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Researching Life Stories
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:
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.
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.
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.
Researching Life Stories
Method, theory and analysis
4 in a biographical age
1 Dan Goodley, Rebecca Lawthom,
3 Peter Clough & Michele Moore
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
This edition published in the Taylor & Francis e-Library, 2004.
RoutledgeFalmer is an imprint of the Taylor & Francis Group
3 © 2004 Dan Goodley, Rebecca Lawthom, Peter Clough and
Michele Moore
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.
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
9 ISBN 0-203-41337-7 Master e-book ISBN
2 ISBN 0-203-33935-5 (Adobe eReader Format)
ISBN 0–415–30688–4 (hbk)
ISBN 0–415–30689–2 (pbk)
3111 Acknowledgements vii
4 Preface ix
8 Four life stories 1
20111 1 Gerry O’Toole: a design for life 3
2 ‘I’d never met a vegetarian, never mind a lesbian’:
4 Colleen’s life story 15
6 3 The death story of David Hope 26
9 4 Frank 40
4 Doing life story research 53
6 5 Approaching: methodology in life story research 55
6 Doing: method in life story research 71
9 7 Informing: epistemology in life story research 97
vi Contents

1111 PART 3
2 Making sense of life stories 111
4 8 Frameworks: analysis in life story research 113
6 9 Findings: four analyses of life stories 125
7 10 Reflexivity: reflections on analyses 149
1011 PART 4
1 The age of biography: personal and political
2 considerations 163
4 11 Teaching: craft and ethics in researching life stories 165
6 12 A/Effecting: audience and effects in researching life stories 175
7 13 Applying: policy, practice and theory in life story research 185
20111 References 197
1 Index 208
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 . . .
9 This book is dedicated to our children – Ruby and Rosa, David, Eve and
30111 Charley.
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.
Part 1
3 Four life stories
3111 The four stories presented in the first part of this book will form the
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.
Chapter 1
Gerry O’Toole
A design for life
6 Dan Goodley
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.
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.
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.*
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
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.
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.’
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.
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.
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.
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.
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!’
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.
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)’
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.
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.’
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.
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)
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.
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.
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.
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.’
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.
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.’
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.
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.
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?
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.
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.’
7 I have left People First for the love of a good woman. Watch this space.
Chapter 2
‘I’d never met a vegetarian,
3 never mind a lesbian’
5 Colleen’s life story
8 Rebecca Lawthom with Colleen Stamford
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
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.
Chapter 3
The death story of David Hope
4 Michele Moore
3 November
I sat in the car waiting for a personal assistant to leave before it would
be convenient to be admitted to meet David. A mutual acquaintance had
asked me to get in touch with him, explaining ‘he broke his neck in a
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:
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.
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.
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.
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.
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.
David’s story 35

1111 April
2 According to David, over the next week or so, nurses convinced him he
3 could not be force-fed if he refused food while in hospital. His GP
4 confirmed this and told him to engage a solicitor if he was serious about
5 suicide. David said if he hadn’t been assured he couldn’t be force-fed then
6 he would be pursuing his own place, but if force-feeding could be avoided
7 then suicide was the more palatable and achievable option. ‘In a way,’
8 he said, ‘I am still planning my own place mate.’
9 We were suddenly at an unexpected and critical crossroads. He phoned
1011 to say the long-awaited appointment to re-fit his body brace had come
1 through. He was trying to decide between going for the appointment and
2 the chance of getting back out of bed and hopefully starting to live again,
3111 or cancelling the appointment, opting to stay in bed and starve to death.
4 A major factor against going for the appointment was the prospect of
5 the gruelling, slow ambulance journey intensifying his already unbearable
6 pain. Besides, he had discovered it might take only take three weeks to
7 die, which was less time than he had thought. He became very anxious
8 to speak to the mother of a friend who went through with starvation
9 some years ago but was conscious of the distress this could cause her.
20111 Basically he wanted to know the appalling details of the death by starva-
1 tion process. Will I go blind? Will my bones split my skin? Will my flesh
2 rot and stink? Will I cry out in pain or terror? Will I have lurid dreams?
3 He asked me to find out.
4 We agreed to speak again in a few days. He decided to continue eating
5 until then. He said having information about the possibility of living inde-
6 pendently would make him think about life rather than death. He said
7 his Mum and Dad now agreed he should have his own place. ‘You might
8 have saved my life, mate,’ he said ‘or you might not.’
1 May – and maybe
2 There followed a period of frantically trying to mobilise independent living
3 options. Over the next few weeks I called every housing department that
4 could be tracked down, rang every relevant housing officer with a phone
5 number and spoke to numerous housing association advisers. I met with
6 the local social services, talked to the district nursing team, rang specialist
7 medical centres, faxed expert professors in the UK and abroad. Representa-
8 tive organisations of disabled people were contacted, euthanasia societies,
9 information services, disability agencies and networks across the country,
40111 the Independent Living Fund, local authority needs assessment hotlines,
1 centres for integrated or inclusive living, in short anyone and everyone
2 I could possibly think of.
3 Those who responded were helpful but said a home of one’s own would
44111 take a long time to organise for David. Several pointed out the fine line
36 David’s story

1111 to tread between highlighting the urgency of his situation and the risk of
2 sectioning under the Mental Health Act. Some offered to add David to
3 waiting lists or to new build development lists. Others never rang back.
4 There was no immediately available emergency option.
8 Colleagues told me Social Services would have to do an assessment of
9 David’s situation within 28 days of his asking, and I sought advice from
1011 trustees of independent living agencies on the best way to support him in
1 this. ‘It’s very important to be agreeable,’ the various trustees said. ‘Don’t
2 appear to be challenging the local providers. Be conciliatory, say, “We
3 have a breakdown of what we think a person needs to survive. Can you
4 do one for David and then we could get together and see what kind of
5 agreement we can reach?” Be helpful. Smile a lot. Record everything in
6 writing, including phone calls. Present the exercise as to identify the ideal
7 service for David and then he can reluctantly let them beat him down
8 . . . you will have to keep saying “We appreciate you’ve budgeted for X
9 but what about Y? What is your view? In your view is Y critical for
20111 David to be able to live independently?” If they propose residential living,
1 call their bluff and ask for the costs – even better ring someone up to
2 have costs of local residential ready in hand.’
3 I was hundreds of miles away and reeling. I was prepared to put David’s
4 case, but he was preparing to die and my job seemed to be about placating
5 those who should prevent this. David’s senior social care worker refuted
6 the emphasis on urgency, saying David was probably attention-seeking
7 and wouldn’t go through with his threat of starvation. She said she was
8 just as worried about her own son, who had bought himself out of the
9 army and was at a loss for what to do next. Twenty-eight days later it
30111 was too late for David to be assessed.
1 In the middle of June he left a voice message: ‘It’s David. Ring as soon
2 as you can. It’s quite important. It’s about sorting out my own place.
3 Help me. Please help me, mate. It’s vital. I’ve got to get my own house.
4 Come down here. Ring as soon as you can. I’m in deep shit. I’ve got to
5 leave here and I’m really for it. Please, please ring. . . . Please, please ring.’
6 I rang and then went straight to see him. I never found out exactly
7 what had gone on but he was desperate to fill out a form for new housing.
8 His Mum and Dad were supporting him. He dictated his application:
40111 As reported in Section 21 I have a complete spinal cord injury at level
1 C4 which means I am completely paralysed from the neck down and
2 need 24-hour personal assistance for all aspects of daily living. I am
3 currently residing in an annexe attached to the home of my parents
44111 and my mother provides personal support with some back-up from
David’s story 37

1111 home care workers. Over the years this situation has become less and
2 less satisfactory until now an irretrievable breakdown in family rela-
3 tionships has materialised. My mother is no longer able or willing
4 We are no longer willing or able to continue this arrangement. I have
5 experienced prolonged episodes of depression.
6 I now wish to pursue an independent living situation and am
7 therefore applying to the Council for necessary ground floor accom-
8 modation. I need 24-hour personal assistance which necessitates my
9 application for two-bedroomed accommodation.
1011 The situation of living in my parents’ home makes me feel more,
1 not less, vulnerable, not least because of their age. It’s their house-
2 hold, with their rules. With the best will in the world I lack personal
3111 choice. My previous crisis (depression) stemmed from this situation
4 and I was admitted to psychiatric hospital where I needed high levels
5 of medication for sleep deprivation and mental stress and distress.
6 I have spent the best part of three years in hospital most of which
7 comes from the serious difficulties surrounding my housing situation
8 rather than from medical complications my spinal injury throws up.
9 The lack of social experience which my living situation allows brings
20111 intolerable psychological pressure. The stress and distress I experience
1 ruins my parents’ lives too.
3 His mother quickly sent me details of David’s savings, benefits and
4 allowances. She did everything she could to help complete the housing
5 application and we sent it off. The senior social care worker undertook to
6 convene relevant purchasers and providers but telephoned the family to say
7 that confirmation would be needed at a forthcoming case conference that
8 this is what David wanted and that he would have to convince the com-
9 mittee of his capacity to cope with an independent living situation.
30111 The end of June came around and it was finally arranged that to
1 convince the committee of his aptitude, David would try staying at home
2 with live in personal assistance while his parents went on holiday. I phoned
3 him several times during this period and he seemed to be upbeat. The
4 personal assistance was working well. He was particularly positive about
5 having seen a solicitor and made a will to formalise his request that he
6 should not be force-fed if he opted for starvation at any point during his
7 life. This made him feel calm and he said he was enjoying his time home
8 alone. At the end of the fortnight the senior social care worker left me
9 a message saying the last two weeks had shown it would not be possible
40111 for David to live independently.
1 I tried and tried to call him to find out what had happened but could
2 not get a reply. When I finally reached him he hadn’t eaten for three
3 weeks and was tired and forgetful. ‘He’s been hiding so much’, the senior
44111 social care worker said. ‘We have to respect his wishes.’
38 David’s story

1111 July
2 David hadn’t told me of his decision to begin starvation. He was deeply
3 concerned that I shouldn’t be upset because I was pregnant. ‘I didn’t want
4 you to hear bad news. You did everything you could.’
5 I called my most respected disabled friends and colleagues, seeking to
6 share liability for knowing what was going on. Their responses varied
7 from those who advised pleading with David, saying to him, ‘Having
8 looked over the edge you owe it to all of us to look over again, spend
9 some time, take longer,’ and those who urged me to find out more about
1011 the status of his living will so that if I was satisfied that his decision was
1 the right one for him I could support him from a position of knowledge.
2 But they all said, ‘Whatever you do you’ve got to live with it.’
5 August
6 In the end I went once more to see him. His Mum showed me in. He was
7 in bed, thinner, struggling to concentrate, his face sallow and washed in
8 cold sweat. The curtains were drawn. He fixed my gaze and said ‘Sorry,
9 mate.’ I asked if he was sure he wanted to die. He said he was sure. He
20111 asked me to touch his face. Slowly he asked me to support him in his deci-
1 sion. He asked me not to come to see him again because he would worry
2 about the baby and because there was nothing I could do. He spoke with
3 great difficulty but kept saying ‘Thanks, mate.’ He asked me to look after
4 his Mum when he was dead. He asked me to tell his story so that others
5 didn’t come to this same deathbed. I sat with him, tracing his face with my
6 fingers. He was in and out of consciousness. After a while I had to go.
9 September
30111 An emergency case conference was convened, after which the senior social
1 care worker confirmed they were not looking to section David. Their main
2 concerns related to withdrawing home support staff who felt compro-
3 mised by his actions. Social Services reserved the right to decide whether
4 David should be moved to a nursing home or if they would allow his
5 mother to care for him at home. The importance of respecting David’s
6 rights and also the rights and wishes of his family was continually stressed
7 but sounded ironic to me.
8 The senior social care worker seemed reassured by her judgement that
9 David was ‘sane’. She said in her view David made his decision to commit
40111 suicide because he was shocked by the cost of independent living. I never
1 found out what figures he had been shown but it seems he was persuaded
2 that the price for his life was too high. She also attributed his desire
3 for suicide to what, according to my notes, she referred to as ‘a bizarre
44111 relationship with his mother’. I sat at my desk incredulous at the lack of
David’s story 39

1111 insight into how social care policies and practices were shamed by David’s
2 relationship with his mother, not knowing what to say. ‘If David dies’,
3 she went on, ‘back-up support may be offered to his parents but this
4 would be informal’ – I’ll be around if you need me style. She rang off.
5 Later that month, David died.
6 Sheila said there was a big turnout for his funeral.
7 David’s story was told differently in the newspaper. It was stated that
8 ‘he felt there was no point in living’ and that this was because ‘he had
9 been unable to come to terms with his enormous handicap’. He was
1011 described as ‘making immense demands’. An inquest concluded that David
1 died from starvation after electing not to be fed after severe injuries
2 suffered following a swimming accident.
Chapter 4
4 Peter Clough
3 ‘You could call it “Being Frank”, couldn’t you?’
5 ‘Frank’ burned out spectacularly in the late 1990s: left his wife of twenty-
6 six years, rehearsed the febrile cliché of late-found middle-aged freedom
7 – a motorbike, a boat even, a leather jacket, a tawdry (and, as it turned
8 out, dyed) blonde – and came out of the spin only when his racing blood
9 dramatically sought to avoid an infarction and he all but died.
20111 I had known him at college thirty years before, kept fitful touch over
1 those years and was aware of his local success: turning his back on his
2 professional training as a teacher, he had worked for some years as an
3 auxiliary in a mental hospital – this was the early seventies – then teaching
4 part time in a borstal before joining a school for ‘maladjusted’ boys as a
5 houseparent. By thirty-one he was deputy headteacher, and got his own
6 school – one of the largest residential places in the country for what were
7 now emotionally and behaviourally disturbed boys – at thirty-four. At
8 forty-eight he tore it all up, and at fifty-one he phoned me to ask: would
9 I write his story?
30111 I always thought he was a prick – pompous and quite undented by
1 doubt. Perhaps there was some envy there: women seemed to like him.
2 But his ideas – unremarkable enough in themselves – were sufficient for
3 his preferment, and indeed his school became something of a showcase
4 for his county’s policies. (My wife was fond of saying he had ‘a station
5 above his ideas’.)
6 Quite what happened is not entirely clear to me. Certainly he got bored
7 with and left his school – presumably it was the same with his wife.
8 We met just the once in a pub near St Pancras. He brought his diaries
9 and said that he’d read ‘Rob’ (a story I’d written earlier about a deputy
40111 head, see Clough, 2002) and said – quite unabashed – that he wanted
1 me to write – and publish – his story. He said he wanted to be called
2 ‘Frank’ in the story. Guided by him – ‘that’s a powerful piece, isn’t it?’
3 – I flicked through the diaries and he bought us each another pint.
* * *
Frank’s story 41

1111 16th April

2 He was there again this morning, my father. When he is there he is usually
3 naked which is the strangest thing, for I never during all his life saw him
4 without clothes; now he is – bare. This is the better word for an old man
5 without clothes and without passion.
6 Of course he is not really there, nor is he dead though it sounds like
7 it. But on the mornings when he is waiting for me – always bare – as I
8 am waking, he is with me for the rest of the day.
1 17th April
For the second morning he was there.
I feel that I know why my father needs to be naked
6 17th April 11.30
8 There is no full stop to that sentence and I cannot remember now why
9 I stopped nor what the feeling of that knowledge was.
20111 But he was always very clothed. When we were little he would cover
1 himself up quickly – a leg, I mean, or a loosed shirt button – if we went
2 into his bedroom; actually he would curse us for going into the room.
3 He had white and quite hairless legs I think; we had glimpses of his shins
4 if his trousers rode up as he sat. But of course we must have seen more
5 than this; there were visits to the beach or the baths, remembered just
6 because they were not common. These memories are unwholesome so I
7 feel the muscles of my face reaching for a sneer of disgust. My brother
8 says: he was seven or eight and taken – again remembered for its unique-
9 ness – to the baths by him; my brother looked at him changing and he
30111 hit my brother, hit him and pushed him into another cubicle and said
1 You dirty little bugger
2 And now he goes weekly to a Naturist Club which holds its winter
3 meetings in Gresham Baths! Yes, a nudist! I don’t know whether this is
4 hilarious or disgusting; certainly it makes me angry.
2nd November
8 I am seven, eight and on this light summer’s night I can’t sleep; maybe I
9 have been down two or three times already but I am not prepared for
40111 what happens. My father is there; he is dirty from work; in a rage he
1 seizes me – this is the word I always use – he seizes me and all of one
2 action pulls my pyjama trousers to the ground / has his belt off from his
3 waist / pushes me face down onto the table / lashes my bottom with
44111 his leather belt.
42 Frank’s story

1111 My brother says my father put him to bed one night as my mother
2 worked and Colin remembers this: violation, my father tearing off Colin’s
3 clothes and Colin’s shame at standing naked before him; the impropriety
4 of it all; rough hands pushing . . .
5 My other brother – my older brother – says he has no memories like
6 these.
7 When I met my father a few years ago after a silence of many –
8 when he told me he was a nudist! – he was so changed physically that I
9 was shocked. In my childhood he was big, loud, vigorous even. When
1011 I saw him last he was shrunk, his eyes milky, his hair like grey wool and
1 his face florid; he had a pencil-line moustache which makes me say seedy
2 and he went to piss four or five times in the two hours I was there. Most
3 of all he was deaf; we have all soft voices – my mother, my brothers and
4 I – and I had to speak uncomfortably loudly and say things several times.
5 I had planned to tell him he was a fucking cunt but could not imagine
6 having to repeat myself.
23rd February
20111 There are times when I become my father; in fact the truth of the last few
1 years is that I have not known how to keep him out of my selves. There
2 are times when – in a certain posture of the nerves – I am him. The worst
3 of all – the most exhausting of all – is when I am also my own son. This
4 is not mystical or pathological; it happens like this: say I am so cross with
5 my son that I begin to loose the control that normally contains my anger
6 and then – at a certain point – I hear and feel myself saying things that
7 have a terrifying familiarity – of tone, if not of words themselves. I am
8 moved by the demons that drove my father, and at one with the terror
9 which the son feels. After this I am depressed, exhausted, wrung out.
13th March
3 Whatever it meant then, he must have been bright; he went to P—
4 Grammar School in Burnley, but was taken out at fourteen and appren-
5 ticed as a painter. It’s hard to tell what his childhood was like. When I
6 saw him a few years ago he talked fondly of his ‘Mum and Dad’, words
7 I think never to have heard from him; but in the time he lived with us I
8 never saw anything but bitter, bitter resentment towards them. When
9 I saw him a few years ago he said ‘she was a grand old woman’ and ‘she
40111 was marvellously brave’ and ‘he was a lovely man . . .
1 lovely, mind. When I was twenty I described a friend of mine – Martin
2 – as a lovely man and my father said don’t come that bloody malarkey
3 But he was born in 1921; which means that war broke out when he
44111 was eighteen, and he then spent nearly four years in the desert. And it
Frank’s story 43

1111 was here, at last, that he took his clothes off; before putting them on
2 again for forty-odd years.
3 I can only think – from the photos and from bits gleaned here and
4 there – that it was a mean childhood in Blackburn; and then, after the
5 promise of translation through the Grammar School, the bitter chains of
6 a hard apprenticeship. And then: life began in Libya. He spent four years
7 – from 18 to 22; from 1939 to 1943 – in Libya.
13th December
1 When he told me a few years ago that he was a nudist, what he said
2 was: ‘I’ve a private yard here at the back I can strip off in summer’ and
3111 later: ‘o yes we used to strip off in the desert’ and ‘I spent the best part
4 of four years bollock-naked in the desert’ and later: ‘I go to Gresham you
5 know, a sun-club in the baths there’. He was sixty-eight when he told
6 me this.
7 Four years naked in the desert? No no no; not this so-clothed man
8 with his smells closed in around him; not this man whose emotions yet
9 stood out like gnarls beneath those clothes; I refuse to let the sun find
20111 him out open and innocent, this prickly man.
1 But look, there is an explanation: the sun snaps off at six and beneath
2 that fearfully starry sky it is cold, very cold; supper done, tired of endless
3 cards, there is nothing but an early bed. This is a six-man tent but he
4 shares it only with Bill; or Trevor. And to lie warm next to another body
5 and – often gently, tenderly – to hold each other’s penis, to pull gently;
6 this frail eighteen year old sleeps open-mouthed and open-limbed like a
7 child, a million million miles away from home
8 And the next day and the next day and all the nights are the same:
9 Trevor, Ralph, Harry. O this is life. And if there is jealousy; and if a
30111 sergeant demands, and is rough and hurts, then this too is life, life far
1 from all things mean.
2 It must have come to an end all that sun and sexuality; and what a
3 cautery the order to strike camp and so home; and no blood in this
4 campaign but so much seed spilled in the sand; and so much shame to
5 bury later in cold little wives and homes. So much desperate, obliviating
6 fucking to catch up on; so much rutting and up-ending for this is what
7 it’s really for; stick it here, in here, here
8 The desert love left no mark on him that we could see: Kenneth Williams
9 was a bloody pooftah; we should beware the man in the corner shop who
40111 was a bloody bender; even, when I was seventeen, Jeremy Thorpe a bloody
1 brown-knob; and of Martin: don’t come that bloody malarkey
2 Or maybe there just simply was no desert-love; maybe he was simply
3 horribly buggered by the sergeant and left to hate; or maybe not that,
44111 even: maybe just unloved.
44 Frank’s story

1111 7th May

2 St. Annes-on-Sea is nowhere to live a life. A man should rage and be foul
3 there; a man should spoil it and foul it. It has no future and no past.
4 It is a perfect machine driven on a fuel of greed, smugness and deep
5 ignorance.
6 I only ever heard it ask one question, as if trying on a dress: will this
7 look alright?
8 There is of course no history to it. On sand, it was founded on money,
9 idle money; it made nothing, it was built on sand to play in, a monster
1011 play-pen for the old rehearsing their achievements and their wealth.
1 It has no roots, and how could it, built as it is on sand? The sand
2 blows away; they plant star-grass on the sand-dunes to stop the erosion.
3 This is not generally viewed as an ironic act. And without irony some –
4 clutching at the star-grass in the face of the north wind which blows all
5 away – some ‘locals’ call themselves sand-grown ’uns . . .
6 Can you blame a town? Yes, you can; you can say you are lying, little
7 town . . .
8 It was invented to be apart from history. It was just laid down on the
9 top of that windy coast; it was settled with deliberation there to be what it
20111 is. Men were not pulled there by the attractions of metals; or drawn to har-
1 ness or simply fish great waters. They went there to do what they did: to
2 make piles of red brick on sand in which to sit and celebrate themselves.
3 Can you blame a town for this? Yes. I do.
4 The town was not there to do anything; it had nothing to overcome
5 and nothing to become. The people who settled it had done with becoming;
6 they had no use for history; this was just the point of coming here; here
7 you could be away from all the meanness. This is the point: they were
8 here, and with history elsewhere – in the backstreets of Bolton and Bury
9 – there was nothing to transform.
30111 There was a special need to do it like this with rude Blackpool only
1 four miles up the road; and just fourteen miles behind, Preston like a gate
2 with all of industrial Lancashire pressed up against it.
3 So here I was born into a town with no future and no past. It was birth
4 into the day-care room of an old people’s home; an affluent day-care room
maybe, but beneath the deodorant spray and the daffodils the smells are the
same: old flesh, old gums. (Or: birth into a perpetual January on one of those
retirement coasts of Spain; or – this is worse – born on a perpetual cruise.)
There are worse births? Yes, but this was mine.
40111 12th May
1 My family should never have strayed into this place; they were the decent
2 poor, and in neither respect should they have been housed here. St Annes
3 should have been better policed at the boundaries, and they should have
44111 turned him back up the road to Blackpool or Preston.
Frank’s story 45

1111 So here is this man returned from his war in Libya; married – of course
2 – to a warm woman; and he takes on with his parents this huge joint
3 mortgage in St Annes; it’s a small house but it is improvement for them
4 all, away from the terraces of Blackpool and Preston and Wakefield.
5 In these places they teased us that we lived in Saint Arns. How is life in
6 Saint (not snt) Arns then lads. And the old folk live upstairs, and the
7 young – with their two small boys – are downstairs; and the old man
8 dies, and there is all the mortgage to pay. Why not then go back to
9 Blackpool, or Dewsbury?
1011 Because it is going back.
14th May
4 I never heard my cousins or other relatives referred to but they were
5 bloody this or they were bloody that bloody weedy Earnest – my mother’s
6 loved brother – that bloody oily Jimmy; your mother’s bloody lot in
7 Wakefield or my mother’s bloody lot in Blackpool; Ernest-bloody-know-
8 all; what’s-her-name, that do-bloody-gooder in Clayton?
9 The point is: so how could he go back up the road to Blackpool? Or
20111 back over the hill to Dewsbury?
1 And something in the very air must have started to corrode my father.
2 He was slowly eaten away – hollowed out – by the place.
3 But of course he was: there was no history to eat on; there was no
4 nourishment in that place, and he had left forever the other places . . .
3rd September
8 He must have been – must be – the loneliest man I ever came across.
9 I can only think of one man who might have been a friend as I would
30111 think of it, and this man – Ken – he beat up one night in a back street
1 because he thought his girlfriend – his girlfriend – had slept with Ken.
2 He set a ladder – a decorator’s ladder from an adjoining yard – against
3 the back wall of Kath’s yard. This was late, after throwing-out time. He
4 watched and Ken came and sat drinking (coffee?) in the back room.
5 He waited and when Ken left – Ken did leave – he somehow talked him
6 into the back street and beat him; he punched him and then he held Ken’s
7 head by the ears and bashed it against the wall and then bashed it against
8 his own van.
9 My father told me this quite carefully when I was eighteen and he
40111 showed me a dent in the wing of the van. He was then forty-three and
1 I am now forty-three.
2 But he laid waste around him; already cut off, he cut off and cut off.
3 The neighbours were bloody know-all bloody Jenkins, Harry bloody
44111 Rowlay; that smart bugger Sanderson, that bloody weed De Freitas. The
46 Frank’s story

1111 men he worked with were Buckethead or Little Zem; or, at best, bloody
2 Ken or plain Barker. And they were too clever by bloody half; or else
3 bloody idle or messy buggers . . .
4 But there’s a particular sound which goes with these epithets: it is some-
5 thing like tur – slightly softer than the breath spat out by air-brakes – so
6 it would be tur/that bloody weed Earnest or tur/Harry-bloody-Owen? tur/a
7 wet if ever there was . . .
8 It comes through the teeth but it is bile come through the heart.
9 This tur was part of a complex and routine sneer, but a sneer so deep
1011 you might – in the unlikely event that you’d been visiting us – you might
1 not even have seen it on the surface; you might even have thought that
2 it was: banter. We in the family knew what it was and – like those who
3 live by the volcano hear as a privilege its harmonic tremor – we knew
4 what depths it came from and we mostly knew how to – leave our homes?
5 go under tables? – read its power. (Actually I never did, really, learn to
6 read the signal; or, rather, never learned to resist it. I used to walk up
7 the cinder track even when the geysers were hissing and spitting.)
8 This tur is standard to us: I have it, my brothers have it and even my
9 mother – though clearly by a different process – has it, though none,
20111 I think, can use it as I do. I can all but kill at twenty paces with it.
1 We’re mostly good around each other; but a single, unguarded tur is
2 bane.
19th October
6 My mother?
7 Many years later my therapist said to me: you want to bury an axe in
8 your mother’s cunt. This was shocking – I mean he shouldn’t have said
9 it – but it was also untrue. Let’s get this straight once and for all.
30111 I think my therapist had a problem with his own mother; I think
1 that he wanted to bury his axe so. But these were different axes and
2 different cunts. I wanted to bury an axe in a cunt, but the cunt was my
3 father.
4 My mother: is about seventy-eight as she reads this. She was born in
5 Dewsbury in 1920. Her father – my grandfather – was strapping although
6 bantam; he lifted a half-hundredweight of potatoes on each shoulder
7 though he was no more than five feet six. He pushed tunes – ‘Bread of
8 heaven’ and the like – with a barrelled tongue through his teeth like a
9 hissing kettle; he sang songs like ‘Mockingbird Hill’ with only a doy-doy-
40111 doy and a dee thus: dee-dee-doy-doy-doy-doy-doy-doy-doy-dee-dee-doy.
1 He lifted a cheek to fart very fruitily, (though in no way sought to witness
2 it). He smelled of mustard and wintergreen and pigs.
3 He kept pigs, my grandad. His father and then he ran a horse and cart
44111 with vegetable produce; they prospered and bought land, many acres
Frank’s story 47

1111 including a small early eighteenth-century farmhouse which they turned

2 to work with horses, cows, pigs and chickens. My grandad – Ewart was
3 his name – Ewart kept on with the pigs till I was about twelve, though
4 the buildings were falling about them.
5 He owned at one time: eighty-nine acres (of which forty-six were to
6 become building plots); a whole terrace of eight stone houses; fourteen
7 cows, three horses, sixty pigs, countless chickens. You see, this was a man
8 of substance.
9 Also, he stopped only months before he died at ninety-one going to the
1011 wholesale market at Dewsbury twice a week at five-thirty in the morning
1 to buy a bag or two of carrots or peas, potatoes; and then taking the
2 stuff round marked up for small pence to the old regulars.
3111 He hated through his life the Co-operative Society. He was a Whig. He
4 talked of the ‘Pakis’ who came in numbers to staff the wool industry in
5 the fifties and sixties but I think – I think – it was a fairly unloaded
6 abbreviation. I think so.
7 The point is: here was a real freemason, one of nature if not society’s
8 masons.
9 At the time of the disclosures about nudism, I asked my father did he
20111 think my mother could have been abused – sexually abused – by her
1 father. I was in therapy at the time. He didn’t answer, perhaps didn’t
2 hear my question.
15th October
6 Ewart’s greatest excitement was homosexuality: ‘ah’d geld ’em; an o-ffence
7 before the good Lord; lahk she-ep wi’ two hee’ads’.
8 ‘My God my Father while I stray’ Whatever did that mean?
9 The point is this: I have the feeling that this old man was the last whole
30111 man – man of mirth and industry – in our family. Yes, yes: he was an
1 old sod, a tory, a powerful patrician; a Churchillian, a petty bourgeois;
2 a sort of bully; an intolerant, ignorant man; an old fart even. But the
3 point is: here was a natural freemason
4 My father hated the history which met in Ewart: industry, capital,
5 chapel; and the confidence this gave him to be beholden to no man.
6 And his popularity: in the leafy peninsular suburb that Drayton then
7 was to Dewsbury they called him – with fond irony which he well
8 liked – the squire. My father hated his strong views which were all but
9 cathedral.
40111 But most of all – it comes to me now – my father must have hated the
1 normalness of that family; its harmony, the love there was, the terrible
2 exclusiveness of that sort of family tur/they’re bloody medieval! Squire
3 bloody Ewart and his poor bloody yokels And that bloody wet Earnest!
44111 Earnest! bloody Earnest! Tur!
48 Frank’s story

1111 30th June

2 I was looking at the old photos the other day. My favourite picture of
3 the old man is the favourite one still on my mother’s wall: an old
4 man of seventy-six or so with a round old face riven with mirth, eyes a
5 merry fury; his head just atilt back and a worsted cap tilted on the back
6 of that. His mouth is slightly open – an oval on the point of saying some-
7 thing – in the middle of a chin rough with two days’ white stubble. Just
before the photo disappears at the bottom there is a glimpse of collarless
When you look at the photos you see at a glance what excited my
father’s hatred: at the centre of this family are Earnest and Annie clearly
loved. Oh, they are loved in the quality of the stitch that binds their
collars, their knickers; they are for that matter loved in the ninety-year-
old buff cardboard picture frames on which persists in gilt: ‘Harold
Yewdall, Family Photographer, 4 Royal Parade, Harrogate.’ (I mean only
that love is sometimes swelled by money); but mostly: I swear you can
tell they were loved in the eyes and the turn of the mouth. Even in the
9 grim Sunday School group photographs, the brylcreem and plaits and
20111 severe collars and all: these only just stop the loved ones breaking through.
1 It is this: these photographs quote from – these photographs intend – a
2 whole world of relationships around these children.
3 Oh but look at the few pictures of my father’s childhood: they are not
4 organised by the relationship of their subject to anything living: he is
5 merely there, leaning against a wall, all but of the wall. He is dead already;
6 the only points are the small dead carbons of his eyes. The rest – with
7 his body in it – is an undifferentiated field of greys. And to be sure, the
8 stuff of the scene is poor: the socks, the jumper, the wall, the quality of
9 the photograph. Do you see?
30111 Or: this picture of him in his uniform in Libya in 1942 standing with
1 three others (Trevor? Harry? Ken?): here is a man whom love has never
2 touched.
3 I can see why he set about my mother’s family in the way he did. It
4 was – like a good Victorian family – a conservative little society in itself.
5 So he set about my mother’s family because it was good and whole;
6 it was – like all families that work – a conservative little society; it
7 regulated . . .
8 Thinking about my family makes me think about ‘class’. I don’t under-
9 stand the gradations of class well enough – nor the method of history
40111 needed – to know how my mother’s family were located socially. They
1 had some money – all the acres and so on – but their position is better
2 seen in the sombre light falls through the chapel window: they had the
3 assumption goes with high Wesleyan Methodism.
Frank’s story 49

