouble. I was very afraid. I had known when I first agreed to meet him
2 that a dangerous cocktail of uncertain personal, professional and ethical
3 boundaries would be shaken. Now I was gravely implicated in his life
4 and desolation because I had pursued, and then become part of, his story.
5
6
January
7
8 The next time we met he was naked and lying in bed on a rubber cushion.
9 His body brace was bruising his back and ribs and without it he had to
1011 lie flat on his back. He had a raw, draining bedsore and redness around
1 the sore causing serious concern. He could not get pressure off the sore
2 without using the brace. He was cold but having copious, drenching sweats
3 for which no explanation was apparently forthcoming. His eye pain was
4 intermittent, often excruciating, but the GP found nothing amiss. His face
5 showed exhaustion, resignation and agony. ‘It’s impossible, mate,’ he said.
6 But we managed to talk again, and later on he said getting a new body
7 brace could help things improve. He decided to insist on his Mum calling
8 the GP in to get the ball rolling. She was hesitant, afraid of taking up
9 too much of the doctor’s time.
20111 He asked about independent living. ‘Do people in this state really
1 manage? Are there ways of trying it out, perhaps short-term, on a trial
2 basis?’ I resolved to find out. We agreed his top priority would have to
3 be to sort the body brace because his skin would break down without it.
4 And then he mentioned that the printer still wasn’t fixed. He didn’t want
5 to hassle his brother but agreed he would have to ask him again.
6 Lying prostrate, looking ill and in obvious discomfort, he said he had
7 been thinking about trying a week of living on his own. His parents were
8 due to go on holiday and he wondered if he could try staying at home
9 without them. Otherwise he would be admitted back to the old people’s
30111 hospital while they were away and the thought of it gave him nightmares.
1 He wondered whether it would be possible to bring in a support team
2 that would make it possible for him to live independently of his parents
3 in his own home for a week or two. He said he was obsessed with the
4 idea of spending a week on his own at home. His immense personal
5 strength, which meant he was willing to try to forge change in the face
6 of so much adversity, bound me to try to help him to make this happen.
7
8
February
9
40111 It turned out that a specialist agency would provide live-in personal assis-
1 tants to cover the support gaps that would arise when David’s Mum and
2 Dad went away. He had warned his parents that he wanted me to find
3 out what was possible. I offered to talk with them, to avoid getting wires
44111 crossed or doing anything they were unhappy about, but they didn’t take
 David’s story 31

1111 this up. A couple of weeks after booking the support, David rang me to
2 say his Mum and Dad wouldn’t agree to having assistants in the house
3 after all. They wanted him to be readmitted to the old people’s hospital
4 because they couldn’t face the thought of strangers staying in their house.
5 He said he couldn’t do anything without his parents on side. They were
6 afraid that trying out new support arrangements could jeopardise their
7 existing provision. He was disappointed and angry.
8 His mother had dialled the call for him and I heard him force her to
9 pick up the extension and talk to me herself while he listened in. I didn’t
1011 particularly want to get into a confrontation with his mother but he
1 implored me to speak to her. I was unnerved, saying: ‘David, make sure
2 I’m saying what you think I should be saying. Stop me if I’ve got some-
3111 thing wrong . . .’ At first his mother didn’t say anything. Then she asked
4 in a clipped, quiet but infuriated tone what I thought I was doing stir-
5 ring up ideas about change in David’s mind, intruding in their lives and
6 making everything worse than before he’d met me.
7 There was hardly a single moment during the time of my relationship
8 with David when I had clear insight into what I thought I was doing.
9 Once again now I was wading in, out of my depth, hoping for the best
20111 outcome for both of them. My only certainty was that the responses
1 forming in my mind stemmed from the unshakeable belief that this man’s
2 life should not be miserable because other people were making their
3 support difficulties a reason for his oppression. I had nothing exact in
4 mind, but was desperate to keep open some level of productive dialogue
5 about the impact of restrictions in David’s life.
6 I heard myself say that David was very, very unhappy. He wanted to
7 change things and had told me he wanted to live an independent life. I
8 told his Mum he felt he was ruining her life and wanted her to be free
9 of him. He didn’t say a word so I carried on. Staying at home while his
30111 parents were away would give him a small space in which to see what
1 he could cope with and try out living with different kinds of support in
2 place. ‘Yes,’ she said, ‘I know the old people’s home is not great but it
3 doesn’t do him any actual harm [her emphasis]. He only lies in a bed
4 anyway.’
5 He was listening. His sense of hurt and condemnation was acute. I
6 ventured to say he should have a better life than that. A better two weeks
7 if possible. She said he wouldn’t cope. David was audibly upset and
8 swearing at her. I told her I thought he could try. ‘He has got what it
9 takes to live his own life. He’s warm and funny and strong and opin-
40111 ionated, he could do it.’ ‘We’ve said it all before,’ she replied. ‘At the last
1 minute he won’t go through with it. Like the time when he went into the
2 mental hospital. He only let them sort out his drugs and then he wouldn’t
3 stay any more.’ By now David was irate. I had nothing dependable
44111 to say.
 32 David’s story