1111 5th August

2 There was a life to this chapel continuous with the Hebrons. At ten –
3 10! – my mother played the piano for Sunday School and Earnest, two
4 years her elder, was (the) Chapel organist! There was Men’s Fellowship,
5 Wives meeting, Missionary Society, Bible Study Circle, Prayer meeting,
6 Christian Endeavour . . . Youth Fellowship: so on and so on, a dense grid
7 of lodges in the heavy masonry of the chapel.
When we visited there as children in the 1950s and early 60s, there
would always be – on what my grandfather had sold to the chapel – a
cricket-match: Drayton Meths, redoubtable whether ‘A’ or ‘B’, watched
on Saturday afternoon (despite Dewsbury Athletic and Leeds United) by
thirty, maybe sometimes fifty people. And: served plated teas from C.C.C.’s
own pavilion, a shed of sorts but a dedicated pavilion for all that.
I don’t know where God figured in all that.
But the point is this: my mother and my mother’s family were deeply
involved in Drayton, in the chapel. So: the house was untidy, dirty even;
so was my grandfather and my grandmother. Actually very untidy and
9 really quite dirty. Of ‘high culture’ they had none. But the chapel bestowed
20111 on them an authority and a role which they claimed as rightly due status.
1 And there were four or five old aunts – sisters to my grandfather. They
2 and their houses smelled of the stale propriety of life in the shadow of
3 the chapel. Their antimacassars, their carriage-clocks and whiskers; their
4 dark front-rooms and their [do-we-have-to-eat-this-mum-yes-you-do-and-
5 don’t-let-me-hear-another-word-out-of-you] potted-meat sandwiches: these
6 seemed of the provenance of the chapel.
7 These are impressions; but I see as I assemble them now in this haphazard
8 way – I feel the thrill of – my father’s hostility to it all. It was like some
9 rural idyll in a way; all in its place and all of a piece; and all vulnerable.
30111 Now do you begin to see?
1 It is beginning to come clear, isn’t it, the tattoo to which my father
2 marched in this particular war of the roses? In the streets of East
3 Lancashire, my father’s family measured its days in bobbins, its nights in
4 ales and its earnings in rent. Now only – what? Twenty-five? Thirty-five?
5 – miles away in the West Riding of Yorkshire, my mother’s family was
6 known in swine, in hymns and in acres.
7 These are similar folk, mind.
8 What did my father make of – think of – marriage?
9 Returned from Lybia to Marston Moor where my mother had been
40111 drafted as a cook, how could he not see in this woman – this beautiful,
1 innocent woman serving the cabbage on Marston Moor! – how could he fail
2 to see his very escape from life to date? He is no fool, this man: here is
3 a woman of transparent but quiet breeding such that she cares to be embar-
44111 rassed – though she serves 3600 meals every day – when he teases her.
50 Frank’s story

1111 15th February

2 What he did not see – how could he know it in himself? – was that the
3 cost of getting her was – eventually – her destruction. The simple good-
4 ness would have to be smashed.
5 What structure of experience is at work here? I mean when I wrote that?
6 I only know its reality because I have done it myself; do it myself, again
7 and again. I destroy good things. ‘You want something until you get it’,
8 said Sarah.
9 From the position of your fracture; from your fracture, how can you
1011 see beauty, wholeness and not want to see it as perverse? Deviant?
1 Contrived? Privileged?
2 So I am at war with myself, with the father in me.
3 But what is the point in all this display? It’s this: I’m not interested in
4 evoking a particular stratum of life in suburban Dewsbury in the 20s/30s/
5 40s/50s and so on as a historical project; I’m resolutely not interested in
6 it as history as such. I am interested only in understanding the psycho-
7 logical history of my parents; my father in particular. And this so that
8 I can understand something of my history. This is wank of course.
1 20th October
2 ‘History is what hurts . . .’. Who wrote that?
3 Of course, I understand that I can only get to my history through these
4 histories, through events constructed – made accessible – through histor-
5 ical moments and the colours with which historians paint them. But my
6 intention here is not historical, if to be historical is to seek to catch a
7 character rather than to live for a moment in an evocation of it.
30111 6th August
1 It occurs to me that after a certain age I would lie to my father as a
2 matter of biological reflex; I lied in many ways to save my life.
3 There must have been, early on, some mechanism for encouraging truth-
4 fulness; but after a certain point it must have failed. I even wonder whether
5 I ever had a truth of fact: how many apples are there in the bowl? seven,
6 or three or seventy-three but – certainly – not the number You see dad.
7 So now my truth is falling apart . . . when did that begin?
28th November
1 ‘Looking back my relationship with the truth was always. . . .’
2 . . . accounts stitched together for survival
3 But when I start to talk of truth falling apart I realise that I started
44111 telling ‘untruths’ not long after my first breath. . . . . . .
Frank’s story 51

1111 This may be true . . . This loose, this casual relationship with the truth.
2 In Golding’s The Spire, there is a moment when the Archbishop realises
3 with a full – as it were a complete horror – that his bishop had never
4 learned to pray; he never learned to do what the church calls prayer. And
5 I have been thinking recently that I never learned what a fact was; I never
6 learned what is the truth. Anyway lying is much more fun, is creative.
7 I would lie to my father as a matter of biological reflex. I could not
8 not lie.
19th October
2 I could never buy Tim’s explanation of me; all that mother’s cunt and
3111 father’s prick stuff: you’d like to take a cleaver, a big meat-cleaver to
4 your mother’s cunt you would well, no, I wouldn’t.
5 I have no interest in facts. I can’t do with explanations of any sort;
6 never could. I’ve always had to re-invent knowledge, cos I won’t believe
7 other people’s narratives . . . unless they’re really good narratives; which
8 is why I have to burn myself before I know that fire burns . . .?
18th September
2 I was bound by so many rules; it seemed it was all rules. There were
3 the rules of my damaged family, which of course were not so visible; the
4 rules of the neighbours which my mother feared and whispered about; the
5 rules of the fucking methodist church, and of school. The whole
6 thing, the central principle, was containment, no growth, conservatism . . .
7 I’ve thought hard about this, and I think the whole thing
8 I know I say you must understand that my father was so damaged too
9 but you must excuse me if I don’t understand it. I can’t hold my pain
30111 and his pain together in the same account; my pain hurts me, not him.
16th February
4 Paint on his overalls was always the splash of someone else’s brush.
18th September
8 Without history there can be no future: the very meaning of conservatism.
9 It is not that there is too much money in St Annes. Of course, there
40111 is too much idle money there
1 It is held together by a coalition of deep greed, smugness and . . .
2 There are mile after mile of neat houses . . .
3 And there are, of course, two sides to the tracks; but literally, the rail-
44111 way roughly divides an affluent from a less affluent. On the coastal side of
52 Frank’s story

1111 the railway the houses are bigger, many of them very big, but hardly a one
2 touched by thoughtful design. The older ones were built mostly . . .
3 A town erected with a high wall and admission fee far away from the
4 rudeness of Blackburn and Manchester and Bury; and Blackpool.
5 But you have to understand that my father was so damaged too. His
6 father – the story goes – was a ne’er do well; and gassed in the war; and
7 seldom worked, maybe even drank. And his mother worked severely. I
8 suppose you have to understand that, to understand anything of the rest.
3rd January
2 I don’t know why I never – really – loved other men.
4 * * *
6 We were on our third pint – Frank seemed to down the first two with
7 some speed, and I had the feeling that he kept my glass full so that I
8 would continue to read. Much of his diary was turgid. I could do nothing
9 with it.
20111 – I must go soon.
1 – You’ll write it? Do something with it? Interview me? Let me see a
2 draft?
3 I was disgusted by his enthusiasm.
4 He insisted that I took the diaries with me when I refused the fourth
5 pint. Inside the cover of the first he wrote his phone number.
6 I phoned him a few weeks later, said I couldn’t make the diaries into
7 a story; I was a researcher – albeit a life-historian – not a writer.
8 I told him they might speak for themselves – but that they needed
9 ruthless editing.
30111 – Do it, he said.
1 So how d’you like this, ‘Frank’?
Part 2
3 Doing life story research
3111 Part 1 of this book has presented you with four life stories. These narra-
4 tives capture specific narrative styles and forms; position the narrator and
5 writer in various ways; draw upon contrasting philosophical, theoretical
6 and methodological concerns; and engage with four overlapping but
7 discrete areas of social scientific enquiry. In Part 2 of this book, we iden-
8 tify some methodological considerations of researching life stories. Chapter
9 5 examines four methodological persuasions that gave rise to the four
20111 stories presented in this text. The focus here is on how we approach our
1 subject matter, our stories and our narrators, participants or narrative
2 subjects. In Chapter 6, we consider some general concerns associated with
3 method or the doing of life story research. Each of the writers of the four
4 life stories considers issues of method including access, ethics, how we
5 each wrote our life stories and our relationship with our informants. This
6 is a substantial chapter and aims to demystify the doings of researching
7 life stories. Chapter 7 completes our engagement with method/ology by
8 exploring the ways in which methods are always directed by the assump-
9 tions of knowledge held by researchers. Here we expose some of the ways
30111 in which the four life stories are the products of particular epistemological
1 locations.
Chapter 5
Methodology in life story research
5 In writing the life stories of this book, the positions we have adopted –
6 in this case, in relation to methodology – are somewhat contrived (in the
7 best pedagogical sense). We are aware that the methodological landscape
8 that we paint below, as well as our appearance on this scene, is some-
9 what too clear and transparent to be true. We know that researchers
20111 adopt a whole host of overlapping and mutually inclusive methodo-
1 logical positions when they enact life story research. However, for the
2 sake of clarity, we have each deliberately assumed a distinct – perhaps
3 exclusive – methodological position in the writing of our stories in order
4 to demystify method/ology in researching life stories:
• Chapter 1 – Gerry O’Toole: A design for life – reflects a non-partici-
patory ethnographic approach undertaken by Dan Goodley;
• Chapter 2 – ‘I’d never met a vegetarian, never mind a lesbian’:
Colleen’s story – is the product of an emancipatory interview approach
1 adopted by Rebecca Lawthom;
2 • Chapter 3 – The death story of David Hope – reflects a participa-
3 tory ethnographic approach utilised by Michele Moore;
4 • Chapter 4 – Frank – is Peter Clough’s piece of non-participatory
5 fiction.
7 This chapter allows us to explore our chosen methodologies. A number
8 of shared concerns emerge. First, we are discussing methodology, not
9 method. The former refers to the persuasions from which our stories
40111 emerge, the latter to the doings of research (considered in the next chapter).
1 Second, methodologies denote different levels of participation on the
2 part of the participant/informant/narrator or narrative subject in the doing
3 of life story research. Third, the authority of the researcher will change
44111 according to the methodology. Fourth, methodology enacts an approach
56 Approaching

1111 to research that combines a commitment to our participants and the gener-
2 ation of theory, alongside an attention to narrative qualities of plot,
3 characterisation and readability.
A non-participatory ethnographic approach –
Dan Goodley
8 Gerry O’Toole’s story is the product of a particular methodo-
9 logical approach (ethnography) and mode of research production (non-
1011 participatory). My voice, as the writer of the story, dominates. Events
1 and occasions from a number of characters enter the fray. Gerry’s ‘first-
2 hand account’ permeates the story, shaping its structure and offering
3 narration. More than this, there should be a sense of a particular view-
4 point being made by the story. But from what position in terms of
5 methodology does this story emerge? In this section, we turn to the role
6 of non-participatory uses of the ethnography in the bringing together of
7 material and the writing of life stories.
Introducing ethnography
1 Ethnography is an approach to research that involves immersion within,
2 and investigation of, a culture or social world. Broadly speaking,
3 researchers enter a given culture and draw upon a variety of methods in
4 order to make sense of public and private, overt and elusive cultural mean-
5 ings. Hence, ethnography can be conceived as a methodological persuasion:
6 a guiding approach to research, in which the researcher attends to the
7 rich generation of meanings by social actors, as a consequence of various
8 structures and decisions made by individuals. As Vidich and Lyman (2000)
9 point out – ethnos is a Greek term denoting a people, a race or cultural
30111 group that is described (graphic). However, this approach involves moving
1 far beyond description to explanation.
2 Historically, ethnography is rooted in descriptive anthropology (Tedlock,
3 2001; Vidich and Lyman, 2000). The renowned modern anthropologist
4 Malinowski (1922) argued that the role of the ethnographer was ‘to
5 attempt to grasp the native’s point of view, their relation to life and
6 to realise their vision of their world’ (cited in Edgerton, 1984b, p. 498).
7 Consequently, there are clearly the remnants of a colonialist past in this
8 view of ethnography, with the omnipotent Western visionary attempting
9 to make sense of the unknown, dark, hidden culture of the ‘native’.
40111 However, what remains in a hopefully more egalitarian postmodern
1 research landscape is the conceptualisation of ethnographic research as
2 making the strange familiar. This involves getting to know people by being
3 there, alongside them, during ordinary days, to try to capture their experi-
44111 ences at first hand. Corbett (1998) describes ethnography as an immersion
Approaching 57

1111 within the deep culture of a social group that attempts to find hidden
2 treasures and submerged dangers. In principle, ethnography is committed
3 to representing the actions of the relatively unknown, perhaps oppressed
4 and ignored, insiders of a given social group. Ethnography has been used
5 in studies that have tried to ground their analyses in everyday realities of
6 a variety of social groupings whose agendas and meanings have been
7 under-represented in theoretical, practical and policy debates (see Lincoln
8 and Guba 1985; Erlandson et al., 1993).
9 While there is a clear vision of ethnography as making sense of the
1011 culture of the ‘other’, the use of ethnography in practical and policy-
1 making contexts by practitioners – particularly in educational, health and
2 social care settings – has given rise to a different conceptualisation of
3111 ethnography. Here, the aims are to render the familiar strange. Many
4 readers of this book may well be interested in using ethnography and
5 life story to make sense of the professional and personal contexts that
6 they inhabit on a daily basis. Indeed, for many practitioner-researchers,
7 classic ethnographic texts fail to resonate with their aims to understand
8 further (and change for the better) the very cultures that they are, and
9 perhaps for a while have been, immersed within. Ethnographic research
20111 can be embraced as a methodology that aims to look again at the cultures
1 we may feel we already know so well. In this sense, ethnography is about
2 turning a critical eye onto practices, dynamics, policies and meaning-
3 making within familiar cultures. It means turning social contexts into
4 research contexts: the latter associated inevitably with the participant-
5 turned-researcher examining the social context anew through the
6 perspective of a critical enquirer. While you might well want to take
7 on the ethnographic challenge of examining some context of which you
8 know little, you may also take on an ethnographic stance in relation to
9 a well-known context.
30111 Both of these takes on the aims of ethnography highlight one over-
1 arching concern. When researchers become part of the cultures that they
2 describe, then researcher and participants interact together to produce the
3 data (Charmaz, 1995). Even when a covert approach to participation is
4 adopted – and there are clearly ethical issues that we need to explore –
5 the researcher’s perspective on the actions of participants forms a dialogue
6 from which understandings emerge. Meanwhile, overt participant obser-
7 vation in a field of enquiry – where the researcher clearly states their
8 reasons for involvement in the field and their research aims – will, of
9 course, alert participants to the possibilities that their conduct is being
40111 watched. Turning social contexts into research contexts raises more general
1 considerations about the nature of ‘truth’ in research and brings with it
2 a variety of troubling but often rewarding debates.
58 Approaching

1111 The ethnographic study of people with learning

2 difficulties
3 Perhaps the first issue to consider when we are looking at how ethno-
4 graphers go about doing their research is to recognise that this approach
5 digresses markedly from the classic view of the dispassionate, distanced,
6 objective scientific observer. In many ways, ethnography is about
7 immersing oneself within a culture of investigation, drawing upon a variety
8 of methods and analyses in order to tap into that culture:
1011 Wherever it has been adopted, a key assumption has been that by
1 entering into a close and relatively prolonged interaction with people
2 (one’s own or other) in their everyday lives, ethnographers can better
3 understand the beliefs, motivations, and behaviours of their subjects
4 than they can be using any other approach.
5 (Tedlock, 2001, p. 456)
7 According to Spradley (1979), ethnographic study aims to observe behav-
8 iour, but goes beyond it to enquire about the meaning of behaviour. The
9 artefacts and natural objects of a culture are described, but also consid-
20111 ered in terms of the meanings that people assign to these objects. Moreover,
1 emotional states are observed and recorded, but the ethnographer goes
2 beyond these states to discover the meaning of fear, anxiety, anger and
3 other feelings to cultural members. This all sounds rather grand
4 and abstract, wouldn’t you say? If we return to Gerry O’Toole’s story,
5 the writer of this life story had one key ethnographic research question
6 that he wanted to answer:
8 What can one life story tell us about the social and cultural worlds
9 inhabited by people with learning difficulties?
1 The term ‘learning difficulties’ is used in this chapter to describe people
2 who have been labelled at some point in their lives as requiring specialist
3 ‘mental handicap services’ (Walmsley, 1993, p. 46). This term is chosen
4 instead of other synonyms such as ‘mental handicap’, ‘mental impairment’
5 or ‘learning disabilities’, because it is the term preferred by many in the
6 self-advocacy movement. As one self-advocate puts it: ‘If you put “people
7 with learning difficulties” then they know that people want to learn and
8 to be taught how to do things’ (quoted in Sutcliffe and Simons 1993,
9 p. 23). Moreover, as we shall see later in Part 3 of this book, it is suggested
40111 that the very phenomenon of ‘learning difficulties’ is constructed by
1 institutional practices:
3 What should concern us is the mystifying fact that so many social
44111 scientists . . . do not regard mental retardation [sic] as a social and
Approaching 59

1111 cultural phenomenon. I say mystifying, because nothing in the prob-

2 abilistic world of social scientific reality is more certain than the
3 assertion that mental retardation [sic] is a socio-cultural problem
4 through and through.
5 (Dingham, 1968, p. 76)
7 Ethnography has a long history in the field of learning difficulties (e.g.
8 Braginsky and Braginsky, 1971; Edgerton, 1967, 1976, 1984a, 1984b;
9 Edgerton and Bercovici, 1976; Mercer, 1973; Angrosino, 1994; Goodley,
1011 2000). Crucially, following Whitemore et al. (1986), ethnographic studies
1 of the cultures of people with learning difficulties have illuminated the
2 socio-political, professionalised and policy-led discourses which have
3111 disabled people so labelled. The narrative in Chapter 1 aims to add in a
4 very modest way to this tradition: to demonstrate how disability discourses
5 and practices of exclusion are experienced by people with learning diffi-
6 culties. In particular, the life story reflects upon my (Dan) involvement
7 (for the past seven years) with people with the label of learning difficul-
8 ties and their aims to promote alternative disability cultures to the ones
9 that they are often forced into (see also Goodley, 2000).
Non-participatory approaches to research
3 While Chapter 1 is a reflection of ethnography as methodology, the mode
4 of research production is inherently non-participatory. In contrast to the
5 stories in Chapters 2 and 3, the emphasis in Gerry O’Toole’s narrative is
6 on the researcher’s ownership of the data collection and narrative construc-
7 tion. As we shall see in the next chapter, the stories, anecdotes, conver-
8 sational exchanges and events that form O’Toole’s life story are the product
9 of my intensive involvement with/in specific cultures of a small number
30111 of people with learning difficulties.
1 This raises a number of methodological debates, particularly when
2 research aims to capture the voices and experiences of people whose
3 agendas are often ignored by researchers. The stance here is to make use
4 of a collection of narratives that allow some insight into the specific and
5 localised life worlds or discursive spaces and material conditions of a small
6 number of people. While the mode is non-participatory – the researcher
7 works from the position of final and perhaps constant ownership of raw
8 material – the use of life story aims to emphasise the significance of a
9 number of experiences of people with learning difficulties. In this sense,
40111 while our characters have no hand in the writing of their own stories, an
1 ethnographic stance encourages the writer/researcher to try to authentic-
2 ally capture their stories in meaningful and accountable ways. Gerry’s
3 story is an attempt to authentically demonstrate not only the oppression
44111 but also resistance of people with the label of learning difficulties. We
60 Approaching

1111 return to these issues in the next chapter but for now it would make
2 sense to unpick some key elements of this approach in relation to Gerry
3 O’Toole’s narrative:
5 • The ethnographer/researcher/writer owns the writing of the story.
6 • Data collected by the ethnographer are used to inform the story.
7 • No member of the culture under investigation is permitted decision-
8 making in the putting together of the story.
9 • With ownership of the story come issues of accountability and inten-
1011 tion – which the writer would do well to address.
1 • In being non-participatory, the writer’s own engagement with know-
2 ledge generation and the applications of research often dictate the
3 writing process.
4 • The writer’s own subjectivity must be interrogated in order to tease
5 out some of the reasoning behind the writing of the story.
An emancipatory interview approach –
Rebecca Lawthom
20111 Colleen’s story is a collaborative project between the interviewer and
1 interviewee. The emancipatory framework from which this account is
2 produced allows the interviewee – or co-researcher – to shape the story,
3 have full editorial control and present a first-person narrative. Clearly, in
4 all interview techniques, there is an element of participation, namely, the
5 interviewee is exhorted to tell/account for or explain how s/he feels or
6 acts or behaves. In emancipatory research, the focus is not only on full
7 participation but ownership of the narrative. A key element of this
8 approach is the idea of emancipation, doing research ethically so the inter-
9 viewee might usefully gain something from the production. In all forms
30111 of research, the researcher always gains from the collection of data, while
1 the researched generally stands to gain far less from the research inter-
2 action. Emancipatory research in its purest form has roots in action
3 research paradigms (Duffy and Wong, 1996; Heller et al., 1984; Reason,
4 1988, 1994; Kagan, 2002) and alliances with feminist research method-
5 ologies and disability studies.
An emancipatory framework
9 What kind of paradigmatic understanding do we need to undertake eman-
40111 cipatory research? Many forms of research undertaken are conceptualised,
1 designed, executed and analysed with participants playing a role primarily
2 in the execution of the design. Within an emancipatory framework, the
3 researched may have a voice within all stages of the research process.
44111 This results in greater involvement and interest and can result in useful
Approaching 61

1111 outcomes for the participant. The voice of the researched is given a much
2 more equal weighting in the research process.
3 In order to locate emancipatory understandings, we should explore the
4 feminist influence. Feminist theory has played a huge role in contextual-
5 ising research with and for women. Feminist methodology has placed
6 much emphasis upon the role of the researcher at all stages in the research
7 and suggests a transparent approach to positioning the researcher in
8 relation to the research frame.
1011 Scientists firmly believe that as long as they are not conscious of any
1 bias or political agenda, they are neutral and objective, when in fact
2 they are only unconscious.
3111 (Namenwirth, 1989, p. 29)
5 Whilst feminism can be a standpoint, it is rather difficult to define
6 succinctly. Russell (1996, p. 248) suggests that feminism is a perspective,
7 based on a set of values, which are used to inform all aspects of prac-
8 tice. As she says:
20111 (feminism is) a way of construing the world, our experiences and the
1 possibilities which we see for the future. It is a perspective which
2 defies rigidity, while genuinely affording value to women’s experience
3 as of central importance and worth. . . . Feminism is a way of seeing
4 the world which works towards helping women take an equal place
5 in society . . .
7 Humm (1992) sums up the core of feminism slightly differently, stressing
8 the political dimension:
30111 Feminism is a social force . . . (which) depends on the understanding
1 that, in all societies which divide the sexes in differing cultural,
2 economic or political spheres, women are less valued than men.
3 Feminism also depends on the premise that women can consciously
4 and collectively change their social place. . . . (It is) a belief in sexual
5 equality combined with a commitment to eradicate sexist domination
6 and to transform society.
7 (Humm, 1992, p. 1)
9 Feminist definitions and critiques are far from uniform. Harding (1986)
40111 makes a now classic distinction between three different kinds of
1 approaches: feminist empiricist, feminist standpoint and feminist post-
2 modernist. However, whichever approach one takes, a fundamental link
3 is the relationship between the personal and the political. We will return
44111 to this in Chapter 7.
62 Approaching

1111 Emancipation and voice

2 Within the feminist arena, there have been critiques around representa-
3 tion and voice concerning authority. Whose voice is being heard and who
4 is talking or speaking for whom? (Wilkinson and Kitzinger, 1995). It is
5 possible to engage in feminist research methods both without being a
6 feminist (the toolbox approach to methods rather than methodology), and
7 without being emancipatory. To address this latter point, we can explore
8 paradigms which have actively explored emancipatory approaches such
9 as disability studies (Oliver, 1996) and community psychology
1011 (Duffy and Wong, 1996). Whilst the paradigm Colleen’s narrative emerges
1 from is emancipatory, this process was not labelled as such for Colleen.
2 Being transparent about the process, I talked in terms of dialogue and
3 interpretation. As Larson (1997, p. 459) notes,
5 When researchers share their ways of seeing, understanding and inter-
6 preting life events with story-givers, they surface the fissures between
7 their own life worlds and those of the people they portray.
9 Dialogue allows the meanings of self in relation to others and commu-
20111 nity to be negotiated (Witherell and Noddings, 1991). So the narrative
1 involves not only the story being told but the active engagement with the
2 audience. This audience design occurred both within the actual storytelling
3 episode as Colleen becomes aware of herself in relation to the co-researcher,
4 ‘I sound like a right old crock’, and beyond the immediate episode to the
5 wider audience. In terms of the latter, Collen invokes an audience ‘when
6 will people realise that women are doing a good job etc.?’ At these key
7 times, the design of the audience is undoubtedly considered as a coherent
8 story is being told. Emancipatory approaches to life story research can be
9 analysed using Ochs and Capps’s (2001) narrative dimensions. The dimen-
30111 sion ‘tellership’ is important when exploring the nature of the relationship
1 and the control/power exercised by the co-teller/interviewee. Goffman’s
2 (1959) ‘animators’ are tellers who range from recounting stories to active
3 telling in conjunction with others. Ochs and Jacoby (1997) note that the
4 role of the teller is distinct from that of the author. It is possible for the
5 author (while contributing little content to the story) to shape the story
6 with non-verbal behaviour and verbal cues of interests. Moreover, ‘the
7 authorial shaping of a storyline is not the same as physically telling a
8 story’ (Ochs and Capps, 2001, p. 24). The shaping of the tale, the editing
9 of the story and the analysis of the narration were done with Colleen.
40111 We shall return to many of the issues during analysis and interpretation,
1 but let us summarise some of the points being addressed here.
3 • Whilst the writer has the final authority regarding the story, the process
44111 is guided and shaped by Colleen.
Approaching 63

1111 • Both the story-giver and the author of the story are women, friends
2 and feminists in orientation.
3 • The writer’s political and theoretical orientations have steered or
4 shaped the course of the research (even if only unconsciously).
5 • Only data gathered for the purposes of the life story exercise are used
6 in the weaving of the story and the final product.
7 • The relationship history outside of the story must have played a role
8 in the selection of the story-giver and the latter’s presentation of the
9 narrative.
1011 • An emancipatory framework is used in a processual way rather than
1 presuming that analysis can enlighten the story-giver.
A participatory ethnography – Michele Moore
Methodologies that emerge out of circumstances
7 In these circumstances there was no time to make formal decisions about
8 appropriate research methodology. I had entered the situation with no
9 explicit research brief. I went to meet David knowing the ethnographic
20111 journey would inevitably offer rich theoretical insights for the social model
1 of disability, and knew that engagement with his story would provide
2 unique empirical evidence on the experience of living with spinal cord
3 injury. But I did not premeditate an approach to my engagement with his
4 life or foresee a strategy for ‘collecting data’. I did not know how best
5 to proceed and could not tidy emotionality out of the process.
6 There are principles which over the years I have struggled to make
7 shape my research practice. I was guided by the desire to hold on to
8 personally valued principles, to take the most open and honest and collab-
9 orative approach possible to finding out about his experience, and to seek
30111 to effect positive social change as part of the process. I knew my engage-
1 ment would produce some sort of research account and that this would
2 be problematic. I had written extensively about, and was familiar with,
3 the difficulties of the ways in which real life intersects with methodologic-
4 al aspirations and practices (Moore et al., 1998; Moore 2000). But I had
5 not faced the methodological tensions that were to surface in this project.
6 I had not known the extent to which I would conduct ‘life story research’
7 and I had not known that one possible outcome of the research could be
8 the prompting of a man to take his own life. I had a strong personal
9 commitment to the project of finding out David’s story but no idea of
40111 the personal – and collective – pain and fear, or determination of events,
1 that the project would bring.
2 ‘Methodology in life story research’, for this project, was characterised
3 by struggle, uncertainty and multiple confusions. It can be argued that
44111 the methodological approach was heavily implicated in David’s death.
64 Approaching

1111 I cannot decide who killed David Hope but I came to understand that
2 methodological orientation in the job of researching life stories had to be
3 very critically interrogated. Looking back, it is possible to recognise some
4 essential ingredients of a formal methodological approach. Since the
5 emergence of ‘participatory’ and ‘emancipatory’ frameworks as structural
6 frameworks for disability research in the early 1990s I had been convinced
7 that the only sensible starting point for advancing an understanding of
8 disability matters is one of consultation. The premise of consultation was
9 central to the way in which I approached David’s story. I had learned
1011 from disabled people of the extent to which much of the research that
1 goes on in the name of improving the quality of disabled people’s
2 lives has been done about them, without them and subsequently been
3 irrelevant and a waste of time (Oliver, 1987, 1996).
Participation in relationships
7 Therefore from the outset I made considerable efforts in my engagement
8 with David to make sure that he decided the focus of our dialogue and to
9 ensure his meaningful participation in all matters relating to the way I built
20111 up his story, the sense I was making of it and the way it would be told. David
1 established the discursive practices through which his story was revealed.
2 He refused to be interviewed in any sense. He dismissed the possibility of
3 tape-recording out of hand and obstinately monitored the notes I took. He
4 was censorious of my engagement with others who were connected with
5 his story. He had clear ideas about dissemination of his story but insisted
6 that once he was dead, if his wishes were at odds with his mother’s then
7 hers should take precedence. Questions concerning methodological tools are
8 necessarily subordinated alongside commitment to a premise of consulta-
9 tion. The whole principle of consultation is, of course, horribly contorted
30111 now that he is dead. This problem will be returned to later in the book.
1 The other chief ingredient of the methodological approach I took to
2 finding out and communicating David’s story, was defined by the core
3 theoretical position which my work promotes, namely that disability is
4 the product of social organisation and not personal limitation (UPIAS,
5 1976; Oliver, 1990). This committed me to researching David’s story in
6 an open and transparent way and to making sure the project turned on
7 his perspectives and experience. The difficulties that prevented me from
8 telling David’s story in particular ways are entangled with the social origins
9 of oppression and so the theoretical and methodological drivers in this
40111 work were very actively fused. All in all, the development of an apposite
1 methodological approach to the researching of David’s story proved a
2 fraught and uncomfortable business.
3 Thus the discourse of struggle fundamentally shaped the methodo-
44111 logical and theoretical approach I took to researching David’s story.
Approaching 65

1111 Comparatively speaking, the tensions which came together in this project
2 were – and continue to be – enormously challenging. The question of
3 how to maximise the impact of David’s story on policies and practices
4 which shape the lives of disabled people is fraught with difficulty because
5 the two principal characters in the story, David and his mother, had
6 conflicting views on its destiny.
7 David wanted his story told so that life-threatening experiences faced
8 by other disabled people are rendered more visible. Sheila asked not to
9 be involved in telling the story. When David was dying she received anony-
1011 mous hate mail. She lives every day with the pain of David’s story whereas
1 he chose death to escape the pain of the story. My original commitments
2 were to his priorities, but David confused these with clashing positions –
3111 requesting both that his story should be told, and that this mother should
4 be looked after, following his death. Polarity in his thinking put the
5 methodological direction of the project against the central proposition of
6 the emancipatory research paradigm. It has always been difficult to know
7 what to do with the story. Some of the images in David’s story create
8 barriers to the dismantling of oppression for disabled people and for their
9 care-givers. The ethical issues are deeply disturbing and will necessarily
20111 have to be revisited throughout the book.
The troubling nature of participation
4 Frequently I found myself having to creatively and flexibly negotiate diffi-
5 cult and sensitive boundaries in the researching and telling of David’s
6 story. Usually this has made my own voice too dominant and there has
7 been the temptation to be judgemental and dogmatic. At the time of
8 writing I feel very much at odds with David’s expressed views on the
9 protection of his mother which, put in the broader picture, seem to me
30111 an act of collusion in the oppression of disabled people and their fam-
1 ilies. Professionals in the story may wish to reconstruct aspects of their
2 interventions. Casting David’s experience as life story research offers some
3 potential for disentangling resistive tensions, but the task is disturbing.
4 The methodological approach I took demanded a critical purchase that
5 at the time was unattainable and in retrospect has been inadequate.
6 David’s story exposes a major question for me concerning the way in
7 which we enhance professional and academic interventions in disabled
8 people’s lives through the telling of life stories like his. I had hoped that
9 David’s story would raise his voice and raise his issues, but his absence
40111 from its authorship is problematic. Ultimately, the extent to which David
1 has been consulted in the researching and telling of his story has been
2 obstructed by his death. The measure of the project’s emancipatory prowess
3 depends partly on the value one places on his death. But partly too on
44111 what difference the telling of his story can make. I wanted to tell David’s
66 Approaching

1111 story to advance an agenda for drawing up disabled people’s futures on

2 their own terms, but the premise of consultation which is commensurate
3 with this agenda is thrown into disrepute by his death.
A non-participatory fiction – Peter Clough
7 ‘Frank’ is a fictional narrative which arises – primarily – from Clough’s
8 desire to portray the complicated personal tangles and weaves which so
9 often underlie various (more public) events in the professional lives
1011 of teachers. For purposes of distinguishing the analytical approaches
1 of the four stories, we have introduced Frank as characterised by non-
2 participatory and fictional methods of enquiry into the broadly similar
3 phenomena which each story addresses. But it will be clear from reading
4 the three previous sections of this chapter that as a composition Frank
5 sits uneasily across the distinctions we have made, perhaps most impor-
6 tantly because it makes no claim to rest on data as conventionally
7 understood. So although there may be considerable topical and formal
8 similarities between the four stories, the distinct purpose of including
9 Frank in this collection is to raise questions about the role of the author
20111 in the creation of stories (social scientific or literary) and about the nature
1 of the data which are so created. How and where do ethnographic and
2 literary composition segue into each other?
Composite narratives
6 As a composition, Frank is at its simplest one of a number of attempts
7 (see Clough, 2002) to communicate research insights in a more direct, a
8 more persuasive manner than is normally permitted by traditions of report.
9 It doesn’t exactly set aside important notions of validity and reliability
30111 and so on, but it assumes that readers attend primarily to writing as it
1 ‘speaks to’ their experience, and that analysis is part of a later moment
2 of explanation. So stories like Frank can be said to ‘work’ if readers are
3 moved to say somehow: ‘Yes, that’s what it’s like . . .’ And the character
4 Frank is a fiction, in so far as no such character ever had three-dimen-
5 sional form, and the story might well have been prefaced with ‘Any
6 resemblance to actual characters living or dead is purely accidental . . .’
7 This is, of course, one of the greatest lies ever told by writers (or their
8 publishers), for a fictional character depends for its plausibility on the
9 borrowings from ‘real life’ which their authors make (and, as Joan Didion
40111 (1968, p. xiv) says, ‘Writers are always selling somebody out.’, And Frank
1 is indeed assembled from my own experience (as a teacher, researcher
2 and writer) of people like him (or like parts of him). There are even –
3 though I cannot show you the evidence – whole phrases and sentences
44111 taken from conversation and interviews with people whom I’ve met or
Approaching 67

1111 worked with. But at the end of the day, Frank is all of a ‘symbolic equiva-
2 lent’ (Yalom, 1991), a ‘poetic composite’ (Richardson, 1994) or a ‘stereo-
3 type’ (Booth and Booth, 1998).
Fiction and analysis
7 Frank is a work of fiction, if to write fiction is to say this is how I see
8 the world; I believe these characters and events to be true of human expe-
9 rience; I believe – short of wishing to be didactic – that there is something
1011 to be learned from this story. Where Frank differs from Gerry and Colleen
1 and David, however, is that the evidence for his existence will not be
2 found outside of some posture of the nerves which allows you as reader
3111 to say ‘Yes, that’s what it’s like . . .’ You will not, therefore, validate the
4 story with reference to its instruments and the (accessible) data they gener-
5 ated, but rather verify it as it accords with your own life. Does this begin
6 to sound mystical? But look for one moment at what researchers – or at
7 least those in social science guided by broadly qualitative principles – do
8 to their data and their subjects. They seek to analyse – literally, that is
9 to say break down into their smallest elements – subjects and situations
20111 so that single, temporal truths are generated with predictive validity. And,
1 it is assumed, this is carried out without recourse to the ‘subjective’, the
2 personal; thus methodology describes an unavoidable relationship between
3 textual artefacts and their objective correlatives.
4 But we are a long way from realising that research in the social sciences
5 will only find in its theatres of enquiry what it puts there. For social prac-
6 tices, and hence social researches, are pre-eminently worlds of paid-up
7 meanings – as it were – and attributions; in experience they issue from and
8 are set about with meanings which are always ready to hand. And as
9 researchers of social practices, we ourselves give shape, weight and identity
30111 to these meanings: we do not come innocent to a task or situation of events;
1 rather, we wilfully situate those events not merely in the institutional
2 meanings which our profession provides but also, and in the same moment,
3 we constitute them as expressions of our selves. Inevitably, the energies of
4 our own psychic and social history fuel our insight, and leave traces of those
5 earlier meanings. But because the institutional drive requires a publicly
6 accountable knowledge, we resort to method to clarify – though in fact
7 mostly obscure – our true involvement. Stronach and MacLure (1998,
8 p. 35) suggest that even this methodological aspiration is deeply frustrated,
9 and indeed that
1 It is in those accounts which seem most ‘natural’, ‘transparent’, ‘real’
2 or ‘rounded’ that are most carefully wrought with a view to producing
3 just those effects in the reader – that the writer is never more present
44111 in the text than when she seems to be absent, and the subject seldom
68 Approaching

1111 less audible than when he seems to be speaking for himself. . . . The
2 appearance of artlessness is a rather artful business.
4 For we might suppose that we slip method between us and those events,
5 a sort of prophylactic which will keep them distinct from us. But this is
6 to misunderstand the nature of method and its seamless identity with what
7 it only apparently treats of. ‘[Any] science begins’, says Oakeshott (1933)
8 ‘only when the world of things opened to us by our sense and percep-
9 tions has been forgotten or set on one side’. The scientific way of seeing
1011 is identical with what it sees in its search for stability:
2 The method and the matter of scientific knowledge are not two parties
3 . . . they are inseparable aspects of a single whole . . . And the notion
4 of the categories of scientific knowledge or the instruments of scien-
5 tific measurement interposing themselves between the scientist and his
6 object is a notion utterly foreign to the character of scientific experi-
7 ence. Without the categories and the method, there is no matter;
8 without the instruments of measurement, nothing to measure. ‘Nature’
9 is the product not the datum of scientific thought.
20111 (Oakeshott, 1933, p. 37, my emphasis)
2 The datum becomes, then, not the consequence of a way of seeing even,
3 but that act itself (and as such, must be intentionally opposed to the thing
4 in itself). And in just this way are ‘social practices’ produced by research.
5 For there are no instruments, no methods prior to the function of
6 consciousness, and all instruments and measures depend for their very
7 existence on the way they serve this function. Consciousness seeks objects
8 – indeed is knowable only by the moment and way of its finding them.
9 And the whole of this experience is organised through an aesthetic.
Aesthetics and truth
3 Aesthetic attending to something is not a special or a marginal case peculiar
4 to (self-conscious) artists, but one which can be systematically developed
5 – and indeed marketed – by them only because it is the very foundation
6 of intelligence. This is to say no more than that we attend primarily to
7 objects in this way as a condition of our being in the world; we are here
8 and embodied. Such a discourse takes us away from the responsibility of
9 the author (of any report) to justify his or her claims to tell the truth,
40111 and shifts that responsibility to the moral and critical sensibilities of the
1 reader. As Sandelowski has it,
3 When you talk with me about my research, do not ask me what I
44111 found; I found nothing. Ask me what I invented, what I made up
Approaching 69

1111 from and out of my data. But know that in asking you to ask me
2 this, I am not confessing to telling any lies about the people or events
3 in my stories/studies. I have told the truth. The proof is in the things
4 I have made – how they look to our mind’s eye, whether they satisfy
5 your sense of style and craftsmanship, whether you believe them, and
6 whether they appeal to your heart.
7 (Sandelowski, 1994, p. 121)
9 If, as we said at the outset of this section, the notions of authorship and
1011 data are radically questioned by Frank, then equally some of the answers
1 to these questions – the ‘meta-story’, perhaps – reach into the epistemol-
2 ogical ideas represented by phenomenology and by hermeneutics. We
3111 return to these in later chapters (and particularly Chapter 7). What points
4 are being addressed here? By introducing the notion of fiction, we suggest
5 that there may be two parallel sets of claims:
7 It could be said that but . . .
8 1 The writer is sole author of the the reader is ‘co-writer’ if the
9 story achievement of the story depends
20111 on the reader’s ‘evidence’
1 2 The characters are fictitious they are based on ‘real’ people
2 whom the author has met
3 There are no explicit data for evidence is provided by the reader
3 the story
4 4 This is an ‘author-evacuated’ text the author has a clear purpose
7 An important factor in Frank (and arguably this applies to the other three
8 stories as well) is its location in the field of social research. Is Frank
9 research? Can it be regarded as, in any way, a form of research report?
30111 Clough and Nutbrown (2002) suggest that ‘All social research sets out with
1 specific purposes from a particular position and aims to persuade readers
2 of the significance of its claims; these claims are always broadly political’
3 (p. 4). So, by way of reflecting on Frank we can pose four questions:
5 • Is this a persuasive narrative?
6 • Is the purpose of the research and its report clear?
7 • How has Clough as the author demonstrated the positionality of the
8 narrative?
9 • In what way is the story political, and might it have any political impact?
Reflecting on this chapter
3 The scene is now set for us to unpick some of the tensions, questions and
44111 choices of method that faced us as four life story researchers approaching
70 Approaching

1111 the venture from four distinct methodological positions. The following
2 chapter will explore how we went about our methods. We do, however,
3 feel it necessary to pinpoint some key issues facing the life story research
4 in the early – and ongoing – stages of method/ology:
6 • Method/ology creates visions of its participants/informants – some
7 more real than others;
8 • Method/ology can be done alone and with others – though the former
9 does not necessarily have more of a masturbatory feel;
1011 • Method/ology grounds the researchers’ reading of present and future
1 research events, in ways that allow for/preclude possibilities;
2 • Method/ology in researching life stories is always itself a storied
3 venture.
5 With these key ideas in mind we now turn to stories of our researching
6 life stories.
Chapter 6
Method in life story research
5 The aim of this chapter is to guide you through the research stories that
6 produced the four life stories of this book. The structure of this chapter is
7 different from the previous one. Here we consider different stages of the
8 research process from four particular methodological positions. Our aim is
9 to give some specific responses to the question commonly posed by those
20111 new to life story research: ‘How do you do life story research?’ Typically,
1 perhaps, we want to throw in a disclaimer from the start. By attempting to
2 explicitly account for the use of qualitative methods, the research stories
3 we present below may present a vision of method that boasts a simple,
4 smooth, deliberate, linear and unproblematic process. This is often far
5 removed from the messy reality of life story method/ologies. In the final
6 section of the chapter, we bring back into focus the researcher’s own
7 reflections on the doing of life story research: thus exposing some of the
8 dilemmas and problematics of this approach to research.
Starting off
2 How did we come to know our characters and narrators? Let us tell you
3 how we met.
Gerry O’Toole’s life story
7 Gerry O’Toole is the embodiment of one particular ‘real life’ person known
8 to the author, recast in a variety of ways, bringing in the stories of a
9 number of other people with the label of learning difficulties. Tedlock
40111 (2001, p. 455) suggests that ethnographic writers combine personal and
1 theoretical understandings. Meaning-making is located between the inter-
2 iority of autobiography and the exteriority of cultural analysis (Tedlock,
3 2001, p. 455). In this sense, Gerry’s story is as much about the making
44111 of one life as it is the modest analysis of a specific culture. As Tedlock
72 Doing

1111 (2001) notes, ethnographic writers may conceptualise their positions as a

2 ‘marginal native’ ‘professional stranger’ or see themselves as ‘going native’
3 or ‘maintaining some distance’. The researcher here – Dan Goodley –
4 worked from a position of ‘ally and participant’. Much of the informa-
5 tion drawn upon emerged from a long-held involvement with people with
6 learning difficulties and the self-advocacy movement. ‘Gerry’ was a person
7 I got to know through my voluntary work and research.
8 He had always intrigued me. Here was a person who boasted a rich
9 and varied life. Unlike many of his peers, Gerry dipped in and out of
1011 service settings, professional cultures and institutional practices. While
1 many people with learning difficulties inhabit these contexts from resi-
2 dential home, to day centre, to charity-organised disco on a Tuesday
3 evening, Gerry entered these places only from time to time.
4 His life appeared to say something about existing differently from his
5 welfare-located peers. Maybe he appealed because his ordinary life of
6 family, friends and work seemed so extraordinary in view of many lives
7 of institutional living experienced by so many of his friends. The words
8 of Gerry’s story derive from a whole host of voices and sources including:
20111 • Research field notes from funded projects;
1 • Direct quotes from secondary sources;
2 • Anecdotes recalled by the author;
3 • ‘Personal gems’;
4 • Documents produced by people with learning difficulties;
5 • Vignettes shared by people with learning difficulties in self-advocacy
6 groups;
7 • Formal individual and group interviews;
8 • Stories from academic, policy and practitioner literature in the field
9 of learning difficulties.
1 How these data were brought together is considered later in this chapter.
2 For now it is significant to state that the raw data of Gerry’s story did not
3 emerge from a systematically devised, timetabled period of empirical
4 research activity. Instead, Gerry’s story was a long time in the making;
5 drawing upon a whole host of personal and professional experiences. Life
6 story research can and should make use of stories that might not neatly
7 fit into the empiricist view of data. Instead, we hope, readers will start to
8 re-interrogate their own collection of narratives which may well form the
9 basis for life story work. I had wanted to tell Gerry’s story for a long time.
Colleen’s life story
3 Colleen is a real character, a woman in her fifties who was and is known
44111 to her co-writer (Rebecca Lawthom). Her life story and the form of it
Doing 73

1111 arise from sustained collaboration and negotation between the narrator
2 (Colleen) and the interviewer (Rebecca). The shape and form of the story
3 were devised together.
5 Narrative activity becomes a tool for collaboratively reflecting upon
6 specific situations and their place in the general scheme of life. . . .
7 the content and direction that narrative framings take are contingent
8 upon the narrative input of other interlocutors, who provide, elicit,
9 criticise, refute and draw inferences from facets of the unfolding
1011 account. In these exchanges, narrative becomes an interactional
1 achievement and interlocutors become co-authors.
2 (Ochs and Capps, 2001, p. 2–3)
4 The life story presented is the finished product and contains Colleen’s
5 voice (clearly visible) and the interviewer’s voice (implicitly visible). The
6 life story begins with negotiation and agreement over the taping of the
7 interview or ‘chat’ as Colleen called it. The topics of the interview and
8 the form of the discussion were framed and agreed by Colleen. I asked
9 her about life stories and she immediately talked about needing to give
20111 a historical context. The story is, then, both about the present and the
1 past. I have known Colleen for around ten years and her full life story
2 was not known to me prior to the interview. Her more recent past was
3 underpinned by the rich account of her earlier life. Ochs and Kapps (2001)
4 point out that we cannot credibly reflect upon ourselves in the moment,
5 as we experience the present. Rather the non-present – the past and the
6 possible – is the context for self-making, and the most suitable genre for
7 this is personal narrative. How this material was brought together is
8 considered later in the chapter. The shape, ebb and form of the story was
9 the product of ongoing consultation and negotiation.
David Hope’s life story
3 David and I (Michele Moore) are distantly related though we had never
4 met before the occasion of this ‘study’. Thus personal and professional
5 boundaries in our relationship were always fuzzy and this greatly affected
6 the research practice. It is probably fair to say that David would not have
7 shared so much of his story with an outsider in a professional research
8 capacity. It is likely that my involvement with his family was precariously
9 situated in terms of conventional codes of professional conduct. These
40111 issues have to be acknowledged and evaluated in terms of their impact on
1 the emergent data and acceptability of the ensuing account.
2 There were advantages and disadvantageous to our complicated research
3 relationship. Without doubt the family ties were key to David agreeing
44111 to meet me in the first place, and then key to him not quite being able
74 Doing

1111 to throw me out in the way he was reputed to regularly bawl out home
2 care staff and other professionals who had contact with him. Later on,
3 in a period of considerable upheaval he had appealed to the family link as
4 a way of pinning down my commitment to him ‘Please, please ring.
5 . . . We’re sort of related . . . Please, please ring’. In other ways the family
6 tie was problematic, for example when David thrust me into confronta-
7 tions with his mother. The senior social care worker seized on our family
8 connection in different ways, sometimes as a way of undermining my
9 credibility – and conversely, when David was dying, in order to exclude
1011 me from certain information: ‘that would be confidential to the immediate
1 family’.
4 Frank’s life story
5 There are some empirical contexts for Frank. The most specific of these
6 is a teacher whom I (Peter Clough) met during fieldwork investigating
7 schools’ perspectives on Special Educational Needs policy. This turned out
8 to be an unusual respondent, for although working at the time as a class-
9 room assistant, he had until three years before been headteacher of a
large, residential special school and had taken early retirement on health
grounds following chronic nervous exhaustion. Since we were of an age
and had much to talk about in terms of some parallels in careers (and
their policy contexts), I came to know him very well, interviewing him
formally for some nine hours on tape before our clearly emerging friend-
ship seemed to render him ethically invalid as a research subject. (It was
then, of course – tape recorder strictly off – that I really got to know
8 him!) (And the ethics of Frank are discussed in the next section). Frank
9 was on a case; pursuing some inchoate connection between the events of
30111 his childhood, his masculinity, his sexuality and his choice of career –
1 and hence, what could be called his moral career.
2 I should not have noticed ‘Frank’, I suspect, had his story not fed the
3 hunch of an abiding interest in the subtle relationship between individ-
4 uals – the ‘inner person’? – and their professional careers. I was interested
5 in the apparent consistencies which existed for some between ‘what they
6 were’ and how they earned their living; and the different, perhaps inverse
7 consistencies that related the two: I have, for example, worked for and
8 with a number of people who have made their relatively distinguished
9 careers bearing badges of social justice, equality, democracy, partnership
40111 and collaboration – yet whose own practice spoke only of autocratic self-
1 interest bordering on the despotic.
2 ‘We all research our own weaknesses,’ my Ph.D. supervisor had once
3 said to me, and this resonated with the reflection that a majority of people
44111 with whom I trained for (mainstream/academic) teaching found themselves
Doing 75

1111 developing careers in special schools of various sorts, in mental health

2 institutions and in social services departments. For all this, however, the
3 primary empirical context must be, I suppose, my own life and experience.
4 As the organising consciousness here I have created a set of devices to
5 express a number of my own concerns. Frank is rather indifferently a
6 vehicle to allow me to do this.
9 Ethics
1011 Clearly, each of the research relationships outlined earlier bring with
1 them significant ethical concerns. Some might be quite explicit and would
2 no doubt be tackled well in an introductory text on qualitative methods
3111 (e.g. Bannister et al., 1994). Other ethical considerations are more implicit
4 and less easy to deal with. We will be coming back to these ethical ques-
5 tions throughout the book – particularly in Chapter 11 – but for now,
6 here are some ethical starters.
9 Ethics with Gerry O’Toole
A non-participatory ethnographic approach to life story research raises a
number of ethical considerations. Since the author is the writer of the
narrative, issues of anonymity and confidentiality take a particular slant.
Gerry O’Toole is a fictional name. He is based primarily on one person
known to me (Dan) as a consequence of different research projects and
6 involvement with a number of groups of people with learning difficulties.
7 But, and there are many buts here, his ethnicity has been changed. His
8 appearance described differently. His family details altered. As the story
9 develops, so to does the making of Gerry. Although the original person
30111 on which Gerry is based dominates the characterisation, by the end of
1 the story, there are remnants of other people (with learning difficulties)
2 known to the author. He has moved, to some extent, from real to fictional
3 – though he still feels very real. In terms of confidentiality, all the stories
4 emerged in public settings. No experiences used were from confidential
5 professional case notes or legal documents. Moreover, the finished narra-
6 tive includes stories that were shared in desperate times. Tellers of some
7 of the stories would never have known that their disclosures would become
8 part of a public document. This raises uncomfortable issues for researchers.
9 What right do we have to voyeuristically forage for neat soundbites and
40111 distressing experiences to inform our life story work? There are no clear
1 and easy answers here – ethics are always open to debate and constant
2 appraisal. There are three points here that may in some way tackle
3 these concerns. First, as anonymity is maintained and fictional devices
44111 are employed, so the stories do remain confidential to the original tellers.
76 Doing

1111 It would be impossible to unearth from where the accounts exactly came,
2 unless the author was subjected to interrogation. Second, it should be
3 remembered that stories are in a constant state of becoming (Turner,
4 1991). While a vignette may recall the indignities of, for example, being
5 denied opportunities at school, who is to say that the person on whom
6 the story is based is still in similar stifling environments? Third, and crucial
7 to life story work that blurs research and practitioner roles, many accounts
8 of discrimination recalled in Gerry’s story originate from the real experi-
9 ences of people who have, since the time of telling their accounts,
1011 challenged disablement through their involvement with self-advocacy. This
1 point about resilience leads to a further consideration in relation to ethics.
2 Plummer (1983, p. 111) encourages life story researchers to ‘get your
3 subject’s words, come to really grasp them from the inside and then turn
4 it yourself into a structured and coherent statement that uses the subjects’
5 words in places and the social scientist’s in others but does not lose their
6 authentic meaning’. This notion of authenticity is a key concern for non-
7 participatory ethnographic approaches. One key aim was to capture the
8 resilience of Gerry (and his peers such as Maddie Harrison) in the face
9 of many disabling barriers. On writing the story, then, the author owned
20111 the narrative in ways that highlighted the human spirit in the face of some
1 of the most appalling examples of discrimination. While the author’s
2 voice dominates, it is hoped that the resilient acts of people with learning
3 difficulties are authentically articulated.
Ethics with Colleen
7 The ethics of an emancipatory interview approach are complex. Although
8 the collaborators can work and piece together a negotiated narrative,
9 issues of confidentiality and anonymity are key. Emancipatory interview
30111 approaches should always be guided by the interviewee in terms of focus
1 and content. Moreover, the life experience that is being drawn upon is
2 always owned by the interviewee and no amount of clarity, ethical under-
3 taking and transparency can subvert the narrator’s wish to tell a good
4 tale. Ochs and Kapps (2001) make a distinction between narration –
5 telling a good tale – and narratives: the latter can only be fragmented
6 intimations of experience. Young (1987) notes that telling surely assists
7 the construction of a tale but the tale necessarily lies beyond the telling.
8 Bearing these point in mind, I (Rebecca) exercised some caution around
9 family details, geographical attachments and employment history. Working
40111 with the narrator, we chose alternative names, places and workplaces.
1 The length of the original life story gave many possibilities for paring
2 down details. Working with the narrator, we omitted certain experiences
3 and highly sensitive information and allowed others to stand unadulter-
44111 ated. Storytellers naturally wish to position themselves as moral persons
Doing 77

1111 (Ochs and Kapps, 2001). However, this is tempered by the natural instinct
2 to tell stories, experiences and encounters which are atypical. With these
3 tensions in mind, we need to consider the sensitive nature of life story
4 work and in particular the personalised and difficult experiences that we
5 might unearth. For these reasons, the key ‘ethics committee’, so to speak,
6 was the narrator herself. She moderated, omitted and changed details of
7 her life that she felt uncomfortable in presenting. The finished narrative
8 is woven from the reality of lived experience with sometimes fictional
9 names and places.
Ethics with David
3111 David would not let me (Michele) tape a single word of his story. His
4 reserve was not simply that he did not trust my assurances of confiden-
5 tiality, although lack of trust in me certainly figured as a real barrier. The
6 reason he did not want tape recordings made was because he could not
7 exert any physical control over the actual tapes. If I had left tapes with
8 him, he could not prevent anyone who so wished from picking them up
9 and taking them. He could not listen to them himself without someone
20111 setting up and operating his equipment and so had little possibility of
1 keeping the material private. In addition to this, there was an intercom
2 between his room and other rooms in the house to enable David to call
3 for assistance if needed. However, he had no control over switching this
4 on or off. He often felt the intercom was being used to monitor his conver-
5 sation. He often spoke in a barely audible voice in order to avoid being
6 overheard and tape recording would have been difficult because of this.
7 David could not open or hold his own letters. This meant he did not
8 wish me to take verbatim or extensive notes because he could not look
9 over or edit them in private. If I needed to write to him, I had to write
30111 my name on the outside of the envelope so that family and caregivers
1 knew not to open it. He would wait for a trusted assistant to come on
2 duty before allowing the mail to be opened. At first I thought the
3 constraints he imposed on the research process were overly mistrustful
4 but in time I came to realise the importance he attached to retaining
5 control of that process. Retaining a position of power over the research
6 process enabled David to occupy a position of resistance over potential
7 misuses and abuses of his story.
8 The difficult ethical questions arise now that he is dead.
9 Confidentiality was always an impossible goal in this work. For reasons
40111 such as have already been given, his physical condition meant that no
1 information could be imparted between us without involving a third party.
2 I was not entrusted with his confidence for a long time during the story’s
3 unravelling and have only scraped together a feeling that he had entrusted
44111 me by default and observation rather than by explicit agreement. In
78 Doing

1111 addition, the uncommon nature of David’s situation has always meant
2 that his confidences would be revealed should his story be told, as his
3 identity is instantly recognizable to those who know of him. I have never
4 negotiated any agreement on confidentiality relating to David’s disclosures
5 with his mother. I have never disclosed to her most of what he actually
6 told me because he said it would break her heart and she had to be
7 protected from any sense that she was personally responsible for his demise.
8 I cannot check out with him the ethical questions that concern me over
9 the construction and telling of his story. To summarise the overriding
1011 dilemmas:
2 • David said he wanted his story told.
3 • Sheila originally said she did not want his story told but after his
4 death accepted that it should be told because David wanted it told
5 and because she came to believe that the telling of David’s story might
6 help to alleviate tragedy in the lives of other families.
7 • Michael (Sheila’s husband and David’s Dad) told Sheila – but not me
8 – that she is not to be involved in any writing about what happened
9 to David. He wants the story buried.
1 I have never spoken to Michael about any of this. He originally ignored
2 and later objected to my involvement in David’s life to the extent that if
3 he was due home for his lunch when I was with David then I was sent
4 around the corner to sit in the park until he was out of the house. Ethical
5 confusions like these do not magically resolve themselves. Instead I attempt
6 to own up to them, sticking by my decision to tell David’s story (A)
7 because he wanted it told and (B) because to conceal the story would
8 bolster up professional policies and practices which generate a death-
9 making process in disabled people’s lives. Ownership of this story has to
30111 be mine – because David is dead and cannot claim it for his own and
1 Sheila is excluded both from telling this story, and in a very real sense
2 from knowing this story, by Michael’s opposition to its existence.
Ethics with Frank
6 What ethical questions surrounding the making and uses of fiction arise
7 particularly in Frank? I (Peter) want to argue here that, since this is fiction,
8 and claims to be ‘about’ no single person, but rather ‘about’ my own
9 consciousness, the ethical issues which arise in the writing and publica-
40111 tion of Frank are different from those attended to in the cases of Gerry
1 O’Toole, Colleen and David Hope. I want to argue that, but I can’t. For
2 though I claim this to be fiction, there are sources and settings and events
3 and words which belonged (some time ago) to other people. I have taken
44111 my relationship with a man who trusted me (first as a researcher and
Doing 79

1111 then as a friend) and used it as a device through which to work out some
2 of my own ‘streams of consciousness’. I have (earlier) referred to this life
3 which I have called Frank as a vehicle – a writer’s trick. I have decided
4 to call him Frank, I have brought in bits of lives (others’ lives), I have
5 rendered this story this way. I have chosen those themes. My responsi-
6 bility as a writer, if I am to ‘sell anyone short’ as Didion would say, is
7 to ensure that they do not know I have done so.
8 As far as confidentiality is concerned, my chief concern in assembling
9 Frank is only that no one should see him or herself in it. However, is
1011 there a question raised here? Is there a different – and arguably more
1 important – ethical responsibility, as it were, to myself? Not least since
2 this ‘self’ is created in a social world inhabited by my family and friends.
3111 This is further complicated by the positioning of ‘me’ in Frank as a char-
4 acter. Sometimes I wear a disguise – sometimes I am ‘me’ as others might
5 know me – at other points I have used ‘me’ as another fictional character
6 – another device with which to make a point. At the time of writing
7 I am still exploring these ethical tensions, well aware of the difficulties
8 experienced by writers such as Philip Roth, Hanif Kureshi, Martin Amis
9 and James Joyce, to name but a few.
How we wrote the stories
3 Behind the writing of any story is a writer. An obvious statement, perhaps,
4 but researching life stories asks questions of the in/deliberate hand of
5 the researcher. Walker argued in 1981 that much is written about the
6 processual nature of methods but very little about ownership, subjectivity
7 and decision-making (often on the hoof) in the doing of method. We now
8 aim to demystify some aspects of our storytelling.
Writing Gerry O’Toole’s story
2 The process of writing started with typing up a whole collection of
3 vignettes. This included drawing upon a variety of sources, following
4 Clough (2002): see Table 6.1.
5 In bringing this material together, two concerns were addressed. First,
6 the narrative had to answer the research question detailed in the previous
7 chapter:
9 What can one story tell us about the social and cultural worlds inhab-
40111 ited by people with learning difficulties?
2 This question directed the writing of the story. Secondly, I (Dan) had
3 made decisions about how the narrative would look. There was a focus
44111 on producing a life story about Gerry, peppered with vignettes about some
80 Doing

Table 6.1 Writing Gerry O’Toole’s story
3 Source Example
5 Research field notes As I entered the outdoor market, Gerry was, as always,
from funded projects conspicuous. Red, white and black bobble hat that just
6 hid his long straggly thinning hair.
Direct quotes from ‘We don’t want to be called mentally handicapped.
8 secondary sources We’re just as good as anyone – maybe a little bit better’
9 (Maddie Palfreeman, 4th International People First
1011 Conference report)
1 Names and reference changed
2 Formal individual ‘[Brid pushes David into the cubicle, David covers his
3 and group interviews face with his lower arms]
4 David: No . . .
Brid: Jano’ shut the door.
5 Story from interview now dramatised as script.
Anecdotes recalled ‘These are my precious stories. Event that shaped me.
7 by the author, You won’t have heard of them. It’s time to start
8 including ‘personal listening to what we have to say. Sooner or later,
9 gems’ you’ll listen. You will have to’
20111 (Speech heard at Conference, Scotland, 1998)
1 Extracts from the ‘Frog’, Ian shouted, ‘Frog’. The gang fell about, giggling.
2 author’s own life story (‘Frog’ was all Ian really said, that and ‘I love Chris
3 Tipping’, much to Tipping’s embarrassment. He once
spent the day spray painting ‘I love Tips’ on lampposts
4 around the town.
Documents produced ‘Dear Editor
6 by people with I am writing on behalf of Partington People
7 learning difficulties First group . . .’
8 Letter to a local newspaper, anonymised
9 Narratives from ‘Imran found an old lighter in the supporter’s car.
30111 author’s publications He asked if he could have it. The supporter, Dan, gave
1 it to him with a patronising warning, “Now don’t go
2 burning down your mother’s house, will you?!”
He looked at Dan with despair and retorted, “I’m not
3 fucking stupid, you know” ’
4 Extracted and rewritten from Goodley, 2000
5 Vignettes shared Sarah: I have finally moved from my group home.
6 by people with One of the other residents was ‘touching me up’.
7 learning difficulties That’s how my sister’s friend Julia explained it.
8 in self-advocacy groups
9 Academic, policy and ‘But the reason you feel like you do is less to do
40111 practitioner literature with my “condition” or “label” . . .’
1 in the field of learning A paraphrased version of Abberley, 1987, p. 18
3 Fiction to enhance Gerry’s account of his family and his father’s death
Doing 81

1111 of the real experiences of people with the label of learning difficulties.
2 The author wanted others to enter his story: either directly through him
3 ‘remembering’ the experience of a friend (in order to include research
4 notes by the author) or indirectly through the insertion of another’s expe-
5 rience to provide further background to an area of life alluded to by Gerry
6 (allowing the author to present a personal anecdote). In terms of presen-
7 tation, Gerry’s life provides the backbone to the story, with other ‘empirical
8 material’ being inserted in italics throughout to build up the narrative.
9 This second concern focuses on how narratives are constructed: their
1011 literary qualities and readability. A number of strategies are employed.
1 These include:
3111 • Borrowing from writers such as Tony Parker (see Parker, 1963, 1990),
4 whose style of opening paragraphs is to present answers to interviewer
5 questions (though we never hear the question):
7 ‘My background? What? Oh . . . family. Ha! You’ve opened a
8 can of worms there!’
20111 • Importing theoretical literature into the narrative, for example through
1 paraphrasing disability studies literature on the sociology of impair-
2 ment (Abberley, 1987):
4 ‘But the reason you feel like you do is less to do with my “condi-
5 tion” or “label” . . . and more because of the world around us
6 that creates me in its own vision.’
8 This is a paraphrased version of Abberley (1987, p. 18): ‘By
9 presenting disadvantage as the consequence of a naturalised
30111 “impairment” . . . legitimates the failure of welfare facilities and
1 the distribution system in general to provide for social needs, that
2 is, it interprets the effects of social mal-distribution as the conse-
3 quence of individual deficiency.’
5 • Narrating the experiences of others, with these experiences appearing
6 as stories in their own right within the wider narrative:
8 ‘She never said much about her time there but I know from others
9 that she was made to wear weighted boots in institutions and
40111 they used to drug and hit her.
2 A zillion dormitory keys held menacingly by his side. My brave
3 face as Mogadon kicks in. On to avant-garde dance troupes and
44111 loud meetings of comrades . . .’
82 Doing

1111 The aim here was to have a strong life story of Gerry with additional
2 narrative components which added to this account, by capturing ethno-
3 graphic moments in the frozen text of a life story (Sparkes, 1994).
6 Writing Colleen’s life story
7 Schwandt (1997) notes that social enquiry ‘is not a form of inquiry on
8 human action as much as it is inquiry with human actors’ (p. 63). The
9 process of constructing the narrative began with knowing and identifying
1011 a collaborator or co-researcher. Having known Colleen for a period of
1 time, I (Rebecca) approached her and asked how she felt about working
2 together on a project. I outlined the way in which the process might work
3 and the eventual outcome or product which would emerge. We met up
to talk about the process and ideas about how to handle difficulties (should
they arise). Once she had agreed to work together, I started to think about
possible areas we could discuss and showed Colleen the possibilities.
Certain aspects of her personal life (current relationship and sexuality)
were considered by Colleen to be less central to her story. She wanted to
concentrate on how she got to where she is today. This feature of linear
storytelling is a common method of sense-making. The discussion on which
we founded the life story took the form of a taped conversation. Clearly,
this conversation had an explicit purpose and an implicit agenda for both
Colleen and myself. The discussion took one hour and three quarters and
5 focused on childhood, young adulthood and the present. Mischler (1986,
6 p. 69) points out that
8 we are more likely to find stories reported in studies using relatively
9 unstructured interviews where respondents are invited to speak in their
30111 own voices, allowed to control the introduction and flow of topics
1 and encouraged to extend their responses.
3 Following the loosely structured conversation, I transcribed the tape and
4 sent the full, unedited transcript to Colleen. Before we embarked upon
5 joint collaboration, she needed to make any edits she felt were compro-
6 mising and/or identifying. Once this process had been completed (with no
7 changes from Colleen) we met and talked about the data/story and its
8 form. Colleen was surprised at how ‘interesting’ it was and how much
9 change and transition had occurred in her life. I outlined how we might
40111 shape the raw data into an actual narrative by eliding questions and
1 answers together and pasting experiences together. A few examples will
2 make this process more real. The nature of the relationship between the
3 author and narrator is close historically and made formal interviewing
44111 redundant and potentially false. The conversation we taped focused on
Doing 83

1111 Colleen’s life story but, at times, my voice would finish off utterances,
2 check facts, agree verbally or join with her in laughter.
4 Colleen: ‘Certainly if you hadn’t got married by the time you were
5 20 you were definitely thinking . . .
6 Rebecca: . . . you were going to be left on the shelf . . .
7 Colleen: and I remember when I got pregnant at 25 I was old. My
8 mother definitely thought there was something going on.
1011 A key thread throughout the story was the strong work ethic of her
1 family together with some social kudos that this bestowed upon them. The
2 work experiences of both her parents and herself were key resources in
3111 this tale, both as comparators of success and as indicators of difference.
4 I worked with Colleen to extract these and paste them together at particu-
5 lar points in the tale. I showed Colleen the reworked version and she agreed
6 that the changes made the story more coherent. Within an emancipatory
7 framework, questions about ownership are key issues to be discussed and
8 debated. I wanted a narrative that made sense both to the narrator and the
9 researcher. Colleen wanted an interesting narrative. We reworked the ori-
20111 ginal transcript into a lengthy story and then together edited it, both to
1 avoid repetition and to make sense of her experience. At times, my desire
2 to intellectualise comes across and is ignored (thankfully):
4 Colleen: I just needed to see if I could do something away from there
5 where no-one knew you. You could be a new person.
6 Rebecca: What sort of person could you be, how did you present
7 yourself?
8 Colleen: I wasn’t bothered about talking about family or what I did
9 at home so I just had like another little life. I enjoyed it, I enjoyed
30111 it too much apparently because I split up with my husband and I
1 think it was going back to work that really did it I think, realising
2 what a big mistake it all was, really scary.
4 At other times the story shifts towards less central themes. Colleen at one
5 point talks in depth about her current work situation and the position of
6 her colleagues both at work and in the domestic arena. When reading
7 this back together, Colleen noted that this seemed out of place and not
8 very relevant to the story. We agreed to cut this section out completely.
9 I was reminded here of Baker’s (1995) comment regarding life story
40111 research, that story-givers know ‘the whole iceberg, not just the tip’. Was
1 Colleen satisfied with the account or simply attuned to the need to present
2 the tip? Undoubtedly, at the end of the process of editing, we can discern
3 the tip, but, hopefully, the transparent process also allows the iceberg to
44111 be partially uncovered.
84 Doing