1111 I tried to put across a gut belief that he now wanted things to change
2 and that he trusted me. I was absolutely certain I trusted him. All the
3 time I was asking David to back me up or put me straight, saying, ‘David,
4 listen to what I’m saying to your Mum, you must tell us if I’m getting it
5 wrong,’ and he kept saying ‘Just tell her, mate, please tell her.’ I tried to
6 explain it takes a good ten years to come to terms with living with spinal
7 cord injury. I thought he was having a very tough time and living an
8 extraordinary life.
9 She was outraged: ‘What do you mean an extraordinary life?’ ‘Well,
1011 it’s not a life like many other blokes of his age lead. It’s not like his
1 brothers live. He never was the sort of person who would have chosen
2 to live at home with his parents. He has attitude and audacity in his eyes.
3 That’s why he always has a number one haircut. That’s why home care
4 attendants fall head over heels for him. He’s defiant and stroppy. He never
5 was going to be a mummy’s boy. He should have his own life and you
6 should have yours. He knows what he puts you through. He wants to
7 give you and Michael your lives back. Sometimes he’s cross and loud-
8 mouthed and cruel, people are tired, they don’t always find ways of saying
9 things, but he knows how much you do for him . . . he can’t tell you
20111 . . .’ and then I heard David’s tremulous breathing and thought ‘Crikey
1 I have really gone too far here.’
2 There was unforgettable, empty silence. After a while I tried vaguely to
3 fill it, attempting to articulate a notion of advocacy and to explain it as
4 being different from professional intervention. I acknowledged feeling
5 myself to be completely on David’s side but argued this didn’t mean I was
6 not on Sheila’s side too. That was why I had wanted to talk to her much
7 earlier on. She conceded – reluctantly – that David had no other advocate.
8 But she insisted she had to protect her 30 days a year when she could
9 absolutely rely on David being in the old people’s home. She repeated
30111 the point about ‘He stays in bed and does nothing anyway. At least we
1 know he’s looked after there,’ and said she didn’t want to talk about it any-
2 more. She put down her phone and David said, ‘I’d better go, mate. Ring
3 me again.’ His Mum disconnected the call. I burst into tears at my desk,
4 realising that when David was in a fight like that there wasn’t a thing he
5 could himself do to get out of the way. If I phoned back he couldn’t answer.
6 A week later he had another call put through. He said the row had
7 gone on and his Mum and Dad were adamant they would not have
8 strangers staying in the house. He asked for information about a Trust
9 I was involved in that enables disabled people to live independently
40111 with direct payments and 24-hour personal assistance. He said: ‘If
1 you could manage to send that then I can at least try to believe that an
2 independent future might be possible.’
3 But a real block remained. His parents steadfastly refused to let him
44111 try living independently at home for the two weeks when they would
 David’s story 33