1111 Writing David Hope’s story

2 The writing of David’s story was a long time coming. I (Michele) had always
3 known that the telling of the story would one day be necessary. Through
4 the writing of David’s story it was hoped to advance strategies of personal
5 and social resistance for men with spinal cord injury through exposing and
6 problematising the overriding medical construction of his ‘problem’. But
7 knowing David’s story, having a key position in relation to the production,
8 dissemination and maintenance of his story after his death, combined with
9 the subsequent chapter of my own life and its entanglements with the story,
1011 placed a block on my capacity to write it and, sometimes, even to think
1 about it.
2 I have always been afraid of writing David’s story. Afraid of a moral
3 reaction in relation to my own involvement, but more afraid of the impli-
4 cations of misrepresentation for him, albeit implications that would only
5 ever impact on individual and collective memories of him. And afraid,
6 too, of the way in which telling the story, particularly via the relatively
7 fixed and permanent medium of print, could impact on the circum-
8 stances of his mother’s life, and the lives of others implicated in my version
9 of the story, my telling and my analyses. There is a regrettable source of
20111 solace in the knowledge that David’s family and friends are unlikely to
1 stumble across the story in this text. I admit to cowardice in this account
2 of how I wrote the story.
3 As already explained, the material for this story was assembled through
4 the adoption of pluralist and eclectic approaches to capturing David’s
5 words, his perspective and his experience. Many of the hallmarks of
6 conventional research practice could not be adhered to in this work, for
7 David placed conventional interviewing and observation strategies off-
8 limits. He refused to allow recording of his words, objected to all but the
9 most cursory of notes being taken and refused to allow me to access any
30111 sources which could offer potential triangulation or verification of what
1 he told me. For example, I once asked him if I could scrutinise his medical
2 records after his death, but he did not want this as he would be in no
3 position to refute what might have been written about him. He did not
4 want me to discuss his disclosures with other people.
5 Most of the notes were made about half an hour after I left him, usually
6 in a nearby car park where I stopped to scribble as hard and fast as possi-
7 ble. Occasionally he let me write down something he had said verbatim,
8 for example when he said, ‘It wasn’t breaking my neck that made me break
9 down.’ I put in a plea to be able to quote him on that. The one exceptional
40111 source of transcription has come from messages David left on my office
1 answer machine: ‘You might have saved my life mate . . . or you might not’
2 is a straight transcription from tape. So is the dialogue quoted when he
3 phoned to say ‘Ring as soon as you can . . . Please, please ring’. After the
44111 inquest, various relatives sent on a newspaper clipping. I made notes of my
Doing 85

1111 interactions with various professionals and with people who advised me.
2 The ‘having looked over the edge you owe it to all of us to look over again’
3 speech was transcribed word for word.
4 Many researchers do, in reality, work in a similarly ill-defined and nebu-
5 lous way. For example, ‘convergent interviewing’ is a widely used method
6 which deliberately begins in an open-ended way in order to maximise the
7 extent to which the data can be generated by the respondent’s experience
8 and not led by the researcher’s questions. Nevertheless, such methods
9 usually involve some level of structured process even if the content is
1011 unspecified (e.g. Dick, 1990). Similarly, researchers often have nothing to
1 do with systematic note-taking procedures, arguing that these distract from
2 the ambience of research relations and is intrusive (Glaser, 1998). However,
3111 I wasn’t familiar with these communities of research practice at the time
4 and felt the way of working to be unprincipled and chaotic.
5 For a long time it was impossible to draw the material together. Then,
6 within weeks of David’s funeral, I gained new knowledge through my
7 own experience of mothering which completely transformed my engage-
8 ment with what happened to him. My new baby son could not feed and
9 was fighting for his life in intensive care. Not being able to make him eat
20111 was devastating. Sheila had been legally obliged to prepare and offer David
1 every single meal he refused over the four months it took him to die and
2 this she had done. I came to glimpse her anguish through a different dark-
3 ness and needed a great deal of time to grapple with the shifting landscape
4 of my commitments in the story. Part of the struggle simply to begin
5 writing, involved trying to reconcile my powerful position as a researcher
6 and writer with a newfound powerless position as a mother and would-
7 be children’s ally (see also Moore and Dunn, 1999). This shift brought
8 radical changes in the telling of the story.
9 Eventually I wrote a story chronologically. I tried faithfully to get across
30111 as much as possible about what David told me and what he prioritised,
1 but the story is hugely contestable. I stuck to my original theoretical inclin-
2 ation, which was to tell the story in order to reveal the social construc-
3 tion of David’s disablement, oppression and ultimate exclusion. En route,
4 dramatic shifts in my own experience and understanding inevitably mean
5 that I narrate the story differently today in contrast to when it happened.
Hence the potential of a given theoretical framework as a resource for
constructing and making sense of a story is not fixed.
9 Writing Frank
40111 I (Peter) wanted to use ‘Frank’ – to open up three themes of ‘method’:
2 1. Is Frank a story?
3 2. The commission.
44111 3. The conclusion.
86 Doing

1111 Each of these themes is identified and illustrated in Table 6.2 in terms of
2 three key facets of the writing of Frank: the literal (what appears in the
3 story); the construction (the devices used to locate it in the story); the
4 derivation (the events, experiences and thoughts that might have lead to
5 this element being here).
7 Table 6.2 Writing Frank
9 Of method . . . The literal The construction The derivation
1011 Is Frank a story? The Frank I have chosen The diaries came
1 narrative is here to let the from a creative
2 basically an diary entries writing course that
3 edited version speak for I attended.
of diary entries. themselves.
5 The commission ‘Much of his diary ‘Frank’ felt his My own reluctance
6 was turgid – dry, jottings were to keep diaries; my
yet these important enough own understanding
7 pieces – those to ‘do something of the use of
8 that made me with’. He had personal writing –
9 read on . . . they read one of my and my diffidence
20111 said something – published stories about ‘doing
1 might speak?’ – knew (I think) something’ with
the character ‘Frank’s’ diaries
2 from which Rob come together
3 (Clough, 2002) here.
4 was derived.
5 The conclusion There are two These two The piece finishes
6 conclusions; conclusions with the two
7 Frank’s (I don’t come together conclusions because
8 know why I never in my idea that I wanted to convey
9 – really – loved this is ‘Frank’ both ‘Frank’s’
other men), and seeking his own desperation to have
30111 mine: I phoned therapy. his story ‘told’
1 him a few weeks and my reluctance
2 later – said I to accept his
3 couldn’t make commission.
4 the diaries into
a story. I told
5 him they might
6 speak for
7 themselves – but
8 that they needed
9 ruthless editing.
‘Do it,’ he said.
40111 I had not warmed
1 to him.
Doing 87

1111 Engaging with informants in the writing of

2 the process
3 Researching life stories brings with it relational baggage. And when we
4 cast our stuff around the methodological lumber room, we are reminded
5 of the things that used to make us feel, of events that are hard to relive
6 and, fundamentally, of how we were with others in our lives. This section
7 aims to do a bit of relational spring cleaning.
1011 Engaging with Gerry O’Toole: a non-participatory
1 approach
2 One conclusion from reading the process of methodology and method
3111 already accounted for in this and the previous chapter is that no engage-
4 ment took place with Gerry whatsoever. It has been argued earlier that
5 in the process of writing the story he closely resembles one individual
6 known to the author (Dan). This individual was never approached
7 about the writing of a story. If I had approached him then I could have
8 adopted, for example, the emancipatory approach detailed earlier.
9 However, Gerry’s story reflects a non-participatory approach to life story
20111 research that precludes the physical involvement of participants. But, in
1 terms of engagement, I feel it necessary to reconceptualise the problem.
2 Booth and Booth’s (1994, 1998) work is important here. In some of their
3 interviews with parents with learning difficulties (1994) and their children
4 (1998), they became increasingly concerned with the nature of voice in
5 narrative research. In particular, they ask what is to be done with people
6 who lack a ‘voice’. While Plummer (1983) argues that articulacy is a
7 necessary resource in narrative production, questions remain about how to
8 articulate less strong voices. When we mention ‘voice’ we can be referring
9 to inarticulate people or to people whose stories are not often documented,
30111 publicised, listened to and afforded significance. One aim of writing Gerry’s
1 story was to capture some voices from society that so often remain
2 untouched. The terms of engagement involve utilising the medium of life
3 story research to document the many voices that exist in the primary
4 character’s lifeworld. Fiction, as the Booths argue, permits the writer to
5 communicate voices via plot, narrative and characterisation in ways that
6 keep authenticity and permit access to ill-considered lifeworlds. Indeed, as
7 fiction brings in many characters to the plot, so perhaps readers are drawn
8 to other characters: Gerry permits the introduction of comrades such as
9 Maddie. Here the multiple voices of the narrative raise another notion of
40111 engagement. Gerry was engaged with, but in ways that aimed – method/
1 ologically – to voice his experiences and relations with others. The person
2 on whom Gerry is based is not a chatty chap – though his busyness and
3 full life cry out for words to articulate their energy. The aim was to breathe
44111 some words into lives that so often do not rely on the spoken word.
88 Doing

1111 Engaging with Colleen: an emancipatory approach

2 My (Rebecca’s) relationship with Colleen existed prior to the research and
3 thus ‘working’ seems not to fit the encounters we had. Rather, we trans-
4 lated aspects of our relationship into a working alliance. We discussed the
5 clear outcome for the author in terms of an academic output (the book)
6 and also explored what Colleen might have gained. She talked about con-
7 fidence and the cyclical nature of her life (‘come round full circle’) which
8 allowed her to make sense of her journey. In true emancipatory approaches,
9 the nature of the outputs are jointly decided by co-researchers. However,
1011 this differed slightly in our encounter, as I wanted to use the final story in
1 this book and Colleen enjoyed the process of reflexivity. At no time during
2 the process did I use the word ‘emancipatory’ or enquire as to Colleen’s
3 subsequent ‘emancipation’. The focus of the story itself was emancipatory
4 and this feature of change and growth was recognised by both parties. Here,
5 I am not claiming any special power of enlightenment or empowerment –
6 indeed power was not mine to give away. Rather, the process itself was
7 collaborative and emancipatory in content and process.
8 The analytical work undertaken following the drafting of the story is
9 informed by the voice relational approach developed by Brown and Gilligan
20111 (1992, 1993) and Brown et al. (1989, 1991). This method arose from exten-
1 sive research on girls and women within education and developmental
2 psychology. Rather than seeing the self as predominantly rational, unitary
3 and independent, voice relational methods arise from a relational ontology.
4 Ruddick (1989) and others have posited the notion of selves in relation to
5 others, embedded in a complex web of intimate and larger social relations.
6 Brown and Gilligan were concerned about the lack of ‘voice’ in their research
7 work with girls and young women. They developed a collaborative approach
8 which aimed to explore individuals’ accounts in terms of the relationships to
9 people around them, and their relationships to the broader social, structural
30111 and cultural context. The voice relational approach exposes the nature of
1 the relationship between the researcher and the researched.
It’s an attempt to work as a writer would work, by giving people
their voice, by giving ourselves a voice in our work and then thinking
consciously about the orchestration of the pieces we write.
(Kitzinger and Gilligan, 1994, p. 411)
7 This orchestration, this piece reflects the input of both Colleen and myself.
8 Moreover, Colleen’s participation has been key to the design, form and
9 outcome of the process.
2 Engaging with David: a participatory approach
3 The ultimate goal of emancipatory research practice, as first advocated in
44111 a special issue of the international journal Disability, Handicap & Society
Doing 89

1111 in 1992, is that a project should seek ‘to further the interests of “the
2 researched” ’ (DHS, 1992, p. 162). In disability research, the interests of
3 ‘the researched’ cannot be presumed by non-disabled researchers, but must
4 be established by direct consultation with disabled people themselves. In
5 my (Michele’s) work with David he articulated his interests in ‘the research’
6 as being to help other disabled people avoid the pitfalls of his life. In a
7 sense I have subjugated these interests by referencing the social model of
8 disability and turning the central gaze of the research interest away from
9 individual disabled people and towards other people who must act to
1011 resist the construction of disablement. Hence, the politics of emancipation
1 are confused in this work.
2 Less ambitious claims, too, for disability research practice to be ‘partic-
3111 ipatory’ (Zarb, 1992) and to involve disabled people in projects in
4 meaningful ways, whilst taken seriously in the beginning, have eventually
5 been set aside. None of the key informants have been engaged in the
6 writing of this story. I try to claim good reasons for the lack of partici-
7 pation in the story-telling – David is dead, Sheila would be upset by the
8 intended revelation of aspects of this shared experience – but these are
9 weak and unsophisticated claims. And so for all that I assert allegiance
20111 with participatory and emancipatory disability research paradigms in the
1 production of David’s story: involvement of the key informants has been
2 at best uncertainly negotiated and at worst abandoned. However, as with
3 the writing of Gerry O’Toole, while the here and now of method/ology
4 might seem non-participatory, the end product (the story) aims to capture
5 the participatory actions of David and others in the doing and telling of
6 his life. While we return to these concerns later on in the book, it would
7 seem unproblematic to say that participatory approaches are involved not
8 simply in the doing of method/ology, but are also bound up in the wider
9 project of researching life stories.
Engaging with Frank: A literary theory approach
3 Much of life history work (e.g. Goodson and Sikes, 2001) has at the very
4 least an implicit social determinism. One of the things that is attempted
5 in Frank is to move more towards an implicitly psychoanalytic stance
6 (though this is clearly no less deterministic); so Frank highlights those
7 ‘truths’ of hidden human consciousness. What is distinctive about Frank
8 (in comparison to other life-historical work ) is that it fits more with the
9 genre of the modern novel: it is confessional, intrusive, introspective and,
40111 as Murdoch says (in Bradbury, 1975), ‘quasi-allegorical and crystalline’.
1 I (Peter) have already illustrated how the structure and devices of Frank
2 have been created as a parallel text; but alongside the text to be found
3 in the construction of the narrative which is Frank are – I think – four
44111 substantive issues:
90 Doing

1111 • The father

2 • Religion
3 • Sexuality
4 • Roots.
6 Table 6.3 explains the literal, the constructional and the derivational
7 factors of the four themes.
Reflections on the research process
1 This has been a long chapter. We now take stock.
Reflecting on the writing of Gerry O’Toole – Dan
5 The first thing to note about writing life stories is the author’s intent.
6 Tedlock (2001, p. 459) notes that since readers derive meanings from a
7 text that are shaped by the discourse communities in which they are based,
8 ethnographers must have some idea as to what discourse communities
9 they are hoping to address. Gerry’s story was written with an interdiscip-
20111 linary audience in mind, who may not have previously come across (the
1 stories of) people with learning difficulties. But there were also theoret-
2 ical and epistemological intentions in mind – in relation to disability,
3 impairment and resilience – which I attempt to unearth in the next chapter.
4 For now it would be useful to reflect upon the method/ological venture
5 that led to the writing of Gerry’s story.
6 What about the role of participants in the process of research? Is it
7 ethically, morally and politically right to treat our participants as passive
8 elements of a culture to be understood by the all-knowing researcher?
9 Various critics from feminism (Stanley and Wise, 1993) and disability
30111 studies (e.g. Oliver, 1996) have argued vehemently against such a non-
1 participatory approach to research. It is sadly ironic to observe researchers
2 (who are committed to making sense of social inequalities) adopting ethno-
3 graphic research, which then reproduces other power relations (between
4 the researcher and the researched). But such a view of power is rather
5 simplistic. Life story research not only illuminates notions of method/olog-
6 ical power but also power as imbued in the representation of realities via
7 a narrative. When Gerry’s story succeeds it does so in ways that raise
8 voices to the fore, out of hidden cultures, into the (supposedly) more
9 hallowed arena of research text. Here, then, Gerry and his peers are
40111 permitted a place in such an arena without having to waste their time
1 physically being in it. Who wants to do research? Is it really that crucial
2 to ensure that everyone enters the research arena? Does it not segregate
3 and categorise people even further when we aim to ‘include the oppressed’?
44111 Perhaps Gerry’s story demonstrates human character, resilience and
Doing 91

1111 determination that exist with or without the researcher. In this sense the
2 life story is a testimony to a prior resilience and emancipation. Finally,
3 Gerry’s criticality hopefully shines through the narrative: here is a critical,
4 reflexive, maybe articulate voice. While Gerry acts outside of the story,
5 the story emancipates him as storyteller and critical visionary.
Reflecting on the writing of Colleen’s story – Rebecca
9 A key concern for qualitative research and feminist work in particular is
1011 how to maintain voice while simultaneously recognising the impact of the
1 researcher. Larson (1997) notes that narrative knowing is complex because
2 we need to interrogate our own deeply held assumptions about research
3111 and the ways in which we conceptualise individuals theoretically. Colleen
4 is for me a story of a feminist life (my interpretation) although I am not
5 sure Colleen would label herself as feminist. Her story was constructed
6 with a feminist (who would label herself as such) and this means that the
7 story’s frame and its development may well have been steered towards a
8 feminist slant. Our prior relationship also gives Colleen some knowledge
9 about my feminist beliefs. However, as Larson (1997) shows in her work,
20111 even feminist enquirers and collaborators need not share common assump-
1 tions about the methodology and methods of personal narrative enquiry.
2 The shared political standpoint of feminism is a broad umbrella which
3 allows for a multiplicity of meanings. The story is a coming-out story in
4 many senses. Overtly, it can be read as sexual ‘coming out’ but this is
5 no tale of passing or making do, constrained by dominant heterosexual
6 discourse. The coming out also refers to the growing confidence and real-
7 isation both of Colleen’s potential and of ways in which agency is
8 constrained by structure. The voice of the story-giver, the narrator, is a
9 powerful one and is maintained throughout the text as ‘I’. Colleen pos-
30111 itions herself as relational throughout the text and peppers the tale with
1 the voices of specific others (e.g. family members) and a generalised other,
2 symbolising dominant societal beliefs (e.g. being ‘left on the shelf’). The
3 dialogue we had throughout the process ensured that my feminist lens
4 did not become all-pervasive. Borland’s (1991) work demonstrates the
5 ways in which stories can be disowned or distanced if researchers’ lenses
6 are not shared by their participants. The researched (a 70-year-old woman)
7 disputes the interpretation of the story and disowns it:
9 Your interpretation of the story as a female struggle for autonomy
40111 within a hostile male environment is entirely YOUR interpretation.
1 You’ve read into the story what you wished to – what pleases you
2 . . . The story is no longer my story at all.
3 (Borland, 1991, p. 70)


Table 6.3 Engaging with Frank

Of substantive The literal The construction The derivation

issues . . .

The father My father is there; he is dirty from I have put together here a series of This – I think – comes from a
work; in a rage he seizes me – this ‘hunches’ about the father in relation multiple and complex memory
is the word I always use – he seizes to his sons, alongside other hunches of boyhood; it reflects my own
me and all of one action pulls my as to why the father takes out his indignity at the hands of my
pyjama trousers to the ground / has sexual frustration on the boys. father and the perpetual feeling
his belt off from his waist / pushes of indignity.
me face down onto the table / lashes
my bottom with his leather belt.

Religion I was bound by so many rules; it This has nothing to do with faith. The roots of this are in
seemed it was all rules. There were I think I understand ‘faith’ – what childhood experiences of
the rules of my damaged family, makes things difficult in ‘Frank’s’ organised religion (my own
which of course were not so visible; heritage is ‘religion’ – and, more and those borrowed from
the rules of the neighbours which my importantly, denomination. others) that oppress and
mother feared and whispered about; Methodism (with the capital ‘M’ of confine. They are experiences
the rules of the fucking methodist the time) was at the root of ‘Frank’s’ where the ‘organisation’ and
church, and of school. father’s readjustment. ‘routinisation’ of religion are
divorced from any experience
of faith, or Christian love, or
forgiving communion.


Table 6.3 continued

Of substantive The literal The construction The derivation

issues . . .

Sexuality When he told me a few years ago What is being built here, through a In suggesting that The desert
that he was a nudist, what he said series of entries, is a story in the love left no mark, I’m suggesting
was: ‘I’ve a private yard here at the story. The reader will find the various that this man (I can hardly bear
back I can strip off in summer’ and threads which point to male–male to use that word and think of
later: ‘o yes we used to strip off in sexual experiences (it would not have him) remained unchanged
the desert’ and ‘I spent the best part been called ‘gay’ then); and the shame because of the desert
of four years bollock-naked in the that the fact that they happened is nakedness – his male
desert’ shot through his subsequent life – encounters which might have
with his wife and his boys – when happened.
he returns.

Roots St. Annes-on-sea is nowhere to live The entries about the ‘roots’ are This all works around the
a life. A man should rage and be mainly the reporting of facts – along words in the last entry here,
foul there; a man should spoil it and with ‘Frank’s’ thoughts about ‘going But he laid waste around him;
foul it. It has no future and no past. back’ and Frank’s seeking a reason already cut off, he cut off and
for the misplaced family. cut off. The entries about
family and roots are edited
such that they eventually
explain that everything he did
was effectively ‘cutting-off’.
94 Doing

1111 The story-giver, Colleen, emerges from this story as a reflexive and criti-
2 cal narrator. She asserts that experience and age are important but allows
3 genuine pride and emotion to be expressed (‘I am happy now’). By engaging
4 in dialogue with one narrator, we are allowed to make sense of a personal
5 trajectory in detail. This rich journey is made possible by our engagement
6 both with the minutiae of Colleen’s life (e.g. her dad’s car) and by the
7 wider regulatory practices which may have engulfed her (the beliefs about
8 sex and childbearing). Finally, the woman’s voice is central throughout
9 and her critical reading of her past allows us to be both critical of and
1011 delighted by a life full of change and transformation.
Reflections on the writing of David Hope – Michele
4 In this story, multiple confusions and controversies are unresolved. It
5 would be misleading to see the research process as credible in terms of
6 its engagement with the requirements for participatory research. The people
7 whom the story is about had minimal input into its production and no
8 input into its writing. Indeed if their participation in the writing of the
9 story had been maximised then the story may well have been suppressed.
20111 Perhaps it should have been. Wherever participation of the key players
1 identified conflicting interests I subordinated these to my own grandiose
2 sense of the ‘wider interests of disabled people and their families’. To
3 some extent this is part and parcel of working with a theory-driven
4 approach. Yet it also exposes a level of researcher arrogance that makes
5 for uncomfortable reflection on both the research process and its outcomes.
6 Elsewhere in my writing I have advocated ‘a reflexive, self-analytical critical
7 approach to disability research firmly grounded in human rights prin-
8 ciples’ (Moore et al., 1998, p. 97) which I do see as underpinning the
9 work with David, but clearly there is a long way to go in the demanding
30111 pursuit of critical, rights-based emancipatory life story research. Mistakes
1 notwithstanding, I think I did the poor best that could be done in the
2 circumstances to optimise participation, but still feel ill at ease with this.
3 Clearly there is no room for complacency.
4 The question of whether research engagement with a person’s story is ever
5 justifiable if the act of engagement may itself generate life-threatening conse-
6 quences can be unexpectedly much nearer to the surface than the researcher
7 expects (see also Clough, 2002, p. 58). Moreover, engagement with any
8 sensitive story profoundly affects the researcher as well as the researched
9 and there has to be a refusal to collude in the maintenance of silence around
40111 the levels of pain and risk involved in life story research. These considera-
1 tions remind us of the potency of stories but also suggest possibilities for
2 the contestation of storytelling methodologies and practices.
3 The most vital point of reflection concerns the question of whether the
44111 telling of David’s story affects positive social change. Was this research
Doing 95

1111 worth doing? Is David’s story worth telling? Will telling it make a differ-
2 ence that improves outcomes for men with spinal cord injury and their
3 families? Will telling David’s story progress understanding of the politics
4 of disablement or, conversely, recycle negative images of disabled people
5 and their lives and thus have oppressive consequences? If we genuinely
6 seek to transform understanding of disability through life story research
7 then it is important to open up these debates.
Reflections on the writing of Frank – Peter
1 In Frank the architecture of the story explores the archaeology of both
2 the use of the fictional narrative turn to ‘tell’ a persuasive story, and the
3111 archaeology (or perhaps ‘fossils’) of a life. Without doubt this story is
4 made and used to explore occupations of my own – with the mystery of
5 fatherhood, with my roots, with questions of belief and religious institu-
6 tions, and of sex and sexuality. Lurking somewhere is a largely implicit
7 connection between Frank’s troubled childhood and his choice of profes-
8 sional location, working with disturbed boys. I say ‘choice’ here, though
9 I don’t think it’s quite that, and is perhaps better understood by a subtle
20111 teleology which offers the reader an open-ended reflection on the connec-
1 tion. In this respect, the story avoids the determinism which characterises
2 both the ‘classical’ life history and the (equally classical) psychoanalytic
3 case study. I was aware of doing this in earlier attempts to make patent
4 the latent (Clough, 1995, 1998, 2002; Clough and Corbett, 2000). Frank
5 is not didactic; it is, if anything eristic.
6 Frank is a fantasy. It may not be a particularly good example of it, but one
7 of its formal ancestors is the classic Victorian novel – it is moral, realistic and
8 bourgeois and – above all – the author owns it (or so I say). However, since
9 it appears some hundred or so years later than its forebear, and what’s more
30111 masquerades as social science in a postmodern age, it needs some apology.
1 ‘What a strange claim!’ you say; no self-respecting (and how they did!)
2 Victorian would want anything to do with the tub of guts which is assem-
3 bled in the name of art as Frank. Surely your literary history is mistaken, and
4 you’re thinking of Virginia Woolf, or certainly James Joyce (who certainly
5 knew about unseemly stains)? Wrong, I say.
7 The characters in my novels are my own unrealised possibilities. That
8 is why I am equally fond of them all and equally horrified by them.
9 Each one has crossed a border that I myself have circumvented. It is
40111 that crossed border (the border beyond which my own ‘I’ ends) which
1 attracts me most. For beyond that border begins the secret the
2 novel asks about. The novel is not the author’s confession; it is an
3 investigation of human life in the trap the world has become.
44111 (Kundera, 1984, pp. 65–66)
96 Doing

1111 The design and achievement of Frank springs out of resentment of the
2 deluded, unwakened reader who believes in something called proof which
3 will not disturb his epistemological slumbers.
Conclusions and further questions
7 Reading through this chapter, we are reminded of the popularised defini-
8 tion of the intellectual: ‘somebody who finds an inordinate amount of
9 questions, and little or no answers’. A forage into the use of methods in
1011 researching life stories opens up a whole host of debates connected with
1 power, authenticity, ethics, stance, subjectivity and applications. We will
2 return to some of these debates in Part 4 of the book, but for now we feel
3 there are three key questions to keep in mind. First, what exactly
4 is an authentic life story? Is it one that reflects in/directly the input and own-
5 ership (as with Colleen’s story) – hence individual authenticity? Or should
6 authenticity be measured in terms of the extent to which it meaningfully
7 captures some of the artefacts of a culture inhabited by a narrator (as,
8 arguably, with Gerry O’Toole’s story)? Second, our consideration of
9 method has demonstrated, we hope, the close connections of methodology
20111 and method. Often, the latter is presented in key under/postgraduate
1 textbooks as a toolkit to be taken from to answer a particular question.
2 However, this chapter has highlighted the ways in which a life story
3 researcher’s use of method and consideration of a phase of research are
4 directly influenced by the methodological persuasion that they adopt. In this
5 case, it may make more sense to talk of method/ology rather than methodo-
6 logy and method. Finally, methods are never used by researchers within a
7 theoretical vacuum. Life story researchers approach their narratives and
8 their narrators with key assumptions in mind. We hope that this chapter
9 has at least implicitly demonstrated some of the ways in which authors’
30111 preoccupations have advanced particular visions of research. In the
1 next chapter, we turn to an explicit consideration of the link between
2 method/ology and epistemology.
Chapter 7
Epistemology in life story research
5 The aim of this chapter is to revisit deeper concerns introduced in
6 Chapters 5 and 6 and to consider how our theoretical frameworks came
7 to impact upon the stories that we have written. Broadly speaking, this
8 involves each of the four authors considering how their particular take
9 on knowledge – their epistemological view – has influenced their writing
20111 of their narrative. We aim to unearth the often buried assumptions of life
1 story researchers: to lay them bare on the grounds of method/ology and
2 to consider how epistemology shapes method/ological terrains. Bannister
3 et al. (1993) argue that qualitative research is part of an ongoing debate.
4 Crucial to this debate is the role of epistemology in relation to the doing
5 of qualitative research. Each of the authors of the life stories presented
6 in Part 1 of this book came to their storytelling with particular epistemo-
7 logical baggage. Epistemology can be viewed as the grounds or structures
8 on which we build up theories. In its crudest sense, epistemology is a
9 philosophical orientation – which directs us to see the world in partic-
30111 ular ways, and then make sense of what we see through the use of related
1 theories. Following Goodley et al. (2002) and Clough and Nutbrown
2 (2002), life story research is often viewed as having the following episte-
3 mological orgins:
5 • idiographic not nomothetic – interested in the private, individual and
6 subjective nature of life rather than the public, general, objective;
7 • hermeneutic not positivist – preoccupied with capturing the meanings
8 of a culture/person rather than measuring the observable aspects of
9 a culture/person;
40111 • qualitative not quantitative – focused on the wordy nature of the
1 world rather than its numerical representation;
2 • specificity not generalisation – amenable to the specific description
3 and explanation of a few people rather than the representative gener-
44111 alities of a wider population;
98 Informing

1111 • authenticity not validity – engaged with the authentic meanings of a

2 story and its narrator rather than devising measures that measure
3 what they purport to measure;
4 • language as creative not descriptive – recognises the constructive effects
5 of language rather than language as a transparent medium for
6 describing the world.
8 While life story research can be seen as a post-positivistic approach to
9 research that eschews long-held traditions of positivistic approaches to
1011 social science, the epistemological leanings of life story researchers often
1 bring with them a host of other, more specific considerations.
Poststructuralist approaches to life story research
– Dan Goodley
6 Gerry O’Toole’s story was created by the author through the employment
7 of an ethnographic approach. An ethnographer’s theoretical position will
8 noticeably influence the ways in which they choose their methods, deal
9 with their material and later conceptualise their analyses. Indeed, acknow-
20111 ledging theoretical agendas and frameworks is a key part of ethnography’s
1 engagement with the generation/construction of meaning. Gordon et al.
2 (2001) identify a number of epistemological persuasions, each generating
3 particular theoretical accounts. They note that the postmodern turn in the
4 social sciences has had a major impact upon the ethnographic approach.
5 In this section, we will consider the ways in which Gerry O’Toole’s story
6 was the product of an engagement with a postmodern method: that of
7 poststructuralism.
Postmodernism and narrative
1 Postmodernism is a subject ripe for social scientific debate. It continues
2 to receive passionate support and scathing criticism. For some, the notion
3 of a postmodern world smacks of defeatism: giving up the modernist
4 agenda of progression, seeking truth and associated emancipation, most
5 notably embodied in scientific progression (Assiter, 1996). For others,
6 recognising postmodernism is itself part of a radical political and philo-
7 sophical agenda: challenging a host of ‘grand narratives’ that serve the
8 needs, actions and demands of omnipotent social groups. Moreover, post-
9 modernity is used as a term to describe the twenty-first century’s move
40111 towards late capitalism, post-Fordism and the knowledge society. Lyotard’s
1 (1979) The Postmodern Condition provides one useful inroad into the
2 phenomenon. He suggests that postmodernism involves incredulity towards
3 metanarratives or grand narratives. Modernist societies are – or were –
44111 typified by the promotion of grand narratives. These have three specific
Informing 99

1111 features. First, they aim to be overarching and all-encompassing. Scientific

2 narratives on ‘learning difficulties’ are posited in ways that purportedly
3 can be imported into studies and practices that aim to make sense of,
4 and treat, people so labelled. Second, these grand narratives boast foun-
5 dationalism; they desire to base knowledge on claims that are ‘known’
6 with certainty. Scientific knowledge about ‘learning difficulties’ utilises
7 concepts and claims such as ‘objectivity’ and ‘scientific method’ which
8 seemingly have a given certainty to them (not least through the use of
9 intelligence and psychometric testing). Third, they have an optimistic faith
1011 in progression. The ‘truths’ of these grand narratives are implicitly held
1 to be part of the modernist agenda of progression, which for people with
2 learning difficulties is often associated with their ‘cure’, ‘rehabilitation’
3111 and ‘care’.
4 For Lyotard, these elements of grand narratives are increasingly open
5 to question. Indeed, by using the term ‘grand narrative’ instead of ‘truths’,
6 we are encouraged to question the very status and function of these narra-
7 tives and, accordingly, to offer alternative narratives. Following Assiter
8 (1996, p. 17), how can we still unquestioningly hold up the foundation-
9 alist, all-encompassing and progressive qualities of grand narratives –
20111 enlightenment projects such as science – that foundered on the rock of
1 tragedy that was Auschwitz? Grand narratives are not and never were
2 benevolent offerings for all. They served a variety of institutional inter-
3 ests, were located in a host of performative acts and led to constructions
4 of many members of the human race as the ‘objects’ of knowledge to
5 be assessed, measured, treated and in some cases wiped out. In its most
6 radical anti-foundationalist moments, postmodernism escapes these
7 modernist horrors to leave us with a collection of alternative, and possibly
8 more empowering, narratives.
Poststructuralism and narrative
2 In terms of turning to more empowering narratives, one possible route is
3 offered by what may be termed poststructuralism: the discourse or methods
4 of postmodernity offered by writers such as Judith Butler (1990, 1993),
5 Michel Foucault (1973a, 1973b, 1977, 1980, 1983), Jacques Derrida and
6 Jacques Lacan (see Stronach and McLure, 1998). Poststructuralists inter-
7 rogate the workings of knowledge and grand narratives in a number of
8 ways. First, grand narratives reflect the manipulative powers of ‘discourses’.
9 Entities such as ‘learning difficulties’, ‘abnormal’, ‘criminal’, ‘insane’ are
40111 created within and by institutions of society through words and actions
1 – discourses – which serve particular societal and institutional functions.
2 They should, therefore, be viewed with scepticism rather than as truth.
3 Second, the universalising theories of grand narratives are rejected.
44111 Poststructuralist analyses have shown that ‘universals’ or ‘truths’ actually
100 Informing

1111 marginalise certain groupings to the status of ‘other’, such as women,

2 black, gay, mentally ill, working-class and disabled people. Grand narra-
3 tives are clearly not universal when so many groupings are afforded a
4 deficient, lacking and other position. Knowledge and power are inter-
5 twined. Third, poststructuralists are suspicious of modernist values of
6 justice or freedom since they have their roots in oppressive discourses –
7 where some groupings benefit from these values and others are ignored.
8 Consequently, the disciplines/disciples of scientific progress are viewed
9 with cynicism, including psychiatry, psychology, sociology, social policy,
1011 politics, medicine, and so on. Fourth, the raison d’être of modernist
1 knowledge – understanding human beings – is problematised. Following
2 Foucault, there is a price to be paid in understanding – or more accu-
3 rately, constructing – the human subject. Hence, the liberal notion of the
4 embodied, agentic, humanist human subject is deconstructed. Attention is
5 paid to the very ways in which this view of human beings is itself a reflec-
6 tion of dominant discourses of modernity (Butler, 1990). Instead,
7 poststructuralists highlight how ‘subjects’ are fragmented, decentred and
8 multiple. Following Foucault, Assiter argues that the individual self is a
9 fiction, an historically contingent construct:
1 The individual is not a pregiven entity which is seized on by the
2 exercise of power. The individual, with his identity and characteris-
3 tics, is the product of the relation of power exercised over bodies [my
4 italics].
5 (Assiter, 1996, p. 9)
7 This radical rewriting of the human subject calls into question how we
8 view ourselves and others. Poststructuralism suggests that our selves are
9 constructed via a host of discourses and grand narratives. The individual
30111 human being, or human subject, is not a biological or natural given. A
1 human subject and associated sense of self is created through power and
2 knowledge. Selves and individuals, the available objects that are used to
3 talk of (and therefore constitute) the self, emerge from the discourses of
4 a culture in which they are created.
5 For some individuals, their selves are particularly open to constitution
6 by ‘expert’ bodies of knowledge. Hence the selves of people with ‘learning
7 difficulties’ are often constructed through reference to discourses and
8 objects of human services such as ‘lacking intelligence’, ‘behavioural incom-
9 petence’, ‘maladaptive functioning’ and ‘immature development’ (Ryan
40111 and Thomas, 1980/1987). Within the grand narrative of ‘science’ there is
1 a tendency to view these objects as part of the embodied unitary human
2 subject: they make up the selves of people with learning difficulties. For
3 poststructuralists, these very objects are the stuff of a grand narrative that
44111 requires dismantling.
Informing 101

1111 Poststructuralist storytelling

2 Poststructuralist storytelling aims to excavate the power and knowledge
3 that are used to construct versions of humanity. This contributes to social
4 constructionist critiques in the social sciences (see Burman and Parker,
5 1993; Burr, 1995). Klages (2001) argues that a key aim of poststruc-
6 turalist feminist theorists is the study of how gender is created and/or
7 destabilised within the structure of language itself. Similar things could
8 be said about Gerry O’Toole’s story. A key concern emerging from the
9 ethnographic research, and discussed in Chapters 5 and 6, was the way
1011 in which people with learning difficulties’ ‘handicaps’ appeared to be less
1 the consequence of their ‘impairments’ and more the product of disabling
2 experiences. In this sense, Foucault’s consideration of the discursive
3111 construction of deviance and abnormality resonates with the ethnographic
4 experiences collected from the life worlds of people with learning diffi-
5 culties. The subjectivities of many of Gerry’s peers were often locked into
6 the meanings that were afforded them in institutionalised and segregated
7 settings. The aim of the life story was to capture the socially constructed
8 nature of these experiences, the language of the wider culture and their
9 accompanying subjectivities:
1 Language is the place where actual and possible forms of social organ-
2 isation and their likely social and political consequences are defined
3 and contested. Yet it is also the place where our sense of ourselves,
4 our subjectivity, is constructed . . . Subjectivity is produced in a whole
5 range of discursive practices – economic, social, and political – the
6 meanings of which are a constant site of struggle over power.
7 (Weedon, 1987, p. 21)
9 This sense of struggle over power, subjectivity and knowledge can be
30111 viewed in the life story. A strong narrative thread is that of Gerry resisting
1 (or perhaps escaping) many encounters with oppressive discourses, in
2 contrast to the vignettes of others. A sense of discursive oppression and
3 resistance runs throughout the narrative.
4 Furthermore, Derrida’s method of deconstruction enters Gerry’s story.
5 Eagleton (1983) and Hedges (2000) provide a useful overview of this post-
6 structuralist method. Deconstruction aims to demonstrate how something
7 represented as completely different from something else exists only by
8 virtue of defining itself against that something else. Therefore, the alien-
9 ation experienced by some people with learning difficulties can be
40111 understood only when the opposite of their experiences are demonstrated:
1 being disabled exists only in relation to not being disabled. Hence, David
2 (who enters Gerry’s story) is viewed as abnormal only when his socks are
3 removed to show his 12 toes, which are so different from his abusers’
44111 10 toes. And Gerry’s ambition and achievements as an ‘ordinary’ chap
102 Informing

1111 take on resonance only when the ‘extraordinary’ experiences of disabled

2 others are accounted for. There are a number of contrasting stories that
3 demonstrate the potentially fluid and mutable nature of living with
4 the label of learning difficulties: the story (hopefully) destabilises the
5 naturalised notion of ‘learning difficulties’.
6 In terms of ownership, postmodernism problematises traditional ethno-
7 graphic visions of the ideal ‘objective’ ethnographer’s account; it attaches
8 significance to the narratives of ‘human subjects’ whose voices may have
9 been ignored or spoken of by grand narratives. Malinowski’s maxim of
1011 capturing the ‘native’s vision of their world’ is directly contravened by
1 postmodern demands for researchers to openly and critically write them-
2 selves into their ethnographic accounts. If we accept the presumption that
3 life is only a collection of narratives, then researchers need to own their
4 narratives of a given part of the social world. The turn to the text has
5 led to the death of the subject. The reflexive, embodied, agentic human
6 being is replaced by an attention to the ways in which (human) subjects
7 and (social, cultural) objects are constructed through a variety of
8 interrelating stories and practices: or discourses.
Gerry O’Toole: a postmodern subject
2 Gerry’s story is a research(er)’s ethnographic story that develops a discourse
3 about a given culture and characters of a discursive tale. Gerry is a subject
4 in a postmodern tale of disability discourses. The term ‘fiction’ can be
5 applied in the poststructuralist sense: to fictionalise a host of practices
6 that are often seen as inevitable and ‘the right’ practices for disabled
7 people. Via the narratives collected during ethnography, the resultant story
8 aims to destabilise common-sense understandings of disability and impair-
9 ment; to challenge ‘truths’ that occupy and dominate the lives of some
30111 people with learning difficulties; to blur the words of writer and char-
1 acter and to illuminate how ‘abnormalities’ such as ‘learning difficulties’
2 exist only in relation to opposite conceptions of ‘normality’.
Feminist standpoint approach to life story
research – Rebecca Lawthom
7 The first thing to recognise is that there is a plurality of feminisms (Mama,
8 1995). We use the term ‘women’ to refer to a diverse collective of females,
9 differentiated by ‘race’, class, age, disability and sexuality. Feminisms,
40111 whilst still other to dominant discourses, need to retain a collective iden-
1 tity in order to work together to transform dominant power relations in
2 society (Yuval-Davis, 1993). Feminist standpoint epistemologies in research
3 emphasise the perspectives of those whose lives are shaped and constrained
44111 (or marginalised) by the dominant social order. Ussher (1997) notes that
Informing 103

1111 a central concern for feminist psychology today is to theorise and explore
2 the ways in which women’s experience is gendered, both through the
3 material conditions and the symbolic discursive processes of social life.
Feminist narratives
7 Certain narratives emerge from feminists themselves that shed light on the
8 gendered nature of, for example, academic life (Ramazonoglu, 1987; Kagan
9 and Lewis, 1989; Lawthom, 1997). Alternatively, narratives are often used
1011 by women with women. A good example of the ways in which feminists
1 use narratives with women is demonstrated in a bicultural study (within
2 Aotearoa/New Zealand). Here, women’s experiences of recovery from
3111 disabling mental health problems are cast as stories of recovery. The stories
4 show both their agency and struggle within mental health care provision:
6 Their texts of illness are social texts, gendered and raced, and so are
7 their recovery texts, yet the latter drew on the more empowering
8 cultural resources available to them as women and men, Maori and
9 non-Maori, rather than disempowering stereoptyes which had once
20111 defined them more fully.
1 (Lapsley, Nikora and Black, 2000, p. 422)
3 Hunt (1998) similarly has used storytelling with women to generate
4 critical thinking about mental health and emotional health care. Indeed,
5 stories, as rich valuable data, are key to understanding womens’ experi-
6 ences. Mauthner’s work with women who are diagnosed as postnatally
7 depressed, uses a voice-relational methodology and subsequently presents
8 the accounts as post-natal tales (Mauthner, 2002). Zhang’s (1999) work
9 with women in China emerged from her own experience of termination
30111 in a country with a one-child policy. She found in women’s stories a clear
1 relationship between pregnancy, abortion and the one-child policy.
2 Concern about health, job absence and ‘face’ (important in Chinese society)
3 impacted upon women’s menstrual cycles. Zhang’s research not only had
4 emancipatory policy-making implications regarding contraception and
5 counselling but led her into feminist theory and academia. The relation-
6 ship between women and words has not always been an easy one. Women’s
7 ways of knowing as celebrated (e.g. Belenky et al., 1986) are not always
8 viewed as privileged accounts of experience (even within the feminist
9 community). Though there may not be agreement between diverse repre-
40111 sentations of feminism (separatist, liberal, Marxist, etc.), there is common
1 agreement over women’s relative standing in relation to gendered power
2 (taking into account ‘race’, class, sexuality, ability). Diversity across
3 method/ologies seems an important feature of accessing and telling stories
44111 which may, otherwise, remain untold.
104 Informing

1111 One of the crucial impacts of feminist epistemology on research has

2 been the paradigm-shifting analyses of ‘malestream’ method/ology. The
3 arguments of Salmon (2003) are symptomatic of feminist critiques of
4 research in the social sciences. Salmon (2003) argues that methodologism
5 is a limited epistemology. It is a forlorn belief that quality can be guar-
6 anteed simply by following procedures. Following Feyerabend (1975,
7 1978), justification for the value of scientific methods cannot logically
8 emerge from the methods themselves. Investigators should be explicit about
9 the epistemological basis, but two problems emerge:
1 1. epistemologies describe the use to which methods can be put, not
2 which methods should be used;
3 2. post-hoc retrospective epistemologism.
5 Feyerabend’s view is that the anarchist scientist is playful rather than
6 precious with method/ology. This provides an epistemological rationale
7 for recently emerging views in social science that ‘good’ research is play-
8 ful; that research which slavishly follows methodological rules stultifies
9 research; and that real scientific progress results from imagination,
20111 creativity and common sense, rather than merely deduction and induction
1 (Rennie, 2000; Robinson, 2000). These arguments, taken from a feminist
2 perspective, are reminiscent of Oakley’s (1981) classic paper which argues
3 for relationality over methodologism in terms of working with women,
4 instead of on them. Though this paper has been critiqued for inadequate
5 consideration of representation issues (e.g. white academic feminists repre-
6 senting black women’s experience), the issue of relational engagement still
7 seems important to feminist emancipatory research.
Colleen – a feminist tale?
1 Colleen’s narrative is fundamentally a feminist tale. In form, it gives voices
2 to one woman and her story; in process, the research was undertaken in
3 an emancipatory framework; and in context, the story tells of a woman’s
4 realisation that patriarchy is present, both at a macro and personal level.
5 What makes this tale feminist is not the realisation of the patriarchal divi-
6 dend – men hold power in exchange for domestic capabilities – but that
7 Colleen survives this, and is cognisant of the need for a way of under-
8 standing that could be called feminist:
40111 Whether this will ever change, whether ever anyone will ever think
1 it is a really wonderful job that women do, I don’t know.
3 Colleen’s feminist tale might not fit into a unitary vision of what femi-
44111 nism is. McNay has argued for a relational idea of identity, which
Informing 105

1111 encourages us to think of difference in terms of its construction through

2 the social realm . . . a theory of identity as relational, and therefore
3 open-ended, provides the basis for a theory of resistance based on a
4 politics of difference.
5 (McNay, 1992, p. 110)
7 As feminists, we may share diverse priorities while accepting, in practice,
8 a set of ‘relational ethics’.
A social model of disability approach to life story
research – Michele Moore
3111 The extent to which a particular theoretical framework impacted on the
4 story about David and of how a particular epistemological stance led to
5 the writing of a particular kind of narrative is plain for all to see. I have
6 not tried to disguise the power of the social model of disability in the fram-
7 ing of the story or to gloss over its associations with emancipatory research
8 practice. The social model of disability – the British Disability Movement’s
9 ‘big idea’ – shifts attention away from the ‘disabling consequences of
20111 impairment’ to the disabling consequences of society’s exclusion of people
1 with impairments (Oliver, 1996). Emancipatory research practice aims to
2 genuinely involve disabled people in research and meaningfully capture
3 their understandings of themselves and the disabling world (Zarb, 1992).
4 Both of these dimensions of the research agenda were influential in shap-
5 ing the thinking and processes which led up to the writing of the story.
6 Barnes (2003, p. 14) explains that ‘when directly linked to disabled peo-
7 ple’s ongoing struggle for change, doing emancipatory disability research
8 can have a meaningful impact on their empowerment and the policies that
9 affect their lives’, and this is the position to which I was committed at the
30111 time. Yet the circumstances were such that an emancipatory research
1 agenda could not be pursued with any faithful reference to the essential
2 criteria of that approach – processes of consultation were, for example,
3 wholly inadequate and arguably the project is not recognisable as emanci-
4 patory research practice because its commitments are frequently muddled.
5 The processes of the project might not best be described as having a ‘mean-
6 ingful impact’ on David’s empowerment or on the policies that affected his
7 life and the lives of his peers. But the driving theoretical and associated
8 methodological principles were unshakeable, hence explicit acknowledge-
9 ment of the ways in which these bias the life story project is imperative.
40111 While one of the chief purposes of research is to support the genera-
1 tion of theory, it is also true to say that in life story research, as soon as
2 you have identified the life you are interested in, your project is bound
3 up with your theoretical predispositions, and is subordinated to your
44111 personal theoretical inclinations. Questions of whose life you research and
106 Informing

1111 why you are subjecting that life to research throw the matter of theoret-
2 ical neutrality into dispute. When methodological and analytic choices are
3 then also mapped onto the process of researching and writing a life story,
4 both the focal life and the ensuing story are necessarily transformed. In
5 the field of disability research there is a requirement for the transformative
6 power of combining theoretical preferences and methodological processes
7 to be maximised in the project of emancipation; hence it emerges that it
8 is not possible or productive to separate theoretical persuasion from
9 the narrative. The narrative should be underpinned unequivocally by the
1011 aim of empowerment; and the aim of empowerment is fundamentally
1 underpinned by the social model of disability.
2 All of this raises familiar debate about ‘objectivity versus subjectivity’
3 in research and exposes a large part of the methodological struggle which
4 all life story researchers face. Even before I met David my partisan position
5 was fixed. I had formulated questions out of a deep professional engage-
6 ment with the experiences of disabled people and out of personal
7 knowledge of his family situation. For example, I was interested in finding
8 out about his experiences of living in his parents’ house because in an
9 earlier study of experiences of spinal cord injury I had witnessed immense
20111 difficulty in mixed-generation families obliged to negotiate boundaries of
1 independent living within one household (Oliver et al., 1988). I wanted
2 to know about his perceptions of medical and social services because I
3 had repeatedly observed failures of service providers to confront the
4 conceptual inadequacies of community care policies and services shaped
5 without reference to the social model of disability (see also Priestley, 1999).
6 My personal experience was material to the shaping of the story: ‘I think
7 I made up my mind what was wrong with David’s life before I was even
8 out of the car . . . I knew him to be about my own age . . . I was saying
9 to myself . . . I’d be wanting to commit suicide too’.
30111 The life story research that I do explicitly seeks to optimise the rela-
1 tionship between life stories, an agenda for empowerment and inclusion
2 and the everyday contexts in which exclusions of people with impairments
3 are played out. I have said elsewhere that my work is ‘fundamentally anti-
4 thetical to the possibility of objectivity in respect of this commitment’
5 (Armstrong and Moore, 2004). Of course we all have many vested inter-
6 ests, and this is why ideally life story researchers should, in my view,
7 place emphasis on consultation with insiders to check the elaboration of
8 our theoretical discourses and to offer alternative perspectives and guid-
9 ance. In the context of my story of David, however, these aspirations are
40111 hugely compromised. His experiences of life and culture were very far
1 from my own. Recognising David as the expert on himself and his expe-
2 rience means that a construction of a story about him and his experiences
3 which has been constructed without him obviously runs counter to a focus
44111 on disabled people’s own starting points.
Informing 107

1111 Critics will always be able to dispute whether I have presented the ‘real
2 story’, but arguably this does not actually matter. For me, the hallmark of
3 life story research is that it should prompt positive social change : ‘it can
4 be partial, it can be disturbing, it can raise more questions than it answers,
5 it can be contingent, provisional, ideological even, but it must advance an
6 agenda for inclusion that is – as far as possible – prioritised by those at risk
7 of exclusion, and it must be centrally informed by those who live with the
8 reality of exclusion’ (Armstrong and Moore, 2004).
9 A focus on points of disagreement about the purposes of life story
1011 research concentrates attention on the experiences of disabled people and
1 can throw up glimpses of alternative theoretical positions that could be
2 adopted. It is invariably helpful to think about the issues you are in danger
3111 of neglecting if you view the world in a particular way. Sticking firmly
4 with the social model of disability as a tool to guide research processes
5 and analyses will undoubtedly lead to the discounting of other theoret-
6 ical perspectives and there is a danger that the life story is being hijacked
7 through research as a means of imposing change. In this sense, life story
8 research can be seen as an arena in which struggles take place over values,
9 applications and change. Our own habits and patterns of thinking and
20111 behaving as life story researchers need to be examined all the time.
1 So, in conclusion, the story about David is entirely prejudiced by a
2 particular theoretical and epistemological stance, which has led to its con-
3 struction in a particular way. My emphasis has been on demonstrating how
4 a social theory of disability can be intrinsically tied to life story research
5 methodology and to claim that this fixture is an essential feature of life story
6 research that seeks to advance the project of inclusion. Arguably it is vital
7 that life story researchers make no attempt to tidy their theoretical baggage
8 out of their writing. We cannot erase our personal commitments from life
9 story research, nor can we feign objectivity. Nevertheless we can offer
30111 life story research as offering a way in to different ways of ‘making the
1 familiar strange’ and contesting normative assumptions.
A literary theory approach to life story research –
Peter Clough
6 This section sketches out the contribution of literary theory to the devel-
7 opment of life story research in social science. Robert Scholes argues that
8 narrative is ‘a place where sequence and language, among other things,
9 intersect to form a discursive code’ (Scholes, 1974, p. 200). He puts
40111 forward the idea of ‘iconic and indexical dimensions of language’. For
1 ‘narrative is not just a sequencing, or the illusion of a sequence . . .; narra-
2 tive is a sequencing of something for somebody’ (ibid., p. 205). For Scholes,
3 real events happen, and they happen elsewhere – apart from the narrative.
44111 Such ‘real’ events can then be symbolised by narrative.
108 Informing

1111 A narration is the symbolic presentation of a sequence of events

2 connected by subject matter and related by time. Without temporal
3 relation we have only a list. Without continuity of subject matter we
4 have another kind of list.
5 (Scholes, 1974, p. 205)
7 There is work for the reader/audience too, for ‘the difference between
8 drama and narrative is not that characters speak in drama but that we
9 hear them; not that they have bodies but that we see them. Drama is
1011 presence in time and space; narrative is past, always past’ (ibid., p. 206).
1 So narrative is about ‘selection’ for ‘telling’ and the selection and presen-
2 tation of these events must connect, have contiguity, with the subject
3 matter so that their occupation of space is significant. As Scholes continues:
5 When the telling provides this kind of sequence with a certain kind
6 of shape and a certain level of human interest, we are in the pres-
7 ence not merely of narrative but of story. A story is a narrative
8 with a certain very specific syntactic shape (beginning–middle–end or
9 situation–transformation–situation) and with a subject matter which
20111 allows for or encourages the projection of human values upon this
1 material. Virtually all stories are about human beings or humanoid
2 creatures. Those that are not invariably humanise their material though
3 metaphor and metonymy.
4 (Scholes, 1974, p. 206)
6 The portrayal of lives through life story research could be said to have
7 three elements: the telling of events, the creation of text, and the inter-
8 pretation of those events. In the case of fictional narrative in life historical
9 research, events are not only told but are also created. What is interesting
30111 – perhaps taken for granted – is the (pre)existence of events. Something
1 had to have happened to bring about the story. Scholes’s analytical frame-
2 work can be applied in the analysis of all stories:
4 Events came first, the text second, and the interpretation third, so
5 that the interpretation, by striving toward a recreation of the events,
6 in effect completes a semiotic circle. And in this process, the events
7 themselves have become humanised – saturated with meaning and
8 value – at the stage of entextualisation and again at the stage of inter-
9 pretation. Our customary distinction between historical and fictional
40111 narrative can be clarified in terms of this structure. History is a narra-
1 tive discourse with different rules than those that govern fiction. The
2 producer of a historical text affirms that the events entextualised did
3 indeed occur prior to the conceptualisation . . . It is certainly other-
44111 wise with fiction, for in fiction the events may be said to be created
Informing 109

1111 by and with the text. They have no prior temporal existence, even
2 though they are presented as if they did. As Sidney rightly pointed
3 out four centuries ago, the writer of fiction does not affirm the prior
4 existence of his events, he only pretends to through a convention
5 understood by all who share his culture.
6 (Scholes, 1974, p. 207)
8 So what are we to take from this conceptualisation? How might we use
9 it to interpret the four stories in this book and to create other stories at
1011 varying points on the ‘truth’–‘fiction’ continuum? Richardson (1994) offers
1 us some help here by pointing to the complex relationships of freedom,
2 audience, constraint and (self-)consciousness in any story.
4 Although we are freer to present our texts in a variety of forms to
5 diverse audiences, we have different constraints arising from self-
6 consciousness about claims to authorship, authority, truth, validity
7 and reliability. Self-reflexivity unmasks complex political/ideological
8 agenda hidden in our writing. Truth claims are less easily validated
9 now; desires to speak ‘for’ others are suspect. The greater freedom
20111 to experiment with textual form, however, does not guarantee a better
1 product. The opportunities for writing worthy texts – books and arti-
2 cles that are a ‘good read’ – are multiple, exciting and demanding.
3 But the work is harder. The guarantees are fewer. There is a lot more
4 for us to think about.
5 (Richardson, 1994 p. 523)
7 Doerr (2002), in his collection of short stories, seems to be working out
8 a set of personal concerns, about freedom, restriction and intrusion. His
9 style is to end his fictional stories with single poignant (often short)
30111 sentences which, arguably, are the reason for the story. His political, moral
1 or emotional message hangs at the end, and it is only at this point that
2 we know what the story, as far as its author is concerned, is about. But
3 to return, finally, to the distinction between fictional and the fictionalised.
4 Gerry O’Toole and Colleen are fictionalised accounts broadly ‘truthful’
5 and, in Colleen’s case, agreed with their informants/participants. Frank,
6 however, is fiction – agreed with no one – out of the author, no negoti-
7 ations, no vetos. ‘Frank’ (as he is portrayed in the story) has traces in
8 him of other teachers and students, in addition to the one man who came
9 to mind when I wrote Frank, but in the end ‘Frank’ is a character, not
40111 a person, and he is brought together to embody an insight of the author’s;
1 for, as Kundera has it,
3 characters are not born like people, of a woman; they are born of a
44111 situation, a sentence, a metaphor containing in a nutshell a basic
110 Informing

1111 human possibility that the author thinks no one discovered or said
2 something essential about.
3 (Kundera, 1984, pp. 65–66)
5 The ‘basic human possibility’, or the ‘something essential’, is subtle and
6 calls for evocation rather than description, for this is not a didactic text;
7 rather, the intention is to assemble a moral milieu in which – guided by
8 the craft of the author – the reader finds himself or herself. The story
9 ‘works’ to the extent that it creates such a moral space. Robbe-Grillet
1011 says of this process:
2 Fiction writing, unlike reportage, eye-witness accounts or scientific
3 descriptions, isn’t trying to give information – it constitutes reality.
4 (Robbe-Grillet, 1955, p. 89)
6 Thus, the literary approach to life story research can stand apart. It can
7 stand on its own bed of complexity of ethics and morals. Values, when
8 we consider fictional narrative in social research, are unprotected; they
9 are at the mercy of the author. So, this approach is essentially about
20111 language, using language to create events through texts which are then
1 open to the multiple interpretations of their readers. As Postman has it:
3 Both a social scientist and a novelist give unique interpretations to a
4 set of human events and support their interpretations with examples
5 in various forms. Their interpretations cannot be proved or disproved,
6 but will draw their appeal from the power of their language, the depth
7 of their explanations, the relevance of their examples, and the credi-
8 bility of their themes. And all this has, in both cases, an identifiable
9 moral purpose.
30111 (Postman, 1992, p. 154)
Reflecting on this chapter
4 Michele Moore argues earlier that ‘the story about David is entirely prej-
5 udiced by a particular theoretical and epistemological stance which has
6 led to its construction in a particular way’. This point about persuasion,
7 positionality and particularity is crucial to all qualitative research, though
8 perhaps even more so to life story research. All writers of stories are
9 driven by particular visions of the world, which lead to the types of narra-
40111 tives that unfold. It is our hope that we have exposed at least some of
1 the ways in which epistemology informs the writing of stories and the
2 vision of the social world in which those stories take place. We now move
3 from method/ology to interpretation.
Part 3
3 Making sense of
5 life stories
3111 Part 3 contains our engagement with analysis. Chapter 8 describes four
4 approaches to analysis – discourse analysis, voice relational analysis,
5 grounded theory and literary analysis – which will be used to analyse,
6 respectively, the stories in Chapters 1–4. You will note that these analyt-
7 ical approaches reflect the four distinct epistemological stances of the
8 authors described in the last chapter. Epistemology links method/ology
9 and analysis. Chapter 9 presents four analyses of the stories – each story
20111 being analysed using one analytical approach. Our aims with this chapter
1 are twofold: to analyse the stories through locating them in wider theo-
2 retical considerations and to demonstrate how analysis appears in the text
3 following a particular approach. Chapter 10 critically reflects upon
4 analysis. We pay particular attention to the impact of analysis in terms
5 of its fit with our original aims of writing life stories and its impact upon
6 the integrity of the life story.
Chapter 8
Analysis in life story research
5 This chapter begins our analytic journey of life stories. One of the authors
6 of this book has written elsewhere:
8 The meanings of a narrative arise out of the interaction of story,
9 storyteller and audience (Reason and Hawkins, 1988, p. 86). What
20111 audiences do with stories is often unclear. Consequently, an argument
1 may be made for analysis that points out to readers themes within
2 stories. Goodson (1992) suggests that analysis should increase the
3 wider benefits of narratives by opposing unsympathetic, conservative
4 or hostile readings . . . analysis strengthens stories.
5 (Goodley, 2000, p. 57)
7 In this chapter we introduce you to four approaches to analysis. You will
8 note that each analytical position fits neatly with each of the four epis-
9 temological positions articulated in the previous chapter. So, for example,
30111 a poststructuralist epistemology adopted by the writer of Gerry O’Toole’s
1 story is now taken further in terms of a poststructuralist approach to
2 analysis (discourse analysis). We would like to flag up a health warning
3 here. Often, during a research project, different concerns may mean that
4 there is no logical link between a given epistemology and a directly resul-
5 tant approach to analysis. However, we have kept with such a direct
6 relationship for reasons of continuity and to clearly demonstrate the ways
7 in which particular analytical frameworks have specific epistemological
8 priorities.
Discourse analysis – Dan Goodley
2 I have argued in this book that Gerry O’Toole’s story reflects a non-
3 participatory ethnographic methodology, drawing upon a poststructuralist
44111 approach to narrative and the phenomenon of learning difficulties. In this
114 Frameworks

1111 section, I will consider how I attempt to make sense of the story. What
2 is needed is an approach to analysis that allows us to answer the original
3 research question posed by the author: What can one story tell us about
4 the social and cultural worlds inhabited by people with learning difficul-
5 ties? In addressing this question, we will continue with our engagement
6 with a poststructuralist epistemology, by drawing on a poststructuralist
7 method: discourse analysis.
Discourse, subjectivity and self
1 As we saw in Chapter 7, poststructuralism alerts us to the multiple, frag-
2 mented and socially constructed nature of the self and the individual (Burr,
3 1995). Burman and Parker (1993) argue that discourse analysis is a post-
4 structualist method that provides a social account of subjectivity. Rather
5 than viewing subjectivity as being in the heads of individuals, discourse
6 analysts turn to the practices, texts, assemblages of knowledge, documents,
7 experiences and narratives of given social and cultural locations in which
8 subjectivities are constructed. Discourses are social phenomena in the sense
9 that whenever people speak, listen, write, read or act, they do so in ways
20111 that are determined socially and have social impacts (Fairclough, 1989,
1 p. 23). Sidell provides a rather literal view of discourse:
3 How a discourse exerts power is through individuals who become its
4 carriers by adopting the forms of subjectivity and the meanings and
5 values which it propounds. This theory provides an understanding of
6 where our experience comes from and can explain why so many
7 of our experiences and opinions are sometimes incoherent and contra-
8 dictory.
9 (Sidell, 1989, p. 268)
1 Sidell’s use of the term ‘individual’ here is problematic. You will recall
2 from the previous chapter, that a poststructuralist epistemology challenges
3 the notion of the a priori existence of an agentic, embodied, humanist
4 human subject. This view of human beings is itself a creation of domi-
5 nant discourses of modernity (Butler, 1990). Discourse analysis furthers
6 this critique by interrogating those powers and practices that create human
7 subjects. Discourse analysis deals with conflicting, subjugating and insti-
8 tutionally founded discourses that posit particular versions of self,
9 personhood and subjectivity. Discourse analysis may allow us to make
40111 sense of the ways in which human beings are shaped and moulded, via
1 the power of discourses, in given social and cultural backgrounds. This
2 links directly with the original research question of the author: to inves-
3 tigate social and cultural meanings in the lives of people with learning
44111 difficulties through the analysis of one narrative.
Frameworks 115

1111 Discourse, power and regulation

2 For Cicourel (1980), discourse analysts need to make explicit reference
3 to broader cultural beliefs. Such an approach typifies a particular view of
4 discourse analysis – that discourses are tied to socio-cultural and polit-
5 ical dominance and regulation (Burman and Parker, 1993). While some
6 discourse analysts have aimed to unearth inconsistency, variability and
7 contradiction in talk (e.g. Potter and Wetherell, 1987) and others have
8 illuminated the argumentative qualities of rhetoric (e.g. Billig, 1996), those
9 of a more critical or political leaning aim to engage explicitly with the
1011 relationship between discourse, power and regulation (e.g. Henriques et
1 al., 1984; Burman and Parker, 1993). This latter stance draws heavily on
2 the work of Michel Foucault (1973a, 1973b, 1977, 1980, 1983). Foucault
3111 was interested in the ways in which social and cultural locations fed upon
4 discourses which masquerade as ‘truths’. Discourses are also practices that
5 fit particular societal needs: to rehabilitate the offender in a prison setting;
6 to cure the irrational madman; to enforce normalised notions of sexuality
7 in schools; to subject patients to medical expertise and interventions. These
8 discursive practices are particularly noticeable in what Rose (1999) terms
9 the psy-complex: those psychological, educational, human, welfare, health,
20111 rehabilitative and knowledge systems associated with ‘the abnormal’.
1 Within the psy-complex, Foucault suggests that it is possible to investigate
2 elusive practices of power such as ‘technologies of the body’, ‘disciplinary
3 powers’ and ‘professional gaze’. Foucault was interested in those stories
4 that illuminate some of these discursive practices in given cultural places.
5 Such an approach fits with the original research question of interrogating
6 social and cultural worlds through the story of one person with learning
7 difficulties.
30111 Governance, subjectification and resistance
1 All human subjects are open to a gamut of discursive regimes that ‘allow’
2 them opportunities for making sense of themselves. While common sense
3 may have us believe that increased knowledge of ourselves is a good thing
4 – it results in enlightened individuals and developed societies – there is a
5 price to be paid. The increased production in knowledge in late capitalism
6 has given rise to many versions of self. We feel free to understand,
7 to better and to develop ourselves. Alas, Foucault argued, we are free
8 only to govern ourselves. The power of discourse works in elusive ways.
9 We know how we should act in given settings. We are aware of the limits
40111 of where we can appropriately go in our identity construction. We are
1 free, but only to act in ways that we know we should act. Discourses
2 inform our thinking about how we should be at given times and specific
3 places. The final product of this process is that of subjectification; expe-
44111 rienced as an inner consciousness, it is created by drawing upon available
116 Frameworks