1111 be away on holiday. We talked about different ways of trying out

2 independent living. Sheila came on to the phone and told me not to
3 sort anything out. ‘Better not then, mate,’ said David. Sheila disconnected
4 the call.
5
6
March
7
8 In due course David was sent to the old people’s hospital while his parents
9 went on holiday. I went to see him there. It was a small Victorian commu-
1011 nity hospital. A couple of bewildered old men sat nodding on benches in
1 the entrance hall. The silent, tiled corridors were empty. It was without
2 doubt an institution specialising in the business of certain social death
3111 (Miller and Gwynne, 1972).
4 David was in a sunny, single room looking at the ceiling. He had been
5 in bed all week and would stay there for the entire fortnight. His body
6 was covered with a white sheet. There was no one around. I could not
7 believe this clinical and isolated care for elderly and bewildered people
8 was the best respite arrangement that could be provided for such a young
9 and vibrant person. I pulled a chair close to his bed, picked up his
20111 fingers and held tightly on to his hand. I was shocked, exhausted from
1 the journey and trying not cave in to an overwhelming sense of his personal
2 tragedy. I was trying hard not to let him see me cry. A disembodied voice
3 from the far end of the bed said: ‘The only way I’ll know that you’re
4 there, mate, is if you touch my face.’ And so I touched his face and it
5 was for us both a fatal act of human contact because the boundaries of
6 our connection were then intimately and radically changed.
7 I remember the long, hot afternoon. David talked almost without stop-
8 ping. At 6 o’clock visitors were turned out. I returned at an appointed
9 hour for a strange and humid night of listening on into the very small
30111 hours. In the darkness, David wanted me to fix my hand on his face and
1 then, for the first time since I had known him, he completely relaxed. He
2 closed his eyes and started to breathe more slowly, talking, quietly talking
3 and asking questions.
4 He made me tell him over and over again about the lives of other
5 disabled people I know who live independently. He wanted to know about
6 their houses, their jobs, their children, their gardens, their everyday jour-
7 neys, how did they get their shopping, who chose the meals, the television
8 programmes they watch, the time they have a bath, what about the sleeping
9 arrangements? He said that more than anything he wanted to live on
40111 his own and to create a life of his own. He said he wanted a partner
1 who wasn’t responsible for his physical care. He wanted children. He said
2 he longed to hold his nieces and nephews but his brothers and their
3 wives could never trust him in case their children fell off his lap. He was
44111 taken aback by the idea that the children would find their own ways of
 34 David’s story

1111 cuddling whoever they wanted to cuddle. He asked whether he could have
2 children. He asked whether he could adopt.
3 He refused his night-time sleeping draught. He insisted on darkness. He
4 asked so many questions, in which I recognised myself and my friends.
5 If he had asked these questions before, they had been interpreted as signs
6 that he wasn’t adjusting, wasn’t facing up to his injury. The questions
7 that I recognised as the authentic concerns of people our age were denied
8 an existence in the life of a person with a C4 spinal cord injury. He fell
9 asleep in a kind of happiness, having conjured up a picture of an inde-
1011 pendent future with the girl of his dreams and an adopted Chinese baby
1 girl. I crept out, drained and disoriented.
2 The next morning he was pitched back into black and certain despair.
3 He wanted too much. He couldn’t wait. Until I began to tell him about
4 other disabled people’s lives he hadn’t realised what he was missing. I
5 might be giving him false hope. Did I realise the magnitude of his humili-
6 ation and shame? Did I comprehend the despair he felt over the enforced
7 bodily intimacy his personal care needs imposed upon his mother? He
8 needed an erection for his catheter to fit properly but nurses laughed at
9 him and said they weren’t there to have sex with every Tom, Dick and
20111 Harry. If it didn’t fit properly then there would be piss everywhere and
1 nurses shouting at him about having to change sheets, and more often
2 than not he would be put to bed for the rest of the day if that happened.
3 Did I think his father knew what his mother went through every day?
4 Of course not. She was silent. She couldn’t bear to tell anyone the reality
5 of their mutual wretchedness. David would be sectioned if he talked of
6 this shared degradation because his mother would deny it. Did I know
7 this sort of collusion went on? Did I? Did anybody know? Could social
8 services departments comprehend the real reason why he so wanted his
9 own place and independent personal assistance?
30111 ‘She does it out of love,’ he said. ‘But if that’s how she’s got to go
1 on I would rather be dead.’ Above all, he wanted to protect the dignity
2 and reputation of his mother. His injury was permanently transformed
3 there and then in my mind and had nothing further to do with spinal
4 lesion.
5 He was passionate and angry and upset. He felt himself vindicated in
6 his belief that things had gone too far for adequate change to be possible.
7 He understood that lack of attention to the social origins of his despair
8 had nailed him permanently to a future characterised by humiliation and
9 indignity, not only for himself but also for his mother. Could change be
40111 effected? It was intensely necessary, but he doubted it. I had brought him
1 some meaningless blue irises. I put them in a jar, left him a tape that
2 wouldn’t be played unless someone called by, drove home shaking. He
3 stayed exactly where he was for the next two weeks, looking at the ceiling,
44111 tears streaked across his ears, head on a sodden pillow.
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