1111 repertoires. Certain institutions and their members are particularly open
2 to forms of governance and subjectification. People with learning diffi-
3 culties – such as Gerry O’Toole – are regulated, closely observed and
4 controlled by professional intrusions. Complementary discourses such as
5 ‘medicalisation’, ‘psychology’ and ‘individual’ are brought to bear on the
6 professional and self-governance. These discourses are especially accepted
7 – and become almost commonsensical by nature – in institutions of group
8 home, day centre, special school and segregated workplace. People with
9 learning difficulties are allotted subject positions of ‘client’, ‘patient’ and
1011 ‘service user’ and the associated discourses are replenished outside of
1 institutions by others’ usage of them. This fits with the original research
2 question: to interrogate the workings of cultural and social worlds of
3 people with learning difficulties.
4 Foucault famously wrote that where there is power there is also resis-
5 tance (Foucault, 1977). At its most radical, a poststructuralist discourse
6 analysis exposes the categories of ‘person’ and ‘learning difficulties’ as
7 entities formulated in power relationships of language by key knowledge-
8 producers of the psy-complex. However, things that are ‘man-made’ can
9 often be demolished and rebuilt. While there are individuals and institu-
20111 tions with more access to discursive raw materials, possibilities exist
1 for rebuilding versions of humanity. The discourse analyst not only exam-
2 ines the wider socio-cultural origins and impacts of discourses (and the
3 consequent subject positions, objects and possibilities for subjectification)
4 but also explores opportunities for resistance to dominant governing
5 discourses. Discourse analysis is a resistant approach to analysis: resisting
6 static, structuralist and immovable views of discourse while embracing
7 resistant performative acts of human subjects. Following Wilkinson and
8 Kitzinger (1995, p. 3), it aims to explore what it means to be a person
9 with learning difficulties in the modern tale, by interrogating those
30111 discursive practices that constitute versions of self and ways of being for
1 people so labelled. Discourse analysis allows us to interrogate the social
2 construction of Gerry O’Toole and his peers.
Voice relational approaches – Rebecca Lawthom
6 Colleen’s account of her life is analysed drawing upon voice relational
7 approaches. Here, I (Rebecca) present the facets of this approach and how
8 it may be used in an emancipatory fashion.
Introducing a voice relational approach
2 The voice relational approach arises from a long feminist tradition of
3 engaging with women and for women. Brown and Gilligan (1992, p. 22)
44111 point out that
Frameworks 117

1111 Recasting psychology as a relational practice, we attend to the rela-

2 tional dimensions of our listening, speaking, taking in, interpreting,
3 and writing about the words and the silences, the stories and the
4 narratives of other people.
6 The method has its roots in clinical and literary traditions, interpretive
7 and hermeneutic theories and relational understandings. Hermeneutics –
8 the study of scripture or meaning – ensures that the analyst attends to
9 the meanings held by informants of their worlds. This positioning of voices
1011 as relational within the analysis, is an explicit step in feminist research,
1 which has traditionally listened to women to understand lives ‘in and on
2 their own terms’, and thus to ground theory in women’s own experiences
3111 (Du Bois, 1983; Finch, 1984; Brown and Gilligan, 1992; Henwood and
4 Pidgeon, 1992). Much of the feminist work within the qualitative tradi-
5 tion has problematised the notion of ‘voice’ and power within research.
6 What this approach offers is multiple readings of an account, potentially
7 offering richness and complexity while retaining a self/person/individual
8 within the story. Larson (1997, p. 456), following her experience as a
9 story-giver, suggests that:
We rethink traditional monological practices in narrative inquiry and
use dialogical processes that assist story givers in untangling the
complex meanings of their own lived experience.
6 Feminist thinking about reflexivity has elucidated the need to address two
7 aspects of the research process: first, the nature of the research relation-
8 ship and second, its relation to theory construction and epistemology.
9 Haraway’s (1991) notion of ‘situated knowledges’ acknowledges that
30111 theory production can only be a social activity embedded in culture, society
1 and history.
3 Doing voice relational methods
5 Voice relational methods can and should be used collaboratively to, first,
6 tease apart and then make sense of narratives. Broadly, the analysis takes
7 the form of a number of distinct readings of the narratives. Four read-
8 ings are undertaken: first reading for plot and our responses to the
9 narrative; second, reading for the voice of ‘I’; third, reading for relation-
40111 ships; fourth, placing people within cultural contexts and social structures.
1 A more detailed description is given in Box 8.1 (after Brown et al., 1989;
2 Brown and Gilligan, 1992; Mauthner and Doucet, 1997).
118 Frameworks

2 Box 8.1 Voice relational methods: an overview
3 Reading 1: Reading for plot and our response to the narrative
4 What are the story, the characters, the sub-plots? Recurrent images,
5 words and metaphors are listened to. The reader is encouraged in
6 this reading to read for herself in the text, placing herself in rela-
7 tion to the person (background, history and experiences). This allows
8 the reader to examine how her assumptions might affect interpre-
9 tation. Both social location and emotional responses allow the reader
1011 to use reflexivity to track one’s own responses to the text.
2 Reading 2: Reading for the voice of ‘I’
3 In this reading, we look for ‘I’ and how this shifts to ‘we’ or ‘you’
4 when discussing perceptions or experiences. Brown and Gilligan
5 (1993) term this discovery ‘how she speaks of herself before we
6 speak of her’. The analysis here aims to stay with the respondent’s
7 multi-layered voices (I/we/you) rather than slotting them into single-
8 layered themes or memos (as with other qualitative analyses).
20111 Reading 3: Reading for relationships
1 In this reading, we look for the way in which respondents speak
2 about interpersonal relationships with other people and broader
3 social networks. There is a conscious reading for relationships that
4 examines connections, autonomy and dependence.
6 Reading 4: Placing people within cultural contexts and social
7 structures
8 Here the narrative is explored in terms of broader political, cultural
9 and structural contexts.
4 Clearly, there is some overlap between these four readings, as they consti-
5 tute reading and re-reading of the same account. However, each distinct
6 focus aims to span and track the individual’s agentic voice together with
7 the voices of those in relationship with the individual, through to shared
8 societal discourses. The focus on voice aims to transform the act of reading
9 into an act of listening as the reader takes in different voices and follows
40111 them through the narrative.
1 The readings undertaken in voice relational analysis can be done (and
2 were by Brown et al., 1989, 1991) in group settings. This allows diver-
3 sity to emerge. For my analysis, to ensure that an emancipatory stance
44111 was taken, Colleen was involved in all stages of the analysis. The written
Frameworks 119

1111 finished product is the result of a collaborative analysis. The four read-
2 ings were presented to Colleen and we then discussed and shared how
3 we saw these analyses working on the data. The more detailed discussion
4 of this process is found in Chapter 9.
Grounded theory – Michele Moore
8 Grounded theory (Glaser and Strauss, 1967; Glaser, 1995, 1998; Strauss
9 and Corbin, 1990, 1997) was chosen as the best analytic tool for making
1011 sense of David’s story because it offers a well-established approach to
1 ensuring that ideas and recommendations which the researcher develops
2 and makes emerge from the data, are grounded in what key participants
3111 have contributed through their words and experiences. Grounded theory
4 gives an analytic qualitative approach explicitly concerned with seeking
5 out theoretical explanations for what is going on in any given research
6 situation, and is sufficiently adaptable to be fitted to projects in which
7 both the research methodology and the process of analysis are developing
8 in unpredictable ways.
9 In addition, grounded theory analysis is not dependent on any partic-
20111 ular methodology and even data collected at the limits of standard research
1 practice – such as characterised researching with David – can be subjected
2 to analytic scrutiny using this approach. For instance, it is not impera-
3 tive to have detailed notes made in situ for grounded theory analysis.
4 There is no requirement for transcription or verbatim recordings and
5 frequently leading grounded theory analysts advocate against the use of
6 extensive note-taking and tape-recording in situ, arguing that these are
7 distracting and intrusive habits. As explained elsewhere, note-taking was
8 prohibited in the research with David – occasionally he allowed a few
9 jottings, which of necessity turned out to consist at best in a few words
30111 hurriedly pulled together to try to capture an important emerging theme.
1 All in all, grounded theory provided a congenial strategy for handling the
2 irregular material that this peculiar research journey had called forth.
3 Grounded theory is often described as an ‘emergent process’ in the sense
4 that theory is envisaged as surfacing through assembled data. In fact, from
5 the outset I was using Oliver’s work on the social model of disability to
6 shape the theoretical persuasion of the project, so in this sense I was
7 predisposed to ‘force’ the data into a theoretical framework rather than
8 to allow alternative theoretical explanations to unfold. I claim to have
9 kept a realistic eye on the necessity for reconstruction of the chosen theor-
40111 etical position. But following this adaptation of one of the defining
1 dynamics of grounded theory means that the application of grounded
2 theory in this project could be seen as misappropriated. This adaptation
3 need not, however, be taken to imply that the theoretical framework devel-
44111 oped is any the less robust. Glaser and Strauss (1967) place emphasis on
120 Frameworks

1111 theories as being generated from observation and from logical assump-
2 tions – in the case of this study both were made from both within and
3 beyond the focal project.
4 The process of making analysis using grounded theory at all times over-
5 lapped with the processes of collecting the data. From the very first time
6 David was brought to my attention, as I was seeking to make sense of
7 what was happening to him and to gain insight into how he was expe-
8 riencing what was happening, the social model of disability unavoidably
9 sprang to mind. The opening gambit ‘No one knows what’s wrong with
1011 him’ provoked me to research action precisely because I was fiercely
1 committed to resistance of individualised and pathologising images of
2 disabled people’s lives and the data very quickly began to fit neatly with
3 this commitment. The social model of disability provided the theoretical
4 foundation of the study and also rendered analysis and data collection
5 more than overlapping processes, for they were integral to one another.
6 There is a good chance that somewhat improper use has been made of
7 grounded theory in this study by forcing data to fit a preconceived theor-
8 etical agenda, but an alternative reading is that this approach to analysis
9 served to cross-validate important theoretical understandings already
20111 offered.
1 For the analysis I sought to identify categories of data which encapsu-
2 lated important themes. As our meetings proceeded and a dialogue built
3 up, I became increasingly conscious of barriers that were underpinning
4 David’s experiences of disablement – ‘disabling barriers’ became a core
5 category or organising theme. I then identified sub-categories such as ‘envi-
6 ronmental barriers’, ‘social barriers’, ‘service provision barriers’, ‘financial
7 barriers’, ‘barriers to personal relationships’, ‘personal assistance barriers’
8 and so on and wrote notes to myself under each of the headings. For
9 example, under ‘environmental barriers’:
1 David doesn’t have his own entrance . . . can’t get to the front door
2 without assistance.
4 He mentioned the intercom and worrying that people switch it on to
5 eavesdrop.
7 Talked about the intercom [again] and not being able to switch it off
8 independently.
40111 New categories were added as time went by. Some categories generated
1 new categories as they grew and the sophistication of the debate became
2 clear, so that entries under ‘service provision barriers’, for example, were
3 further divided and recoded to make use of a new category, ‘silencing
44111 and collusion’. In the margins of the notes I added links to literature that
Frameworks 121

1111 came to mind, or needed to be looked up, and made notes of any connec-
2 tions to other research of which I knew. This is called ‘memoing’ by some
3 grounded theory writers (e.g. Dick, 2002). I was constantly on the look-
4 out for experiences or data that could not be coded with reference to the
5 social origins of disablement, but there were none. This meant that
6 the analysis began to feel ‘safe’. There is a kind of integral rigour built
7 into grounded theory as you search for evidence which disconfirms your
8 favoured theory – the fewer ‘discarded observations’, i.e. observations
9 falling outside the theoretical framework being used, then the more
1011 confidence you can have that the theoretical explanation is ‘working’.
1 ‘Constant comparison of data’ with other sources is a key ingredient
2 for validation in grounded theory analysis. There was constant compari-
3111 son from moment to moment in conversations with David, comparison
4 across conversations between David and others, comparisons to be made
5 from one day to the next and of course comparisons to be made between
6 what was coming up in situ and what was being said in the relevant
7 research literature. All of these comparisons, without exception, endorsed
8 a theoretical explanation that looked to the social origins of disablement.
9 In this study I did not have any expectation that it would be possible
20111 to engage in additional sampling to take stock of whether David’s situa-
1 tion was ‘like’ or ‘unlike’ others, and I was not optimistic of finding people
2 in similar situations whose experience could strengthen the theory being
3 generated. However, a fellow researcher I was in contact with at the time
4 was involved in discussions about planned suicide with a disabled woman
5 in another part of the country. We made ongoing comparisons of the
6 situations of David and the woman Tina. What happened to Tina is, as
7 they say, another story. But it was instructive to note at the time that
8 Tina’s experiences cross-validated David’s and the explanatory powers of
9 the social model of disability entirely fitted her story too. Other cases of
30111 disabled people seeking suicide as a ‘positive’ option have since been
1 reported in the press and these too have offered up points for compara-
2 tive analysis. The final aspect to building the analysis involved gaining
3 familiarity with research literature and other writings which could be
4 connected to the emergent data and categories.
5 The analysis I constructed is presented in the next chapter. It shows
6 the theoretical explanations derived from the orgnasiation of the data into
7 categories and provides a new body of knowledge on disability and the
8 life course that is uniquely grounded in David’s story.
Literary criticism – Peter Clough
2 Of the many frameworks which might be employed in the ‘analysis’ of life
3 story research, we might call upon the structures and ideas of Plato. It goes
44111 without saying, I think, that it is somewhat presumptuous to believe that
122 Frameworks

1111 one can analyse a life story. What is a life story, but something already ren-
2 dered and interpreted? That said, there are structures and frameworks at
3 work in us as we create and/or read life stories, and the positions set out
4 by the discipline of literary criticism come into play when we seek to iden-
5 tify the themes and structures at work in the stories. In the third book of
6 Plato’s Republic, Socrates posits a distinction between two ways of ren-
7 dering speech: diegesis and mimesis. The characteristic feature of diegesis
8 is that ‘the poet himself is the speaker and does not even attempt to sug-
9 gest to us that anyone but himself is speaking’ (Plato, 1963, p. 638). In
1011 mimesis, on the other hand, the poet tries to create the illusion that it is
1 not he who speaks (ibid., p. 106) (see Figure 8.1).
diegesis mimesis
4 poet as speaker ‘other’ as speaker
6 Figure 8.1 Representation of the diegesis/mimesis polarisation
9 The polarisation of diegesis and mimesis reappears under the names of
20111 ‘telling’ and ‘showing’ in Anglo-American criticism of the end of the twen-
1 tieth century and the beginning of the twenty-first. ‘Showing’ is the
2 supposedly direct presentation of events and conversations, the narrator
3 seeming to disappear (as in drama) and the reader being left to draw his
4 own conclusions from what he ‘sees’ and ‘hears’. ‘Telling’, on the other
5 hand, is a presentation mediated by the narrator who, instead of directly
6 and dramatically exhibiting events and conversations, talks about them,
7 sums them up. Figure 8.2 represents a combination of the polarisations
8 of diegesis and mimesis with the modern notions of ‘telling’ and ‘showing’.
9 Percy Lubbock (in 1921) erected ‘showing’ into the highest ideal to
30111 which narrative fiction should aspire:
2 The art of fiction does not begin until the novelist thinks of his story
3 as a matter to be shown, to be so exhibited that it will tell itself.
4 (Lubbock, 1963, p. 62, orig. pub. 1921, author’s emphasis)
7 diegesis mimesis
poet as speaker ‘other’ as speaker
‘telling’ ‘showing’
1 narrator as ‘mediator’ narrator ‘disappears’
3 Figure 8.2 Representation of the diegesis/mimesis polarisation of Plato and modern
44111 structures of ‘telling’ and ‘showing’
Frameworks 123

1111 On the basis of this norm he attacks novelists such as Fielding, Thackeray
2 and Dickens whose narrators opt for ‘telling’ – they tell, sum up and
3 comment (Rimmon-Kenan, 2002, p. 107). We can take this framework
4 for thinking about stories further. Iser (1971, p. 285) argues:
6 No tale can be told in its entirety. Indeed, it is only through inevitable
7 omissions that a story will gain its dynamism. Thus whenever the
8 flow is interrupted and we are led off in unexpected directions,
9 the opportunity is given to us to bring into play our own faculty for
1011 establishing connections – for filling in gaps left by the text itself.
1 (Rimmon-Kenan, 2002, p. 127)
3111 So, when in this book you read the stories – of Gerry O’Toole, Colleen,
4 David and Frank – you bring to the reading your own structures of
5 analyses. Your own literary criticism, your own preferences for ‘being
6 told’ or ‘being shown’. Readers of the most difficult stories are asked to
7 do some of the analytical work themselves. Frank, for example, asks
much of the reader; even though subsequent sections of the book ‘unpack’
parts of the writing and generation of the story, the story itself ‘tells’
little. Frank leads the reader to a place where they might begin to search
for the meanings and issues which lie behind and surround the story.
Where the ‘art’ of the literary is concerned, there is a strong argument
that the structures and analytical frameworks are – actually – unimpor-
tant. What matters is what works, what appeals, what persuades. And if
we are to make stories which push at the boundaries of the narrative turn
and challenge their readers to create their own meanings from them (using
their own personally informed structures of analyses) then should we not
9 be creating new frameworks, new structures and new positions from which
30111 we make meaning from those stories? This is a difficult but essential task,
1 for, as Sterne has it:
3 Shall we for ever make new books as apothecaries make new mixtures,
4 by pouring only out of one vessel into another? Are we for ever to
5 be twisting, and untwisting the same rope? For ever in the same track
6 – for ever at the same pace?
7 (Sterne, 1977, p. 167)
1 Too often, social and educational researchers launch into analysis without
2 exposing the frameworks they are drawing upon. In this chapter we
3 have seen how very different frameworks will disrupt the narratives
44111 they are trying to understand in ways that lead to particular types of
124 Frameworks

1111 knowledge production. We toyed with the idea of analysing each others’
2 stories with our own analytical approach in mind. This would have
3 provided some interestingly different interpretations of the four stories
4 presented in Part 1 of this book. For now, we hope that you have some
5 understanding of various analytical approaches and their impact upon the
6 reading of stories.
Chapter 9
Four analyses of life stories
3111 Without further ado, we now present four analyses that draw on four
4 analytical approaches.
A discourse analysis of Gerry O’Toole: A design
for life – Dan Goodley
9 Back to our research question, posed in Chapter 5 by the author of Gerry
20111 O’Toole’s story: What can one story tell us about the social and cultural
1 worlds inhabited by people with learning difficulties? Discourse analysis
2 allows us to answer this question by examining the ways in which Gerry
3 and others are moulded by the power of discourses. Following Wilkinson
4 and Kitzinger (1995, p. 3), analysis aims to explore what it means to be
5 a person with learning difficulties in this post/modern tale, by interro-
6 gating those discursive practices which constitute versions of self. While
7 Gerry has told his story, this is the analyst’s supplementary story. Three
8 discourse analyses are offered.
The construction of people with learning difficulties
as objects
3 Learning difficulties are often considered to be objectified naturalised
4 phenomena. They are something people are tragically born with. Organic,
5 unchanging and resolute. Yet, Gerry’s stories demonstrates what
6 Titchkovsky (2002, p. 105) calls the thingification of the world, persons
7 and experience, which produces a phantom objectivity and denies and
8 mystifies the body’s fundamental nature as a relation between people. If
9 we take the stories of Bant and David in Chapter 1 we can see a continuum
40111 of objectification from person with learning difficulties as plaything
1 through to person with learning difficulties as object of abuse. Bant’s
2 friend and Brig’s workmate are no longer human subjects: they are objects
3 to be reacted to and objectified further. Note, also, the unspoken elements
44111 of how impairments such as learning difficulties are constructed: ‘You feel
126 Findings

1111 it inappropriate to catch my eye,’ writes Gerry, not because others’ lack
2 social skills but because of the performative awkwardness of reacting to
3 troubling objects (Butler, 1990). Following Titchkovsky (2002), the
4 observer is caught between seeing the object (‘the learning disabled’) and
5 subject (a passer-by on the street). Gerry is clear about where these contra-
6 dictory understandings reside: in a world where groups of people ‘bat for
7 different sides’: the objectifier/signifier and the object/signified. Such an
8 understanding of impairment-as-object is significant: crucially, people with
9 learning difficulties are objects.
1011 Impairment construction, through objectification, has contributed
1 markedly to the exclusion of people identified as those objects: they are
2 literally and metaphorically unable to open doors, as with Gerry’s peers
3 at the conference in Scotland. People with learning difficulties are aware
4 of the consequences of objectification; hence, the move towards the label
5 ‘People First’ suggested by Gerry and his peers who organised their group
6 under such a banner. This choice of name speaks of a history of being
7 viewed solely as an object of understanding, ridicule, intervention and
8 control. And, often, as a disposed object. As Tremain (2002, p. 42) puts
9 it, disability has been impairment all along. A crucial part of the exclusion
20111 of people with impairments – what may be defined as ‘disability’ (Oliver,
1 1990, 1996) – is the very construction of their impairments and there-
2 fore their selves as objects. Gerry O’Toole’s narrative displays the remnants
3 of being constructed as an object of intervention and the often horren-
4 dous consequences of such interventions. This life story tell us that the
5 social and cultural worlds inhabited by people with learning difficulties
6 are often ones in which they are liable to be constructed as objects – as
7 opposed to the ‘people first’ that they want to be.
Governance and subjectification
1 Gerry’s story can be seen as a tale of the psy-complex (Rose, 1999). Many
2 of Gerry’s peers are continuously monitored and disciplined by profes-
3 sional chaperones. There is a sense that Gerry is very much aware of the
4 psy-complex’s location in the institutions of special schools – ‘funny build-
5 ings, strange places, labelled as soon as you got there’. However, the
6 psy-complex is not limited to professionalised institutions. The psy-
7 complex is part of wider society. From Ricky Lake and Oprah to self-help
8 books, counselling and everyday self-reflection, domineering discourses of
9 our ‘selves’ – and how our selves should be – are felt and experienced in
40111 everyday life. Versions of self do not remain in institutions, but are formed
1 and reformed in everyday contexts. People with learning difficulties are
2 ‘village idiots’, ‘the funny backwards chap’, ‘the special needs kid’ – the
3 easy piss-take in the working men’s club. As part of our wider ‘need’ to
44111 understand ourselves – a key progressive aim of a civilised, modern society
Findings 127

1111 – power is afforded those, at given times, who utilise discourse’s explana-
2 tory and regulatory qualities. We know a ‘handicapped person’ just from
3 looking at them: we have the available knowledge resources, and conse-
4 quently, we often feel we have the power to know; and the power that
5 comes from knowing. This knowing of self – and how self should be –
6 has been termed governance. This can range from governing others (such
7 as gazing at the abnormal in the vignette of David) through to more
8 elusive self-governance (‘now things are a lot more subtle’). David was
9 free to make a choice, to go on holiday, which then resulted in long-term
1011 exclusion. In making sense of ourselves, we draw upon available discourses,
1 which may give us a sense of agency. However, we are free only to govern
2 ourselves. As Kurtz (1981, p. 14) puts it, ‘acting like a retarded person
3111 [sic] can soon become second nature’.
4 Essentially, modern human subjects are open to a gamut of discursive
5 regimes and practices which allow them opportunities for making sense
6 of themselves. The final product of this process is that of subjectification
7 – experienced as an inner consciousness, created by drawing upon avail-
8 able discourses (governance). While common sense may have us believe
9 that an increased knowledge of ourselves – and resultant subjectification
20111 – results in enlightened individuals and developed societies, there is a price
1 to be paid.
5 Box 9.1 Subjectification in Gerry O’Toole’s life story
6 Subjectification for people with learning difficulties appears to
7 be associated with their bodies and minds being rendered in the
8 following ways:
30111 • docile (students fell asleep in Gerry’s class);
1 • passive (the staff insist on Maureen leaving the door open when
2 she is having a bath);
3 • controlled (Katy is not allowed to come to People First meet-
4 ings if she behaves badly);
5 • incompetent (not to be trusted with a cigarette lighter);
6 • pawns (to be moved from group home to group home);
7 • unknowing (not informed about the death of Maddie Harrison).
1 Gerry knows his place in the cooking class at the day centre, and excuses
2 it as an opportunity to see friends – but is this a knowing acceptance? A
3 politics of pity for the member of staff? Or a subjectification of his subject
44111 position as client to be taught by the staff member? For people with the
128 Findings

1111 label of learning difficulties, such as Gerry O’Toole and his peers, their
2 daily lives are regulated and controlled by professional intrusions.
3 Education is increasingly multi-layered in terms of the increasing forms
4 of professionalisation. While the ambulances and large-scale institution-
5 alisation of Gerry’s childhood might have disappeared, the advent of a
6 host of specialist services (psy-complex), discourses of self-knowledge
7 (governance) and their application (subjectification) create a new horrific
8 realisation: at least when institutionalised in the old hospitals, inmates’
9 minds had wings. We learn that the social and cultural worlds inhabited
1011 by people with learning difficulties are ones that are closely policed, moni-
1 tored and controlled, which in turn may subject people to ways of seeing
2 themselves that are worthless and incapable.
Resilience and resistance in the midst of the psy-complex
6 Gerry’s story is ordinary in the face of extraordinary experiences of other
7 people with learning difficulties, but still has the threat of disablement.
8 Discourse analysis is a resistant approach to analysis: resisting static, struc-
9 turalist and immovable views of discourse while embracing resistant,
20111 performative acts of human subjects. Foucault famously wrote that where
1 there is power there is also resistance (Foucault, 1975). At its most radical,
2 a poststructuralist discourse analysis exposes the categories of ‘person’
3 and ‘learning difficulties’ as entities formulated in power relationships of
4 language by key knowledge-producers of the psy-complex. Now, things that
5 are ‘man-made’ can often be demolished and rebuilt. While certain indi-
6 viduals and institutions have more access to discursive raw materials, pos-
7 sibilities exist for all to rebuild versions of humanity. The discourse analyst
8 explores opportunities for resistance to dominant governing discourses.
9 One key origin of resistance lies in the multiple selves and identities of
30111 a discursive world. During the day we may move between the subject
1 positions of parent, partner, colleague, consumer, player and lover. Each
2 of these positions has power connected to them. What is so telling about
3 Gerry’s narrative are the very different subject positions he holds – from
4 day centre user, to worker, to key member of the family, to member of
5 the pub team, to memberships of the working men’s club. The character
6 of this narrative is someone allowed to move in and out of institution-
7 ally created subject positions. Often, there are very direct acts of resistance
8 with tremendous symbolism – none more obvious perhaps than that Gerry
9 wanted to dig himself out of school! So characters in the narrative found
40111 that external (material) barriers challenged their subject movement. It is
1 therefore even more remarkable to see people who are so objectified by
2 the professional gaze finding spaces to escape subject positions – such as
3 Gerry O’Toole and comrades like Maddie Harrison. For some their new
44111 subject positions might have to take place away from the professional
Findings 129

1111 gaze: such as setting up the self-advocacy group outside of the day centre,
2 dispensing with the services of a member of staff as the group’s supporter.
3 Perhaps this is key to Gerry’s narrative – to enter contexts away from
4 the professionally populated spaces of learning difficulty services. It is
5 interesting to note that self-advocacy groups affirm positive visions of self
6 – People First – often in non-service, non-professionally led contexts. While
7 we should be wary of how the psy-complex can enter a whole host of
8 seemingly enabling spaces (Goodley, 1997), we are reminded that resis-
9 tance often takes place in invisible, hidden places.
1011 In the market, Gerry’s learning difficulties are invisible, though in the
1 curriculum of the special school they are exposed. Following Oppenheim
2 (1998) and Milbourne (2002), the school allows assessment of skills and
3111 abilities only through a host of dominating governing principles, which
4 may ignore wider skills that show up only in other institutional spaces
5 (such as the market). Gerry is a remarkable character. He slips in and
6 out of service settings and boasts a rich and varied experience of life. For
7 some of his peers, the opportunities are not so available. Here the actions
8 of potential resilient allies are thrown into sharp relief. Far from us
9 denouncing professional practice, we should be aware of the many profes-
20111 sionalised cultures where professionals are resisting. When Gerry talks
1 about ‘broken teachers’ he highlights the ways in which professional subject
2 positions are not all-encompassing and that professionals themselves are
3 caught up in the disabling world of the psy-complex. For resistance to be
4 read as meaningful, cultural exchange has to take place between partici-
5 pants in a social setting (Davies and Watson, 2002, p165). It is no surprise
6 that members of the People First movement, which Gerry and his peers
7 are part of, have spoken about those members of staff who have broken
8 the professional mould to offer alliances and comradeship (Goodley, 2000).
9 Gerry’s story is one of resilience and success as a consequence of the
30111 conditions in which he has found himself. Other characters – real people
1 who are real friends and comrades of Gerry – enter the fray. Often their
2 stories are situated in more oppressive and exclusionary practices and
3 institutions. Indeed, one of the key things for Gerry is his relative freedom
4 and occupation of a space outside of disability service work, care and
5 welfare. Intriguingly, his narrative ends with the final act of resistance –
6 lost, in love in Rotherham.
A voice relational analysis of ‘I’d never met a
vegetarian, never mind a lesbian’: Colleen’s story –
Rebecca Lawthom with Colleen Stamford
2 Following the principles of voice relational methods outlined in the pre-
3 vious chapter, the analysis of Colleen’s story is set out below as the
44111 analysis was undertaken – in four separate readings.
130 Findings

1111 Reading 1 – Reading for the plot and our responses

2 to the narrative
4 Reading for the plot
5 The main events in this story illustrate development, progression and a
6 largely heterosexual mainstream trajectory. By this, we mean the growing
7 up of girl into woman and mother. The main plot is one of personal
8 change and growth, at first perhaps within a boundaried community, yet
9 at the same time distinct within this community. The sub-plot is perhaps
1011 one of otherness, of not being the same, being different. Recurrent words
1 and images are ‘hard workers’, ‘work ethic’, ‘working class’. The whole
2 family worked hard (a mother with two jobs, a dad who worked hard
3 and did housework, a husband who worked hard and Colleen, for whom
4 working was also important). Money is a key image linked to this – the
5 family had more money and could go on holiday. Colleen took on Saturday
6 jobs in order to get money to buy nice things and later got a posh salaried
7 job in town. As a nuclear family unit, Colleen’s immediate family should
8 have been happy with what they had – owning their own house. They
9 had already exceeded the previous generation’s council house dwelling.
20111 Expectations are a key feature of the story – it didn’t matter what else
1 Colleen did, she would get married and have children (everyone did).
2 Pressure from church and family were subtly exerted (you did certain
3 things in a certain way). Work was only a temporary situation as absence
4 was expected – once you got married, you paid a smaller insurance stamp
5 and once young children came, work inevitably stopped for a while. Roles
6 and relationships were framed by expectation – Colleen’s mum reminding
7 her that her husband was ‘not going to stand for that’ regarding sepa-
8 rate sleeping arrangements. Confidence (sometimes its lack) and subsequent
9 choice enters the story in distinctive ways. Colleen ‘daren’t’ do O levels,
30111 she wouldn’t have her pick of the crop in terms of boyfriends – both due
1 to perceived attractiveness and confidence. ‘Mum said I was too big for
2 my boots.’ She found working in a mixed-gender environment difficult
3 (as being used to all girls). She was proud of her place at secretarial coll-
4 ege and this extended to her family. Colleen felt confident with voluntary
5 work settings such as those involving older people and people with learning
6 difficulties. Overall, she was not particularly confident in her early years
7 – ‘I was mediocre, not a sparkling personality, not particularly attractive’.
8 She also recognises the role of feedback in this – ‘Children grown like
9 flowers with praise.’ Success is a key concept Colleen uses (to judge her
40111 own competence). College, a nice job with smart people and owning a
1 house – are all markers of achievement (externally at least). Emotionally,
2 the children and later her new-found career bring happiness. The new job
3 brings personal success and being good at something. She chose to do
44111 nursing and loves it.
Findings 131

1111 Family dynamics and women at home are featured throughout the tale.
2 The expectation is that women will do housework and it is of no impor-
3 tance in this closed-off world. However, if men do this work, like child-
4 care, they are wonderful. Colleen’s family was different in terms of gender
5 division of labour – ‘my dad just loved my mum’ and thus did do house-
6 hold tasks (also because she was ill, depressed?). For Colleen, there is a
7 reversion to traditional roles – she and her husband did their own jobs but
8 she says ‘I did work plus on top of other things’. The roles of families and
9 dynamics are also present in the new nursing job – much is going on even
1011 if you can’t see it.
Reading for the sub-plot
4 The sub-plot is largely framed in terms of difference – Colleen’s difference
5 from both her family and her changing self (her own difference). Her early
6 memories are of her father doing housework and the childcare being main-
7 tained by the male side of the family. Her father realised this wasn’t nor-
8 mal, he ‘wouldn’t put the washing out’ as this was a public display. Colleen
9 comments ‘he was a New Man too soon’. Colleen feels she had to dress
20111 differently as she mixed with people from ‘posh parts’, perhaps overdressed
1 at times as she misjudged the dress code. Kudos came from this proper job
2 (not shop or factory work) and again this was different from the other girls
3 on the estate. Colleen says she was late getting married and late having chil-
4 dren (five years after marriage). She consistently feels not up to scratch –
5 being brought up where she was. ‘I hope I wasn’t a snob but wanted to
6 think I was better than some.’ Colleen’s parents did not understand why
7 Colleen wanted to work, following the children going to school, but Colleen
8 says, ‘you could be a new person.’ Colleen also talks about her married life
9 and her change/her difference in terms of growth from a quiet person to
30111 having an opinion and voicing it. From her ‘working-class’ life, she feels
1 the difference and had ‘never met a vegetarian let alone a lesbian’. She finds
2 people at her new workplace ‘alternative’, very complimentary and very
3 different. She recognises her own difference when she says, ‘I am good at
4 interaction, I have come full circle.’
Reader response
8 Reading my own response into the analysis is interesting. Colleen’s child-
9 hood is not like mine in certain ways. There are similarities such as both
40111 parents working and a nearby grandparent, but a very different set of
1 expectations surrounded me. As for Colleen, coming from a working-class
2 area was not an issue until leaving it and recognising the difference. For
3 me, it was leaving for university; for Colleen, it was mixing with ‘posh
44111 people’. I (Rebecca) assumed I was always going to go to university and
132 Findings

1111 unlike Colleen felt praised for things and confident. It was painful to hear
2 some of Colleen’s self-description as being mediocre and not attractive. I
3 find myself wanting the tale to ‘come good’. Emotionally, it was a warm
4 interview and a warm tale. Theoretically, while reading it through, we
5 are thinking of early relationships and learning how to get praise (devel-
6 opmental frameworks). Using a feminist lens, I am also seeing women as
7 often disadvantaged (by patriarchy) and therefore more limited in choices.
8 However, working mothers (which we are) are not given a panacea with
9 better childcare provision and I find myself agreeing with Colleen regarding
1011 women’s unequal domestic load. Reading the tale as a narrative of change
1 and transformation (from a feminist orientation), are we attributing
2 Colleen’s ‘freedom’ from domestic heterosexuality to the remedy provided
3 by a woman partner? I find myself engaging with the change aspects of
4 the tale – but on re-reading again and again, see much in the story that
5 is stable and being engaged and fulfilled at various points in her life.
Reading 2: Reading for the voice of ‘I’
9 The second reading follows the method suggested by Mauthner and
20111 Doucet’s (1997) adaptation of Brown and Gilligan (1992). Using a
1 coloured pen we traced Colleen’s use of the pronouns ‘I’, ‘we’ and ‘you’.
2 Looking at this allows the space between an active ‘I’ or where ‘I’ is strug-
3 gling to say something to shift to a ‘we’ or a ‘you’. This second reading
4 for personal pronouns allows the narrator(s) to speak for themselves –
5 attending to ‘I’. As listeners, we try to hear the person and the way she
6 speaks about herself. For Colleen, reading for ‘I’ was really important in
7 displaying the tension between what she did, liked, felt proud of and a
8 wider dominant set of voices about what should be done. Personal expect-
9 ations and interpretations of events are inextricably linked to the cultural
30111 values and norms which surround them. Colleen talks of achievement, ‘I
1 would never have gone to do nursing training’, ‘I would have thought it
2 was far above me anyway’ and the tension with others regarding expect-
3 ations, ‘You never thought about whether you’d be happy doing that or
4 what would happen if you didn’t’ and ‘if you had no expectations of
5 yourself you could easily be left out and done nothing’. At key points in
6 the narrative the active, agentic ‘I’ switches to locating herself in a domin-
7 ant culture where behaviour is prescribed:
9 I had never had a long-term boyfriend at all and already you were
40111 beginning to think that maybe it wasn’t going to happen and then
1 what would you do?
3 At other times the narrative is informed by social and structural contexts
44111 and then turns to the personal:
Findings 133

1111 Certainly if you hadn’t got married by the time you were 20 you
2 were definitely thinking you were going to be left on the shelf and I
3 remember when I got pregnant at 25 I was old.
5 This kind of analytical reading retains the individual (across ambiguous
6 discourses) rather than distributing and reconstructing them across themes
7 (as in thematic analysis).
Reading 3: Reading for relationships
1 In the third reading we listened for the ways in which Colleen spoke
2 about her interpersonal relationships – family, relatives, children and the
3111 broader social networks. Again, using a coloured pen, we traced words
4 and phrases that related to this. This reading placed Colleen amidst a
5 complex set of competing needs. There is much sense of positive relating:
6 ‘My Dad, he’s really proud’, ‘it brought the entire family a lot of pride’,
7 ‘I think he just loved my mum and would have done anything for her’.
8 Moreover, there is also evidence of mixed emotions regarding rights and
9 responsibilities in Colleen’s domestic setting versus work.
1 I think it was just a thing of being Danny’s mum, or Rosa’s mum,
2 I was sick if being someone’s mum or someone’s wife, I just needed
3 to see if I could do something away from there where no one knew
4 you.
6 Later she talks of the home – work boundary:
8 But then I saw the light then and I am thinking, ‘Oh, hang on a
9 minute, why should I work and do the housework, and do the shop-
30111 ping and do the ironing and do everything, and all he had to do was
1 go out to work?
3 There is also, throughout the narrative, a sense of the inevitability of being
4 a mother and the pleasure gained from that:
6 I have to say when I got the job, I always thought in the back of my
7 mind that it didn’t really matter what I did because it wouldn’t be
8 for long, I would get married and have a baby.
40111 I had had the children . . . and I was happy staying at home, I think
1 that I liked doing it and I did it well and I felt confident with that.
3 There is a sense of growing confidence with regard to being competent
44111 at relationships:
134 Findings

1111 I didn’t feel good at interaction so I picked jobs purposefully to avoid

2 that contact. I have ended now in a job which has huge amounts of
3 that, and more of that than anything else. Actually, I am finding out
4 that I like it.
Reading 4: Placing people within cultural contexts and
social structures
9 For this reading, we looked at Colleen’s position within the broader social,
1011 political, cultural and structural contexts. There is evidence in her account
1 of a shift in terms of both values surrounding age – ‘Nowadays people
2 can do whatever they like at whatever age they want whether retraining
3 or going to uni, this is a good thing. I sound like an old crock but times
4 have changed and my life has gone full circle in some ways’ – and values
5 surrounding class – ‘Where I lived it had a very bad reputation whereas
6 now it is quite trendy to be working-class, isn’t it? Interestingly, her
7 perceptions of gender imbalance, particularly in relation to women and
8 sharing childcare, demonstrates more continuity than change:
20111 still women do exactly the same thing (as I did) they are just under
1 a different guise now. If the husband manages to pick them up (the
2 kids) a couple of times from the childminder or something. I work
3 with women who do it, who do a job, arranging the childcare and
4 the shopping. I am sure a lot of women think they have come a long
5 way. The childcare has improved and that is about it, I think.
7 This reading also allows a focus on institutions, structures and ideologies,
8 as providing strong enabling or constraining messages. Colleen talks of
9 expectations:
1 we had everything – our own house which me mam and dad had
2 never done (you know council houses were the norm really) so I had
3 made it in their eyes. Yes and that were it, your life stopped then,
4 you’d no need to bother doing anything else.
6 You weren’t meant to use birth control because we were both Catholics
7 . . . so yes, there was a lot of pressure on from church and it is
8 surprising what you take on board yourself without anyone actually
9 saying. You just like mini clock what you see.
1 The four distinct readings allow analysis to take place from diverse perspec-
2 tives that focus on action, characters and wider social settings. It is an
3 approach that seems to value and give prominence to voice, while allowing
44111 the voice to be changing and shifting.
Findings 135

1111 A grounded theory of The death story of David

2 Hope – Michele Moore
3 The analysis was built up using grounded theory to formulate a set of
4 theoretical explanations derived from David’s story following steps
described in Chapter 8. To recap briefly, the point of the analysis is
to reduce the data to manageable proportions and a central organising
theme was quickly identified as ‘disabling barriers’. Data were then sorted
into various categories of ‘disabling barrier’ – for example ‘environmental
barriers’, ‘barriers to social provision’ and so on. The sorting process
enabled an extensive sweep of the principal themes in David’s story. In
grounded theory studies, data analysis and the development of theory are
iterative processes, and as the data were organised into categories and
themes a common thread could be readily identified and substantiated.
Observance and interrogation of disabling barriers exposed the dominance
6 of medical discourses in everything that happened to David. This led to
7 a shaping of the analysis around the problem of ‘conceptualising resis-
8 tance to disabling barriers’.
9 As the categories are looked over and put together to construct a core
20111 set of findings, a narrative starts to be developed that examines the prop-
1 erties and meanings of the categories and looks at the theoretical
2 implications they generate. This examination of the material pulled together
3 as ‘data on David’s story’ comprises the development of the theory based
4 on the data. The theory emerging from this analysis is that what happened
5 to David can be understood with reference to the absence of a focus on
6 the social origins and significance of his disablement. Shifting the focus
7 towards social barriers would arguably have produced very different
8 outcomes for David.
9 The analysis raises questions about how to conceptualise David’s reac-
30111 tions to the immensely powerful medical discourses that structured his
1 life following spinal cord injury. It seeks to open up new possibilities for
2 the sharing of his experience and knowledge. It shows that while he was
3 silenced by oppressive medical discourses he was not subdued; he was
4 systematically overwhelmed because no credibility was attached to his
5 signposting of the multiple social barriers to a better life and his view-
6 point was given little respect.
7 An overview of the data suggests that these claims relate to three main
8 findings: fixation on a causal relationship between impairment and disable-
9 ment by providers and other key allies, disabling responses to David’s
40111 resistance to oppressive discourses, and the impact of services operating
1 coercively. As said before, I make no claims about the significance of
2 these findings but present them to prompt debate that will hopefully affect
3 positive social change.
136 Findings

1111 Fixation on a causal relationship between impairment

2 and disablement
3 The dominance of an assumption that there is an inevitable relationship
4 between impairment and disablement in everything that happened to David
5 exposes the power of the medical model of disability in his life. It meant
6 that service provision was specifically focused on impairment and far less
7 concerned with the problem of dismantling barriers to his participation
8 and inclusion in an ordinary life. The focus of key service providers was
9 always unbendingly fixed on the body–impairment dyad as the key deter-
1011 minant of David’s experience and this was compounded by nearly universal
1 acceptance of a causal and unchangeable relationship between impairment
2 and disablement. An ever-present medical discourse meant that David was
3 predominantly viewed as an impaired body rather than as a whole person.
4 His spinal cord injury was seen as the source of personal tragedy neces-
5 sitating a high level of support to be prescribed and regulated according
6 to the medical beliefs of the day. People thought about the impairment
7 and its presumed negative consequences much more than they thought
8 about him and his potential for transcending the limitations imposed by
9 impairment, given an adequately supportive community and culture.
20111 It can be seen from the data that medical discourses were constantly
1 presented as authorative in David’s life, yet the prescriptions of the medical
2 profession constituted an entirely regulative and oppressive source of
3 disabling barriers. Problematising impairment (rather than social barriers)
4 made it – and David – the key site of scrutiny and blame throughout his
5 life, as typified by the report of his inquest where commentators all looked
6 to David himself for an individualised construction of what had happened.
7 It was reported in the press that ‘he had come to the conclusion that he
8 couldn’t stand living with his body’. Failure to critique the medical model
9 of disability within social services led to an automatic presumption that
30111 David’s body was problematic to him; he was automatically pathologised
1 because he had a spinal cord injury. In fact David’s body was not the
2 major focus of concern to him. Inadequacies of service providers, which
3 subjected him to daily abuses of his body, violations of his dignity and
4 corrupted his relations with loved ones were at the centre of his despair,
5 but these factors were not interrogated and the individual blaming philos-
6 ophy enabled providers to place the locus of responsibility for what
7 happened beyond the failings of their services.
8 At David’s inquest, emphasis was placed on medical opinions and these
9 were treated as being clear-cut: ‘the GP said the full impact of his condi-
40111 tion began to be clear to Mr Hope . . . and he was assessed as clinically
1 depressed’, ‘the doctor said . . .’, ‘the district nurse said . . .’ and so on.
2 The privileging of medical models in discussions throughout his career as
3 a person with a spinal cord injury was such that the bearing and authority
44111 of assertions went unquestioned – making the prevalence of the medical
Findings 137

1111 model both more powerful and more dangerous. When David begged for
2 something to be done about unrelenting eye pain, his experience of pain
3 was negated by the GP’s view that nothing was wrong. His expressed and
4 unbearable pain was denied by diagnosis. Other people then endorsed the
5 perception of the medics – so that his mother would not ‘bother’ the GP
6 with David’s requests for new opinions. The favouring of medical opinion
7 can be seen over and over again, such as when Sheila made it clear that
8 she believed David should have stayed longer in a medical health insti-
9 tution and subjected himself to the views of medical practitioners, or when
1011 people pointed out the fine line to be navigated between seeking change
1 and being sectioned.
2 The assumption that impairment causes disability had leaked beyond
3111 the medical world and into wide-ranging cultural impressions of the
4 meaning of spinal cord injury. David, who did not accept the view that
5 he was pathologised by his injury per se, risked being further patholo-
6 gised by his own point of view, as the next part of the analysis shows.
7 He was clear from the start: ‘It wasn’t breaking my neck that made me
8 break down,’ but the more he said this the more firmly he was condemned.
Disabling responses to resistance of oppressive discourses
2 David’s personal perspective was invariably treated as problematic and
3 pathologising. His experiential knowledge of what was happening to him
4 was viewed as what Foucault calls ‘subjugated knowledge’ – it was afforded
5 less credibility than other sources of knowledge, considered far less cred-
6 ible than the knowledge of professionals, less credible than the knowledge
7 of non-disabled family and friends, less credible than my knowledge as
8 someone who knew him only very briefly.
9 Whenever David refuted other people’s views of what was happening
30111 to him, or refused to accept disabling recommendations, internalised
1 psychological explanations were sought to account for his resistance; he
2 was ‘lacking in positive mental attitude’, ‘making immense demands’,
3 ‘uncooperative’ or ‘attention-seeking’. There was rarely an attempt to look
4 at the social factors – and other people’s responsibilities – implicated in
5 David’s position. For example, the family GP said that David ‘lacked the
6 positive mental attitude to fully investigate the possibilities of work in the
7 computer field’ adding ‘he could use a mouth-stick and move around using
8 a chin-operator on his wheelchair’. This neglect of personal ambition
9 sweeps over the possibility that David was actively resistant to a coercive
40111 discourse that failed to take any account of his personal ambition. If we
1 place the locus of responsibility elsewhere, David might equally have said
2 that ‘the GP lacked the positive mental attitude to fully investigate the
3 possibilities of a fulfilling life after spinal cord injury’. It is plain that
44111 the GP could have chosen to use his professional networks to convene
138 Findings

1111 some imaginative joined-up working that might have harnessed David’s
2 personal ambitions.
3 Similarly, when the GP said that David ‘had a feeling that he had no
4 future and there was no point in living’, it is not out of the question that
5 providers had made David feel as if he had no future and there was no
6 point in living with their one-horse suggestion of work in the computer
7 field. Besides, in the ten months I knew him it proved impossible for the
8 entire entourage of family, friends and providers to fix David’s printer –
9 which casts a different light on the view that David was the intractable
1011 factor in the problem.
1 The expectation that David was ‘the problem’ again stemmed directly
2 from the nearly universal treatment of his spinal cord injury as a deter-
3 minant of disability – and could only produce outright defiance. He was
4 unwilling to take on a one-dimensional identity to enable service providers
5 to swing in around his impairment and then consider their job done. He
6 wanted recognition of the other parts of his individuality, he wanted
7 enablement of his identity as a son, an uncle, a friend, a lover, a writer
8 and so on, but he was objectified in the singular terms of his impairment
9 and this exhausted his personal powers of resistance to disabling barriers.
20111 To me, the data suggest that the assumption of a causal and inevitable
1 relationship between impairment and disablement was exploited to validate
2 a focus on David’s personal psychological capacity for generating personal
3 enablement or, conversely, constructing his own disablement. The upshot
4 of this was that the more he felt himself to be disabled the more this was
5 explained as ‘because he was lacking in positive mental attitude’, ‘too
6 depressed’, or accounted for with reference to any other individualised inad-
7 equacy that could be brought to mind. The more distance other people were
8 able to place between David’s experience of disablement and external
9 sources of oppression – many of which were perpetuated through their own
30111 gift – the less likely they were to be drawn into the – albeit uphill – task of
1 dismantling disabling barriers. I am not suggesting that David was deliber-
2 ately and systematically oppressed, but it seems clear that responses to
3 his resistance to oppressive discourses were disabling – and, moreover,
4 changeable. The notion that David’s resistances constituted reasonable
5 abdication of personal responsibility was never mooted. Thus the analysis
6 identifies many unanswered questions about why David died.
Impact of services operating coercively
40111 Ground floor access, respite, hoists, body braces, antidepressants, home
1 care attendants and so on comprised familiar and legitimate sites for inter-
2 vention in the eyes of service providers, and they focused their efforts for
3 David on the provision of services essential specifically for impairment.
44111 Appointments could be arranged for refitting a spinal brace (eventually),
Findings 139

1111 but action on the provision of a new printer so that David could produce
2 his own letters was beyond the bounds of possibility. He could be admitted
3 to a respite facility, but would be left to lie alone in bed for the dur-
4 ation. His life was defined entirely in relation to management of a C4
5 spinal lesion and without any reference to his entitlement to services which
6 would support him to do the things he wanted to. According to Morris
7 (1997) this is disempowering service provision that does not seek ‘to cut
8 through boundaries set by budgets, organisations and professional exper-
9 tise’ (Morris, 1997, p. 28). The boundaries that were set closed off the
1011 possibility of looking at David’s whole experience. Arguably he was starved
1 to death by a lack of attention to ‘budgets, organisations and professional
2 expertise’. David was given only two choices: to accept a causal link
3111 between impairment and disablement that was being presented by key
4 providers, or to reject the dominant discourse and be thereafter seen as
5 resisting advice, stubborn, ungrateful, abusive and ‘abnormal’.
6 David was expected to reconstruct himself following his injury from
7 being ‘independent, happy-go-lucky and challenging’ to being ‘dependent,
8 passive and compliant’, in order to minimise support difficulties for local
9 providers. Yet it was accepted even at the inquest that ‘despite his paraly-
20111 sis’ David’s ‘mind and intellect remained the same’. Observance of the
1 tension here comes from focus on ‘barriers’ in the data. Time and time
2 again, difficulties facing service providers were turned into sources of
3 oppression for David. An obvious example can be seen in the refusal to
4 permit David to have adequate choice or control over decisions relating
5 to respite – support difficulties for providers were used to justify his
6 oppression. His only choice was to have no choice – a situation that ‘is
7 indicative of the disabilism in society’ (Wareing and Newell, 2002).
8 Another invidious glimpse of how the provider agenda usurped his own
9 can be seen in the response of the case conference to his wish was to die
30111 at home. Social services reserved the right at all times to decide whether
1 they would allow him to stay at home. This decision was motivated by
2 a concern to protect home support staff who felt compromised by David’s
3 actions. So the difficulties social services faced in deployment of staff were
4 allowed to ride roughshod over his entitlement to personal choice and
5 control – even when he was dying.
6 The business of the spinal brace appointment provides another case in
7 point. With his back already bruised, blistered and bleeding, David dreaded
8 making the battering and agonising journey to be refitted over hundreds
9 of miles in a speed-restricted ambulance. He feared this journey so much
40111 that he chose not to make it even though he knew not going would make
1 it impossible for him to get out of bed ever again. Within the param-
2 eters of the chosen analysis it will by now be clear that the construction
3 of rehabilitation that the brace-fitting service was offering was unques-
44111 tionably a causal factor in David’s death. There was a gulf between service
140 Findings

1111 providers and David which left him on the receiving end of services and
2 practices that determined his desire to commit suicide. But all this was
3 changeable – the brace fitters could have travelled down to where he lived
4 in half a day. The presumed sticking point here brings to mind a point
5 made by Alldred, who noticed that invariably accountability is individu-
6 alised ‘when questions about financial obligations are raised’ (Burman et
7 al., 1996). This same discourse takes a different form in the senior social
8 care worker’s view that David made his decision to commit suicide because
9 he was shocked by the cost of independent living. The narrow focus of
1011 the medical model on the physical site of the body works most destruc-
1 tively when used to account for inadequacies in service provision.
2 Much of the advice and guidance David received was coercive. There
3 is no question about this, for example, in respect to the instruction that
4 he would have to convince hastily convened committees of his capacity
5 to cope with an independent living situation. The sanctions implied were
6 real: the case conference committee would not have taken David’s request
7 seriously if he had not complied with this directive, but to construe David
8 as lacking the capacity to cope with an independent living situation is
9 to seriously neglect the impact of an entrenched, individualised view of
20111 disability and to misapprehend the origins of disablement. To me the data
1 show that all of the social, community and health services around David
2 operated coercively. They frequently operated both against his will and
3 also in opposition to his entitlements. I would confidently say that the
4 disabling politics of community care made him commit suicide. And though
5 he was coerced through fear and pain and neglect in the relatively short
6 term of nine years living with spinal injury, ultimately he was not coerced.
7 He is, however, a long time dead.
Conclusions on analysis
1 In order to support other people in David’s situation this analysis suggests
2 that it is important to find ways of acknowledging the ramifications of
3 the medical model and the possibility of resistance to it. When it was said
4 that David ‘had come to the conclusion that he couldn’t stand living with
5 his body’, an alternative reading is that David ‘had come to the conclu-
6 sion that he couldn’t stand living with an oppressive medical discourse
7 that constructed his life with reference to his body as the sole determinant
8 of his identity and destiny’.
9 The medical occupation of David’s life was conveniently forgotten when
40111 it came to apportioning responsibility for his death:
2 A narrative verdict was recorded which was ‘David Hope died from
3 starvation after electing not to be fed after severe injuries suffered
44111 following a swimming accident.’
Findings 141

1111 Once again an analysis, using grounded theory to interrogate David’s side
2 of the story, exposes sufficient social explanations to warrant possible
3 reconstruction of the narrative verdict:
5 ‘David Hope died from neglect after service providers elected not
6 to support any aspect of his life which was not solely to do with
7 impairment after severe injuries suffered following a swimming
8 accident.’
1011 The analysis that emerges, from grounding theoretical development in the
1 social model of disability, gives clear reasons for opposing the construc-
2 tion of men with spinal cord injury through deficient and pathologising
3111 views of impairment. It undermines the analysis of what happened to
4 David agreed upon at his inquest and exposes strong reasons for criti-
5 cising the medicalised discourses of disability which shot through every
6 aspect of his life and death – including the final inquest and the philoso-
7 phies, policies and practices of the organisations and agencies meant to
8 be supporting him. It illustrates that David chose not to be a disabled
9 person. He was willing to live with impairment but he was wholly resis-
20111 tant to living with disablement.
A literary criticism of Frank – Peter Clough
4 I have already outlined (in Chapter 6) how I wanted to use Frank – to
5 open up three themes of ‘method’: (1) Is Frank a story?, (2) the commis-
6 sion, (3) the conclusion. Each of those themes is briefly considered in
7 terms of the literal, the construction and the derivation. I have also previ-
8 ously identified four substantive issues from Frank: (1) the father, (2)
9 religion, (3) sexuality, (4) roots, in relation to the literal, the construc-
30111 tional and the derivational factors of the three themes. In this section I
1 want further to ‘unpack’ the creation of Frank in order to lay bare the
2 structures that might be used to analyse the fiction which is Frank. This
3 section is also structured around the literal, the construction, and the
4 derivation and provides a more comprehensive consideration of the themes
5 of ‘method’ and of ‘issue’ which have already been briefly introduced in
6 Chapter 6.
Analytical contexts of Frank
40111 In this section I discuss the contexts of Frank – both the literal story and
1 the parallel text to be found in the construction of the narrative which
2 is Frank. There is some small repetition here because the brief introduc-
3 tions to these ideas in Chapter 6 cannot be excluded from this fuller
44111 analysis. There are seven themes in this section:
142 Findings

1111 1. Is Frank a story?

2 2. The commission
3 3. The father
4 4. Religion
5 5. Sexuality
6 6. Roots
7 7. The conclusion.
9 Each of the above themes is discussed under three headings: the literal
1011 (what appears in the story); the construction (the devices used to locate
1 it in the story); the derivation (the events, experiences and thoughts which
2 might have lead to this element being here).
5 (1) Is Frank a story?
7 The literal
The Frank narrative is basically an edited version of diary entries. In them-
selves they ‘tell’ a particular story of the heritage of one man. It is, in its
whole, an uneventful story, but, as ‘Frank’ tells it, the story of his child-
hood, his father, his religious upbringing, ‘out-of-place’ geographical
location – all account for his later-life difficulties. (At least I think this is
what he is trying to say; though he never, actually, gets around to it.)
6 The construction
8 I have chosen here to let the diary entries speak for themselves. This
9 becomes evident, first of all, when ‘ Frank’ declares his pseudonym at the
30111 outset of the narrative account.
2 The derivation
4 The diaries that make up the story came from elsewhere, a Creative
5 Writing course that I attended a couple of years after I met ‘Frank’ – we
6 were encouraged to keep our own diaries, to record our thoughts –
7 anything – unedited. I have never kept a diary, as such, but I have always
8 kept a notebook (often several). And so, this use of diary entries – written
9 and read, at random, from ‘Frank’s’ diaries – are a device from my own
40111 method of reflection and recording. I write things down. I don’t always
1 know that what I write is important – much less if it’s important – but
2 I do know the usefulness – indeed, the necessity – of ‘writing something
3 down’. I never write things for an audience – never ‘do’ anything with
44111 much of my personal writing – but I do write.
Findings 143

1111 (2) The commission

3 The literal
4 Much of his diary was turgid – dry – yet these pieces – those that made
5 me read on . . . they said something – might speak?
6 ‘I must go soon’ – I said. How could I tell him that I couldn’t (wouldn’t?)
7 write his story?
8 ‘You’ll write it? Do something with it? Interview me? Let me see a
9 draft?’ He was keen, disgustingly keen.
2 The derivation
3111 This narrative is derived from edited diary jottings which ‘Frank’ felt were
4 important enough to ‘do something with’. He had read one of my published
5 stories – knew (I think) the character from which Rob was derived (see
6 Clough, 2002). I still have a sneaky feeling that, although the story of
7 Rob was terrible, ‘Frank’ was in awe of the fact that Rob’s story was
8 made public – in a book, reviewed, used on courses (apparently a student
9 in his last school quoted it).
2 The construction
3 My own reluctance to keep diaries, my own understanding of the use of
4 personal writing and my diffidence around ‘doing something’ with ‘Frank’s’
5 diaries come together here. I write personal notes – but they are just that
6 – and this notion that I should ‘do something’ with some others’ diaries
7 is somewhat absurd. I have chosen here to build into ‘Frank’s’ desire to
8 ‘be published’ the idea that he thinks he knows who ‘Rob’ might be. I
9 am implanting here a sense that ‘Frank’ is seeking some kind of fame (or
30111 at least affirmation of his life) through the publication of his story. Perhaps
1 ‘Frank’ thought he knew who ‘Rob’ was . . .
4 (3) The father
The literal
7 2nd November
8 I am seven, eight and on this light summer’s night I can’t sleep; maybe
9 I have been down two or three times already but I am not prepared for
40111 what happens. My father is there; he is dirty from work; in a rage he
1 seizes me – this is the word I always use – he seizes me and all of one
2 action pulls my pyjama trousers to the ground/has his belt off from his
3 waist/pushes me face down onto the table/lashes my bottom with his
44111 leather belt.
144 Findings

1111 My brother says my father put him to bed one night as my mother
2 worked and Colin remembers this: violation, my father tearing off Colin’s
3 clothes and Colin’s shame at standing naked before him; the impropriety
4 of it all; rough hands pushing
5 My other brother – my older brother – says he has no memories like
6 these.
The derivation
1011 This – I think – comes from a multiple and complex memory of boyhood;
1 it reflects my own indignity at the hands of my father and my perpetual
2 feeling of indignity. Whether or not I (or my brothers) were stripped
3 and flogged – or (what could you call it?) abused, pulled on, however
4 brought down to our naked vulnerable selves, whether or not this happened
5 – is not the point. The point here is that young boys can feel stripped
6 and penetrated at the hands of their fathers (if those fathers do not
7 know how to be fathers to their sons)*. Elsewhere in the story it is made
8 clear that the mother is not a part of this degradation of my boyhood
9 man.
The construction
3 I have put together here a series of ‘hunches’ about the father in relation
4 to his sons, alongside other hunches as to why the father brings out his
5 sexual frustration on the boys. He misses those desert nights. His wants
6 those gentle pullings in the desert tent. He is ashamed of the ‘desert-love’
7 (the Methodists made certain of this).
30111 (4) Religion
2 The literal
3 18th September
4 I was bound by so many rules; it seemed it was all rules. There were the
5 rules of my damaged family, which of course were not so visible; the
6 rules of the neighbours which my mother feared and whispered about;
7 the rules of the fucking methodist church, and of school. The whole thing,
8 the central principle, was containment, no growth, conservatism . . .
9 I’ve thought hard about this, and I think the whole thing . . .
44111 *I write a story on this theme also (see Clough, 1995).
Findings 145

1111 The derivation

2 The roots of this are in childhood experiences of organised religion (my
3 own and those borrowed from others) that oppress and confine. They
4 are experiences where the ‘organisation’ and ‘routinisation’ of religion are
5 divorced from any experience of faith, or Christian love, or forgiving
6 communion. Hence: fear, whispering, rules, containment.
9 The construction
1011 This has nothing to do with faith. I think I understand ‘faith’. What makes
1 things difficult in ‘Frank’s’ heritage is ‘Religion’ – and, more importantly,
2 denomination. Methodism (with the capital ‘M’ of the time) was at the
3111 root of ‘Frank’s’ fathers readjustment. He has – in the desert – (perhaps)
4 found pleasures which did not fit with his own ‘roots’./This only mattered
5 because it mattered to ‘Frank’ – and I only knew that when I read his
6 last entry –
8 3rd January
9 I don’t know why I never – really – loved other men.
1 Perhaps this is what ‘Frank’s’ story is about.
2 Perhaps this is the motivation for the telling.
3 Perhaps Frank is a different story after all – which, had I interviewed
4 him, would have been told . . .
7 (5) Sexuality
The literal
30111 13th December
1 When he told me a few years ago that he was a nudist, what he said
2 was:
3 ‘I’ve a private yard here at the back I can strip off in summer’ and
4 later: ‘o yes we used to strip off in the desert’ and ‘I spent the best part
5 of four years bollock-naked in the desert’ and later: ‘I go to Gresham
6 you know, a sun-club in the baths there’. He was sixty-eight when he
7 told me this.
The derivation
1 In suggesting that The desert love left no mark, I am suggesting that this
2 man (I can hardly bear to use that word and think of him) remained
3 unchanged by the desert nakedness and any male encounters that might
44111 have happened. But there is no suggestion of a ‘relationship’ here – in
146 Findings

1111 that tent, any cock would do: This is a six-man tent but he shares it only
2 with Bill; or Trevor. And to lie warm next to another body and – often
3 gently, tenderly – to hold each other’s penis, to pull gently . . . And the
4 next day and the next day and all the nights are the same: Trevor, Ralph,
5 Harry. O this is life. And if there is jealousy; and if a sergeant demands,
6 and is rough and hurts, then this too is life, life far from all things mean.
The construction
1011 What is being built here – through a series of entries – is a story in the
1 story. The reader will find the various threads which point to male–male
2 sexual experiences (they would not have been called ‘gay’ then); and the
3 shame due to the fact that they happened is shot through his subsequent
4 life – with his wife and his boys – when he returns. The story of his sexu-
5 ality – the disgust at his old-man’s nudity, and the roughness with his
6 sons – comes together in the explanation that he found something in the
7 desert that both excited and repulsed him.
(6) Roots
The literal
3 7th May
4 St. Annes-on-Sea is nowhere to live a life. A man should rage and be foul
5 there; a man should spoil it and foul it. It has no future and no past.
7 So here I was born into a town with no future and no past. It was birth into
8 the day-care room of an old people’s home; an affluent day-care room
9 maybe, but beneath the deodorant spray and the daffodils the smells are the
30111 same: old flesh, old gums. (Or: birth into a perpetual January on one of those
1 retirement coasts of Spain; or – this is worse – born on a perpetual cruise.)
3 12th May
4 My family should never have strayed into this place; they were the decent
5 poor, and in neither respect should they have been housed here. St Annes
6 should have been better policed at the boundaries, and they should have
7 turned him back up the road to Blackpool or Preston.
9 14th May
40111 I never heard my cousins or other relatives referred to but they were
1 bloody this or they were bloody that bloody weedy Earnest – my mother’s
2 loved brother – that bloody oily Jimmy; your mother’s bloody lot in
3 Wakefield or my mother’s bloody lot in Blackpool; Ernest-bloody-know-
44111 all; what’s-her-name, that do-bloody-gooder in Clayton?
Findings 147

1111 But he laid waste around him; already cut off, he cut off and cut off.
2 The neighbours were bloody know-all bloody Jenkins, Harry bloody
3 Rowlay; that smart bugger Sanderson, that bloody weed De Freitas. The
4 men he worked with were Buckethead or Little Zem; or, at best, bloody
5 Ken or plain Barker. And they were too clever by bloody half; or else
6 bloody idle or messy buggers
The derivation
1011 This all works around the words in the last entry here But he laid waste
1 around him; already cut off, he cut off and cut off. The entries about
2 family and roots are edited so that they eventually explain that every-
3111 thing he did was – effectively – ‘cutting-off’. The fact is – I think – that
4 ‘Frank’s’ father had to despise everyone – because – really – he despised
5 himself. He ‘cut off’ because he was cut off – hated everyone because he
6 carried (from the desert) a loathing and a frustration.
The construction
20111 The entries about the ‘roots’ mainly report the facts – along with ‘Frank’s’
1 thoughts about ‘going back’ and Frank’s seeking a reason for the misplaced
2 family. I think there is a point here when ‘Frank’ is – himself – misplaced,
3 and these entries are, in a sense, a working through of his own ‘place’.
(7) The conclusion
The literal
9 (i) ‘Frank’s’ conclusion
30111 But you have to understand that my father was so damaged too. His
1 father – the story goes – was a ne’er do well; and gassed in the war; and
2 seldom worked, maybe even drank. And his mother worked severely. I
3 suppose you have to understand that, to understand anything of the rest.
5 3rd January
6 I don’t know why I never – really – loved other men.
8 (ii) ‘My’ conclusion
9 ‘You’ll write it? Do something with it? Interview me? Let me see a draft?’
40111 He was keen, disgustingly keen.
1 He insisted that I took the diaries with me when I refused the fourth
2 pint. Inside the cover of the first he wrote his phone number.
3 I phoned him a few weeks later – said I couldn’t make the diaries into
44111 a story.
148 Findings

1111 I told him they might speak for themselves – but that they needed ruth-
2 less editing.
3 ‘Do it,’ he said.
4 I had not warmed to him.
The derivation
8 Two conclusions come together in my idea that this is ‘Frank’ seeking his
9 own therapy. He is appealing to the present age of therapeutic self-healing.
1011 You have to understand. . . . This comes from a suggestion that there has
1 to be some reason why we are like we are. There has to be a reason why
2 ‘Frank’ is like he is. In this story, my reason for ‘Frank’ being as he is –
3 finished – is partly explained (or at least constructed) by my dislike of
4 him. I don’t want to write his story. I want to tell him that there are
5 many more interesting stories to write.
The construction
9 The piece finishes with the two conclusions because I wanted to convey here
20111 both ‘Frank’s’ desperation to have his story ‘told’ and my reluctance to
1 accept his commission. Perhaps he should have offered to pay me – yet, I
2 think, his attempt to buy me is conveyed suitably through the constant flow
3 of beer – which I refuse. Clearly there was a narrative of some kind to be
4 told – but I was not prepared to take the raw data of the diaries and create
5 a story. That, I think, is what Frank would have wanted. So, in a sense,
6 Frank gets his story published – but not as he had planned. Not the one
7 he would have bought. I had not warmed to him. And so the story is
8 constructed so as to detach ‘my’ ‘voice’ from his.
9 The preceding analysis is a sort of ‘deconstruction’ of Frank. It lays
30111 bare the means by which it was created and the influences which led me
1 to write it as I did. There are works of fiction in this account too. For
2 as the writing of Frank created the story, so does the discussion of an
3 analysis of Frank lead to new stories.
7 We have come some way from the life stories presented to you in Part 1
8 of the book. We have attempted to supplement these narratives with
9 analyses that demonstrate the telling nature of stories. Indeed, perhaps
40111 this is the main offering of the social researcher – to read stories, to illu-
1 minate them and to demonstrate the analytical content within them. But
2 this analytical ‘need’ of social research is not without dilemmas (or ironies).
3 It is to these concerns that we next turn.
Chapter 10
Reflections on analyses
5 The role of analysis in life story research has been questioned. If, as
6 Thomas and Znaniecki (1958) argue, stories constitute the perfect socio-
7 logical material, then why the need to analyse? Whittemore, Langness and
8 Koegel (1986) and Booth and Booth (1994) debate whether or not
9 analysing actually works against the key aims of storytelling; to bring the
20111 disappearing individual back into social theory. For too long, they muse,
1 social theory has created structuralist versions of the world that hold no
2 place for the subjective realities of social members. In contrast, good
3 stories provide vivid individual accounts of personal experience that implic-
4 itly disclose underlying socio-structural relations (Bertaux, 1981). To
5 analyse stories takes away ownership of the primary narrators and masks
6 the qualities of a narrative with the abstract interpretations of the theo-
7 rist. The best stories are those which stir people’s minds, hearts and souls,
8 and by doing so give them new insights into themselves, their problems
9 and their human condition (Mitroff and Kilman 1978, p. 83).
30111 While we accept that storytelling can do all of these things – without
1 the analytical skills of the researcher – we also recognise that researchers
2 have a responsibility to take further what stories might tell or tacitly
3 acknowledge. The role of analysis is crucial particularly in postmodern
4 times where the author has died. Caught up in a hermeneutic whirpool
5 (Toone, 1997), readers may access a host of meanings in making their
6 interpretations. We feel uncomfortable, therefore, in leaving our stories
7 open to a relativistic audience, who can do with the stories what they
8 want. Analysis aims to offer a helping hand in guiding readers to the
9 theoretical significances of a narrative. As one of us has said elsewhere
40111 (Goodley, 2000, p. 58):
2 The emic [‘insider’] view of the narrator and the analytical and report-
3 orial skills of the researcher are combined to draw out broader socio-
44111 structural, cultural, political and theoretical points . . . Drawing out
150 Reflexivity

1111 points of convergence in a number of stories shows the relevance of a

2 few accounts to many similar others . . . Stories cannot stand alone.
4 Simultaneously, we also feel uncomfortable with the analyses we have
5 made. We have come to really own our life stories (often with others who
6 have shares in them) – and no one likes their baby to be prodded and
7 poked by an over-analytical hand. Therefore, in the spirit of reflexivity,
8 this chapter exposes some of the misgivings we have with analysis and
9 what has been done to our life stories.
Critical reflections on discourse analysis –
Dan Goodley
Deconstructing Gerry
6 I experience mixed feelings when reading Chapters 9 and 10. In one way,
7 the analyses take Gerry further – into the adult world of theorising and
8 philosophising – where his story is taken seriously for what it can offer
9 (albeit in some small way) to the postmodern and ‘learning difficulties’
20111 literature. In another way, I am reminded of the 1997 Woody Allen movie
1 Deconstructing Harry, where one of the characters (played by Robin
2 Williams) has become temporarily hazy to the eye. He exists as a fuzzy
3 character, a worrying ghostly apparition to friends and family, in search
4 of some kind of cure from his psychotherapist. Just as Gerry – originally
5 the embodied, clearly defined hero of the tale – is now rendered foggy
6 by the analysis of a poststructuralist discourse. I started off the story
7 wanting to present a man so extraordinarily ordinary: extraordinary
8 because so many of his peers had succumbed to the disabling artefacts of
9 the segregated institutions they occupied. The human essence had been
30111 lost in the discursive mire. Gerry’s extraordinary ordinariness becomes
1 lost in the discourse analysis.
The death of the subject and the end of stories
5 In a piece sympathetic to postmodernity, Hughes and Paterson (1997) con-
6 clude that poststructuralism replaces one form of structuralism with
7 another: where once neo-Marxists rendered human beings the ensemble of
8 material conditions, poststructuralists depict their humans as merely the
9 objects and subjects of discourse. Fundamentally, such an approach casts a
40111 weary, cynical eye over the phenomenological aims of qualitative
1 researchers who hold misplaced realist and humanistic views. The spectre
2 of Foucault reigns supreme: you know that person you want to relate to?
3 Whose story you want to tell? Well, they are a myth. ‘People’ – like ‘sci-
44111 ence’, ‘love’, ‘care’, ‘emotionality’ – and don’t quotation marks get a lot of
Reflexivity 151

1111 hammer in this postmodern world – are just products of (post)modernity.

2 We are not the closed, embodied individuals we like to think we are.
3 Instead, we are fragmented entities with fractured identities. Schizophrenic
4 by nature, contradictory by design and consumerist in the final analysis.
5 The postmodern/poststructuralist subject is at best an ensemble of available
6 resources, at worse a mere object of discursive practices. Indeed, Gerry and
7 his peers are no longer characters with agency, choice and ambitions –
8 which people all have no matter how hard life gets – they are simply objects
9 of sophisticated knowledge systems best seen in institutional settings. The
1011 postmodern narrator/analyst does away with the characters within the nar-
1 rative and renders them mere objects and subjects in a discursive tale
2 belonging to the researcher. So much for the emancipatory potential of
3111 story telling.
4 Discourse analysis deconstructs a narrative’s characters, obliterates the
5 plot and does away with the moral of the tale. This form of analysis
6 would seem to be opposite in character to life story research. As the story
7 crumbles, so we are left with sedimentary, witless, artless discourses.
8 Perhaps we have some element of the plot, but gone are our characters.
9 Perhaps we have some form, but little content. But are these the misgiv-
20111 ings of an unreconstructed realist? Of someone who still wants to see his
1 data intact? Or are they the doubts of a researcher committed to the very
2 real people with whom he is involved? Who feels that analysis has done
3 away with the people he is so close to?
Poststructuralism and life stories as real artefacts
of society
8 Poststructuralism is not about embracing a Blairite ‘third way’ of theo-
9 rising some elusive middle ground between structure and agency, or
30111 subverting the real and replacing it with spin. Instead, just as Mitchell
1 (1974) suggested that Freudian psychoanalysis was a description not a
2 prescription of gendered identity development in Victorian families, and
3 if we take Marx’s (1845) thesis that human essence is the ensemble of
4 social relations, then poststructuralism can be viewed as a methodology
5 that is in tune with the contemporary knowledge societies of late capit-
6 alism. Similarly, life stories reaffirm that which we have left – our stories,
7 our constructions and our constructions of others. Life story research
8 reaches into the heart of the postmodern condition and pulls out the only
9 real thing we have left: our narratives. When we accept this then we can
40111 move on – towards a place of emancipation. Armed with the knowledge
1 of the storied nature of the world, we become streetwise and in tune with
2 the bogus or kosher stories that we are told. When Gerry tells of his
3 peers’ oppression, we feel its truth, we know he is talking about real
44111 things. Stories are there to be grabbed, to be told aloud, to be shared and
152 Reflexivity

1111 – crucially – to be acted upon. Indeed, the People First movement that
2 Gerry is part of has often been ridiculed by other political organisations
3 for ‘only telling stories’. In contrast, storytelling has been an essential
4 part of adding to counter-hegemonic understandings of disability and
5 learning difficulties. Yes, they are socially constructed – yes, people
6 with learning difficulties are written onto, so that they are made incap-
7 able of enacting the most basic of human rights – yes, these stories of
8 oppression are real and so are the stories of resistance.
The real is dead, long live the real
2 Is poststructuralism real? Does it do a disservice to the real experiences
3 of real people? Perhaps discourse is more real than real. One of the myths
4 of modernity as that we attach such significance to the real, present world.
5 Stories do not do this. They take us to places – often from the past but
6 also from the present – that are both familiar and alien. Whether or not
7 they are real is the wrong question to ask. Modernity’s obsession with
8 the real has finally given rise to an interest in belief and knowledge which
9 can be hopeful and useful:
1 Marxism must be read in its spectrality: that its particular modernist
2 project is more alive (and more necessary to keep alive) as a spectre
3 than it was as a living and somewhat disgracefully embodied dogma
4 (Derrida, 1994, Stronach and Maclure, 1997, p. 26), the spectre of
5 the communist manifesto; what manifests itself in the first place is
6 a spectre, this first paternal character, as powerful as it is unreal, a
7 hallucination or simulacrum that is virtually more actual than what
8 is so blithely called a living presence.
9 (Brown and Jones, 2002, p. 97)
1 Gerry O’Toole is as real as real can be in this postmodern age. All we
2 can do is add to his realness by pointing out the possible knowledges at
3 play. We need to ask, therefore, whether or not Chapter 9 adds to the
4 understandings of the truths that Gerry tells us in Chapter 1. I would
5 suggest that if we keep with a storied vision of the world, then post-
6 structuralism and discourse analysis can neatly slide into this view. They
7 should complement and enhance the discursive qualities of a tale. They
8 must supplement the analyses already being made in the life story. As
9 Daniel Bertaux (1981) points out, all stories are imbued with the nature
40111 of the world in which they took place or in which they are told. Behind
1 every individual story is a socio-historical and political landscape. While
2 stories start with individuals and end with the landscape, analysis finishes
3 up the landscape and reminds us of individual stories that exist, often
44111 against the odds.
Reflexivity 153

1111 Critical reflections on voice relational analyses –

2 Rebecca Lawthom
The voice relational approach provides a rich and detailed analytical
reading of a narrative. Working within one narrative, but using several
very different readings, highlights both the depth of the story-giver’s expe-
rience and the richness of using diverse interpretations. Tracing the story
per se it is not surprising to find a classic linear tale, but reading one’s
own responses into this highlights how my own theoretical focus impacts
upon the collaborative analyses.
2 The many voices of voice relational analysis
4 Feminism blends both the personal and the political, and it is precisely
5 this juxtaposition which is writ large in both Colleen’s account and my
6 reading and engagement with it. However, I am sure that a developmental
7 trajectory, based on early care-giving experiences and schemas regarding
8 self-esteem, could be provided by an interviewer/co-researcher with a devel-
9 opmental theoretical background. However, the other three readings (for
20111 ‘I’, for relationships and for social structures) position the narrative and
1 the story-giver firmly as enmeshed in other arenas (psycho-social, histor-
2 ical and cultural). Insider perspectives have been well explored within the
3 feminist literature (e.g. Wilkinson and Kitzinger, 1996). The voice rela-
4 tional approach not only privileges voice but can potentially destabilise
5 the researcher’s authority. The notion that research can ever ‘give voice’
6 is contested by critics who argue that participants are positioned as ‘ silent
7 victims’. Burr (1995) has renamed the concept of the voice relational
8 method as the opening up of linguistic dialogues, which acknowledge
9 agency and resistance prior to researcher intervention. In its purest form,
30111 proponents of voice relational methodology suggest that analysis be done
1 with groups rather than individuals (as might occur with other qualita-
2 tive approaches). This analysis undertaken by the group is not about
3 verifying or agreeing on what is seen but is another way of allowing alter-
4 native voices to consider the narrative. Doing the analysis using this process
5 allows the shaping of the story to be discussed and contested. Critics may
6 argue that interpretation in this way simply adds other voices (often priv-
7 ileged academic ones) to the fray. Yet, as Ochs and Capps (2001, p. 25)
8 point out (using Bakhtin),
40111 the influence of others’ ideas on the shape of the narrative is invisible.
1 Taking the logic of revoicing to the extreme, every word, expression,
2 and genre, we employ in a narrative has been co-authored in the sense
3 that they have been developed and used by others before us.
154 Reflexivity

1111 The transparency with which voice relational methodology is undertaken

2 helps to demystify the analytical process. Non-dominant groups, who are
3 often the passive recipients or at best participants of research, often claim
4 that analysis appears as a mystical process, and removes voice (the self)
5 from the tale (Langness and Levine, 1986).
Easy analyses? Or collaborative analyses?
9 For Colleen’s analysis, working towards an emancipatory approach, we
1011 analysed the narrative together. This process was interesting, as analysts
1 occupied different understandings, frameworks and ownership of the data.
2 Bird (1999) talks of distributed competence (in classroom settings) where
3 learning occurs across diverse understandings. This concept might be of use
4 here. I come from the academic, intellectual world, whilst Colleen is
5 immersed in the activity of everyday settings – how might these differences
6 unfurl? In Larson’s (1997) work, both women are feminists and academics
7 and still find huge differences in their approaches to and understanding of
8 the narrative. I have touched upon the idea of alternative frameworks ear-
9 lier, under the banner of feminism. While I am clearly a feminist (self-
20111 labelled as such), Colleen is more cautious about using the label (as in
1 Griffin, 1989). Our understandings of how data work and are worked upon
2 are vastly different. We embarked upon the analysis together after I had
3 shown Colleen brief summaries of the readings (and how they were to be
4 done). Clearly, here I am imposing an intellectual structure on the analy-
5 sis, but the approach does allow for negotiation and accommodation. The
6 first reading was easy and Colleen (ever mindful that a tale needed to be
7 told) quickly discerned the plot and characters. The sub-plot about differ-
8 ence was suggested by me, but Colleen agreed, searched and found the
9 relevant examples. For the second reading, the process of using coloured
30111 pens easily identified where ‘I’ shifted to ‘you’ or ‘we’. Colleen first
1 wondered whether this shift was a product of dialect, but after looking at
2 the shifts could see a pattern of hidden ‘others’ – the generic ‘you’. For the
3 third reading, Colleen was surprised at how many relationships she had
4 mentioned (and how many had been left out). She felt the story already
5 had complexity and did not want to add more people. An interesting (and
6 emancipatory) reflection upon her tale was the way in which interaction
7 with others had been key (throughout her life). Whether these relationships
8 were born out of respect (the convent school), embarrassment (mixed
9 workplaces), reluctance (dating), confidence (parenting), lack of confidence
40111 (charity work) or finally realisation of esteem (new partner, new work-
1 place), the key driver here was relatedness. Colleen could see and reflect
2 upon how good she was at relating and the pride this brought.
3 For the last reading, the gap between academia and everyday life became
44111 apparent. The placing of people in social contexts, reading institutions,
Reflexivity 155

1111 ideologies and discourses as influences, is a process learnt in many social

2 science degree studies. Colleen focused on immediate and local influences,
3 which were particular to her. We talked about the continuity of gender
4 roles (women she worked with taking the lion’s share of domestic tasks)
5 and the rich patterning of this across class and area. Colleen could grasp
6 this commonality with ease and found examples (the church, heterosexual
7 pressure) without needing academic jargon! What is interesting about voice
8 relational analysis is its accessibility – informants/storytellers can both see
9 how it works and participate fully within it. Unlike some other processes
1011 (e.g. discourse analysis or poststructuralist readings) where the analysis
1 has to be undertaken by the theorist, here the analysis is collaborative.
2 Hence, the knowing is constructed by the researched and the researcher.
3111 Colleen was surprised at the apparent simplicity of the analysis and thought
4 that ‘science was just for experts’. Kagan (2002) talks of a liberated
5 psychology being able to work with people, making psychological infor-
6 mation and insights freely available. Emancipatory approaches should be
7 about accessibility and inclusion. Colleen as the narrator and co-researcher
8 was fully included in this process.
The dominance of some voice(s)
2 Criticisms of this approach originate from different epistemological stances
3 – the notion of ‘voice’ or self is problematic within postmodern discus-
4 sion of discursively constructed or fragmented selves (e.g. Butler, 1990).
5 Mauthner and Doucet (1997), to counter this, suggest using Plummer’s
6 notion of listening to stories:
8 somewhere, behind all this storytelling there are real, active, embodied,
9 impassioned lives. Is this a process of peeling back stories to reveal
30111 better and better ones? And if so, when do we know a story is better?
1 (Plummer, 1995, p. 170)
3 Another criticism may be the way in which reflexivity is used in the
4 analysis. Whilst it is possible to explain the context and the assumptions
5 on which interpretations are made, it is not possible to neutralise the
6 social nature of the interpretation. It is plausible that researchers’ views
7 and theoretical frameworks may overwhelm the voices and perspectives
8 of the researched. It is also plausible that data analysis itself could
9 be disempowering. As researchers, we can dissect, cut up, distil meaning
40111 and portray readings in particular ways. Are we taking voice, agency and
1 ownership further away? Good research (in an ethical and collaborative
2 sense) involves negotiating these concerns and allowing collaboration and
3 participation to shape the project. Questions remain, however, over whose
44111 voice dominated the analyses of Colleen’s story.
156 Reflexivity

1111 Critical reflections on grounded theory –

2 Michele Moore
3 How do I feel about the analysis? The difficulties surrounding an analysis
4 of David’s story are familiar to qualitative researchers. Hollway and
Jefferson (2000) discuss the difficulties in making a distinction between
description and theoretical interpretation in qualitative research analysis
that has clearly beleaguered the attempt at analysis presented in Chapter
9. In addition, breaking the story down to produce an analytic structure
has necessarily led to fragmentation. But arguably, without the attempt
to produce some kind of analysis, there is no clearly articulated starting
point for a juxtaposition of interpretations on what happened to David.
So perhaps some analysis is better than no analysis. Nevertheless I suffer
now from what Lofland and Lofland (1984) called ‘ethical hangover’ –
feelings of guilt and betrayal which, according to Homan (1991), are
common for social researchers.
7 I am appalled at the analysis and its reduction of David’s experience,
8 though I do not attribute this specifically to the decision to take a grounded
9 theory approach. Obviously any analysis is reductive and the confines of a
20111 grounded theory approach do the story a routine – but probably not espe-
1 cial – disservice. Going back a stage, I am appalled at the story from whence
2 the analysis came, because it reduced David’s experience to bones in the
3 first place – both literally and metaphorically. The analysis is upsetting
4 because it patently shows the needlessness of David’s death. Producing the
5 analysis involved a stark look back at the futility of what happened to him.
6 The analysis will make no difference to David. I am ashamed of it having
7 been so long in the making – in the meantime other people have died in
8 comparable circumstances. I am apprehensive about David’s surviving
9 family members knowing or not knowing about it and embarrassed about
30111 the interpretations and judgements that will be made about my construc-
1 tion of the data. I am long past worrying about the likely criticism that the
2 analysis might not be ‘proper’ grounded theory; it is eclectic, it is messy,
3 but importantly it does prompt evaluation of David’s experience from some
4 previously suppressed angles. I only hope there is no lingering sense that
5 the analysis in any way seeks to be ‘objective’ or ‘reliable’.
6 The hangover is very painful. It is unnerving to know that producing
7 an ‘analysis’ has obscured David’s voice and would quite probably perse-
8 cute him if he knew about it. It hasn’t been possible to prioritise David’s
9 preoccupations in the analysis; these have had to be presumed and fused
40111 with my own. If he had his own agenda for the telling of his story, it is
1 far from foregrounded now. Making the analysis has at times been stressful
2 because it has involved returning to the most extreme and disrespectful
3 arenas of the disabling society in which we live, stating what has always
44111 seemed to me to be obvious about the menace of disabling barriers and
Reflexivity 157

1111 recognising that for many – probably most – disabled people and their
2 families the social model of disability is still unknown. Making the analysis
3 has involved raking over the pain of my relationship with David (Moore
4 and Skelton, 2000), wondering if I let him down, missing him, wanting
5 to explain, owning the fact that my involvement led to no positive outcome.
6 Any value to the analysis lies in its powers of strategic persuasion. My
7 personal goal for the analysis was that it should persuade the reader that
8 if service providers had been willing to shift the focus of their interven-
9 tions towards social barriers and away from an insistent focus on ‘what
1011 was wrong’ with David, then the outcomes might well have been different.
1 I am happy for the jury to be out on whether this proposition is accept-
2 able, but I do not want there to be any ambiguity about my own feeling
3111 about the data. I purposely intended to guide the reader’s interpretations.
4 Herein lies the potential for misuses and abuses of analysis. I have not
5 shied away from its overtly political nature – the theory may be grounded
6 but the grounding has been a highly selective and deliberate process. This
7 leads to one of the chief drawbacks of grounded theory analysis, namely
8 that it can blinker the analyst and lead to an interpretation of evidence
9 entirely within the confines of the selected theory; it can shut down the
20111 possibility of noticing other possible theoretical directions.
1 I chose to ground the analysis in the social model of disability and the
2 material can be fitted within this theoretical agenda. But arguably it could
3 equally be fitted to other theoretical frameworks and the social model of
4 disability focus has meant that the analysis ignores other theoretical propo-
5 sitions (Corker, 1997; Corker and Shakespeare, 2002). There are aspects
6 of David’s experience for which the social model of disability does not
7 account. It does not provide for examination of multiple aspects of David’s
8 identity, for example, and does not get to the heart of what was going
9 on in his mind. It does provide a simple way to make sense of some of
30111 the key determinants of his experience that transcends his personal struggle
1 and calls others to account. For the purposes of this publication this
2 has been deemed adequate, but it is not a ‘complete’ analysis. There are
3 competing theoretical agendas which, had these been built into the
4 grounded theory analysis, would have shed a different light on the data.
5 Moreover, however the analysis is interrogated, there is no getting away
6 from the fact that it has made no difference. The power of any analysis
7 is determined by the extent to which it gets noticed by relevant – and
8 multiple – audiences. I have had the courage to take only small steps to
9 reach relevant audiences, for example, mentioning David’s story in profes-
40111 sional and academic publications. Fear of personal consequences and
1 repercussions for his family has swayed me away from disseminating the
2 story or its analysis widely. Holding back analyses is not always easy; it
3 was, for example, very tempting to respond to misleading newspaper
44111 coverage of David’s death with my own account, but this would have
158 Reflexivity

1111 afforded a platform for those already sending letters of condemnation to

2 the family, and could have jeopardised future relations between the family
3 and key providers, and Sheila’s overriding concern was for family privacy.
4 Nowadays the heat may have declined for some of the more harrowing
5 aspects of both story and analysis, but realistically the delay has dimin-
6 ished the potency of the critique. It is difficult to know how to open the
7 gateways that will ensure that analysis gets communicated to relevant
8 audiences in ways which are not damaging to informants, but finding
9 ways of pushing analysis through critical gateways is vital if research is
1011 to affect positive social change. Ideally an ‘in process’ surfacing of issues
1 with a wide group of people involved in the research promotes interest
2 in engaging with analysis and dissemination (Dunn, 2004), but this presup-
3 poses that those in situ know and accept that research is going on in the
4 first place, whereas in this life story project this was never so.
5 Strong possibilities for making alternative meanings can come from
6 analysis of life stories. This reminds researchers of the importance of
7 enhancing the relationship between the academic world in which those
8 stories originate and the actuality of everyday lives lived by the people
9 whose stories are told. It is vital that we improve this relationship in order
20111 to best advance an agenda for social justice. Analysis that is confined to
1 university library shelves or esoteric journals makes little difference to
2 many social service providers and doesn’t assist ordinary families. If we
3 genuinely seek to transform understanding of disability (or any other social
4 issue) through life story research, then it is vital to examine the relation-
5 ship between the actuality of people’s lives and the academic production,
6 analysis and dissemination of stories about those lives.
Critical reflections on literary analysis –
Peter Clough
1 In this section the character ‘Frank’ is the organising structure. I begin
2 with a résumé of two important influences on the story. There are two
3 influences behind my construction of this story in this form. First, I have
4 had to deal with the notion of ‘the commission’ from people who really
5 want me to tell their story – usually because it is terrible and they want
6 it ‘out’ but don’t want to be identified – and so feel they cannot tell it
7 themselves. It’s hard to deal with these ‘commissions’ for they often come
8 from people I like – love even – and so I have to find ways of avoiding
9 the task. I can’t simply write stories that others want me to write. (Well,
40111 I can – any writer can – but that is not what the use of narrative is for
1 me at least.)
2 The second influence on the construction of Frank as it is here is Yann
3 Martel’s Life of Pi; in his preface to the book the author argues that the
44111 power of story and the novel leaves the reader with two versions of the
Reflexivity 159

1111 story and the question as to which one they prefer. Two stories, two
2 endings – the choice is the reader’s. But Frank can be considered as part
3 of a much broader picture, and the important task here is not simply to
4 subject Frank (or any other story for that matter) to critical literary analysis
5 but to argue the importance of literary analysis and the functions of
6 language in the creation of objects and meanings. I have written of this
7 elsewhere, and the remainder of this section consists of an extract which
8 sets out my thinking in relation to these topics (for a fuller account see
9 Clough, 2002, pp. 76–77).
1011 A major aim here is to argue for a view of fictional writing not as
1 ‘alternative’ (or even particularly new), but rather as issuing from the
2 same radical concerns and processes as those of other social scientists. As
3111 Postman puts this,
5 Both a social scientist and a novelist give unique interpretations to a
6 set of human events and support their interpretations with examples
7 in various forms. Their interpretations cannot be proved or disproved,
8 but will draw their appeal from the power of their language, the depth
9 of their explanations, the relevance of their examples, and the credi-
20111 bility of their themes. And all this has, in both cases, an identifiable
1 moral purpose.
2 (Postman, 1992, p. 154)
4 Of course, we shall not in the end arrive at an account of truth-in-fiction
5 which will meet the orthodox criteria of a social science. Such an account
6 would be absurd, much as we might rigorously argue the existence of
7 God. (In both cases, surely the question of existence is already answered,
8 and the question is rather how this exists than whether?) It remains,
9 however, in the examined world in which we live – where evidence
30111 genuinely matters – to offer some justification for the uses of fiction in
1 social science which will help students to scoop with a scholarly confi-
2 dence – ‘without self-importance or self-consciousness’ (Inglis, 1969) –
3 deep into their personal resources for persuasive writing which cannot be
4 dismissed as ‘mere fiction’. To do this calls for a methodology that can
5 deal analytic justice at the same time as experiential truth. This is a tall
6 order.
7 But: when I turn on the radio or television; pick up a newspaper,
8 a journal article or a novel; listen to a seminar presentation or watch a
9 theatre play – in each case I attune myself quite precisely, yet with minimal
40111 effort or art, to a form of truth. That is to say, I am located in a version
1 of truth whose engines are so far hidden from view that they are silent.
2 It is, of course, only when I sense that there is some fault that I begin to
3 hear the noise of those engines, and reach perhaps for a set of tools that
44111 will detect, analyse – correct, even – the fault. For strings of words don’t
160 Reflexivity

1111 mean something because they’re stuffed or laid out with propositional
2 knowledge. They mean because those words glance off much more
3 regressed knowledges – vapid certainties – which are only in later moments
4 made angular with the furniture of analysis (the pixels of experience as
5 it were suddenly organised with actual purpose from a dense galaxy of
6 possible meanings).
The problem of evaluation
1011 We are led from this consideration to ask about an enquiry, not ‘Is it
1 qualitative or quantitative?’ but ‘Is it moral?’ There remains a problem
2 of evaluation. For even if an enquiry is ‘open to its objects’, if it declares
3 the values and unique method of its author, how do we know that, and
4 what yardstick can we possibly find that will qualitatively determine its
5 morality? And anyway, if it deals in such a particular way with the partic-
6 ular, what can we compare it with and what relevance could it have for
7 general experience? Is this not likely to be the very worst of ‘subjectivity’?
8 By opposing subjectivity to objectivity we distinguish persons from objects
9 in such a way that their relation cannot be described without recourse to
20111 extremes of mentalist or behaviourist philosophy. If, on the other hand,
1 we understand the terms as continuously related ways of having objects,
2 then we take the vital step of involving persons with objects by necessity.
3 Subjectivity is defined, then, not by the particular which it dwells in by
4 virtue of its own uniqueness, but by the concern it shows to give that
5 particular a general recognition. Such recognition completes the act, and
6 the particular becomes an object constituted by sharing.
7 This process is not susceptible to validation. Because it has not explained
8 subject–object relations for its schemes, the ‘research attitude’ – to which
9 validation as a technique belongs – naively assumes this relation and is
30111 to be found acting in the firm reality of noemata. Of course, this research
1 attitude is right when it speaks of demanding validation in terms of the
2 object and not of the enquirer; it is right in supposing that the object is
3 firm and, even if constituted, that it pre-exists characterisation. But the
4 real meaning of its ‘objectivity’ is revealed when, in its provision of the
5 validation it required, it fails to distinguish between the object proper and
6 the characterisations given by what are yet more noemata. Again, vali-
7 dation needs endless shoring up with ever-regressing devices because it is
8 not object-directed.
9 We have said that a phenomenology can be known by its revelation of
40111 the author’s engagement with his or her objects. But how precisely do we
1 know that? This is still the question. And what is it that we recognise
2 and affirm or dispute?
3 If we return to the genesis of the phenomenology, we observe that
44111 there is a researcher and there is a situation of objects which s/he must
Reflexivity 161

1111 constitute. At this point there occurs a critical moment of characterisa-

2 tion that determines these objects for the researcher and for the researcher’s
3 audience. This is the moment normally referred to as methodological, and
4 which as such is the correlate of the later process of validation; indeed,
5 it is all that validation can reveal: is the method what it set out to be,
6 what its author says it is? For validation is based, as we shall see, on a
7 limited model of truth that either takes for granted, or else ignores, the
8 earlier process of verification that guarantees its coherence. Validation
9 depends on further regressed devices in quite the way that truth of state-
1011 ment and truth of things – conceptual and pragmatic truths – depend on
1 things being already what/as they are (Hofstadter, 1965). We are able to
2 proceed to their statement or demonstration only because of some earlier
3111 moment of our knowing them. Things as they are must, on pain of ceasing
4 to exist, be already partially revealed. This is what I take Heidegger to
5 mean by a-lethia:
7 Not only must that in conformity with which a cognition orders itself
8 be already in some way unconcealed. The entire realm in which this
9 ‘conformity to something’ goes on must already occur as a whole in
20111 the unconcealed. . . . With all our correct representations we would
1 get nowhere, we could not even pre-suppose that there is already
2 manifest something to which we can conform ourselves, unless the
3 unconcealedness of beings had already exposed us to, placed us in,
4 that lighted realm in which every being stands for us and from which
5 it withdraws.
6 (Heidegger, 1971, p. 52)
8 Verification stands in relation to validation as does understanding
9 to explanation. Validation, then, is a gloss on verification; or, in
30111 Husserlian terms, it is the provision of other noemata, which abun-
1 dance may yet avoid the thing itself. Attention to validation is in
2 effect an attention to method at the expense of attending to the object
3 which the method should reveal.
4 (Clough, 2002, pp. 81–83)
6 Space here does not permit a further consideration of verification, char-
7 acterisation and ‘truth’ (for this see Clough, 2002), but the final analysis
8 lies in the reader’s own ‘reading’ of the story – be it ‘told’ or ‘shown’
9 rooted in the tradition of diegesis and mimesis.
3 The critical reflections we present should not be viewed as the neurotic
44111 word-salads of academics with too much time on their hands. Well, they
162 Reflexivity

1111 could be seen in this way. But, we are very much aware that the project
2 of Researching Life Stories is one full of strange ironies and contradic-
3 tions. Surely, the strength of a good piece of storytelling lies in its ability
4 to convey a host of analytical viewpoints and prompt the reader to other
5 ways of seeing. We would argue that when life stories are used in social
6 research, researchers have a host of responsibilities and concerns that they
7 do not share with a Martin Amis, Steven King or Iris Murdoch. Often
8 researching life stories involves many potential audiences who may use
9 those stories in professional and policy contexts. Meanwhile, the labour
1011 of researchers, which may be termed intellectualism, involves engagement
1 with theorising and knowledge production. These concerns are examined
2 further in the final part of the book.
Part 4
3 The age of biography:
5 personal and political
7 considerations
3111 In this final part of the book we revisit researching life stories with some
4 further questions in mind, related to how we might teach life story research;
5 how life story researchers conceive of their audience and the effects of
6 their narratives; and the wider implications and applications of our stories
7 to theory, policy and practice. Chapter 11, Teaching, considers the craft
8 and ethics drawn upon in the writing of the stories presented in Part 1
9 of this book. While we have considered in depth the method/ological
20111 workings and posturings that led to the stories and uncovered some of
1 the analytical groundings that informed our understandings of them, we
2 want to go further here in terms of outlining some general considerations
3 for the novice life story researcher to keep in mind. Chapter 12, A/Effecting,
4 outlines how we conceptualised our audiences and how these concepts
5 influenced our approach to researching life stories. We distinguish and
6 elaborate on a number of qualities inherent in the stories in terms of the
7 reactions they may (hopefully) elicit in the reader – demonstrating further,
8 we think, the power of stories. Chapter 13, Applying, finishes the book
9 by illuminating a number of theoretical, policy and practice considera-
30111 tions in light of the four life stories and the researching processes described
1 in this book. We argue that our trans-disciplinary, multi-method/ological
2 and cross-analytical view of researching life stories provides a number of
3 applicable findings.
Chapter 11
Craft and ethics in researching
5 life stories
3111 In this chapter we ask how researching life stories can be taught. Our
4 starting point is that a textbook version of how to do life story research
5 undermines the possibilities for creativity and originality. We hope that
6 the reader has been struck by the very different narrative styles employed
7 by the authors of this book, and, perhaps, is motivated to borrow some
8 ideas in thinking about his or her own research stories. Rather than
9 attempting to come up with a toolkit version of life story research, this
20111 chapter offers some hints and thinking points. It is our view that learning
1 about life story research can be done only when we consider the ethical,
2 personal and political positions of the researcher.
Lessons from Gerry O’Toole – Dan Goodley
6 The craft of writing stories – drawing upon a non-participatory ethno-
7 graphic approach, later subjected to (subjugated by?) some form of
8 discourse analysis – would seem inevitably to involve some long-winded
9 artful exposé of the merits of such an approach. However, with the story
30111 and analysis (which together we could call a narrative) now captured in
1 frozen text – immobile and lacking in dynamism and so far away from
2 the busy life of Gerry O’Toole – I am permitted some necessary breathing/
3 thinking space to consider some moments that led to the narrative as it
4 stands. Hopefully, reflections on these moments will be useful to you, the
5 reader, in your employment of life story research.
Get to know your subjects from the inside
9 Too much research activity is based upon minimal involvement with a
40111 given group of people (referred to as participants), often over a short
1 period of time allotted by funding (usually, if you are lucky, about three
2 years), before the researcher moves on to another hot topic in order
3 to enhance their research résumé (see the Research Assessment Exercise
44111 for details or not as the case may be). The current climate of research
166 Teaching

1111 production is in danger of missing out on the gifts of longer-term – perhaps

2 voluntary, non-funded and non-vocational – relationships with people who
3 can enhance a researcher’s knowledge of the world. When Plummer (1983)
4 argues that we need to get to know our informants from the inside, he
5 is hinting at the need to work relationally, emotionally and empathically
6 with the people whose stories we are helping to tell. In my own case, my
7 understandings of ‘learning difficulties’, disability, exclusion and inclusion
8 have really been understood when I am involved with people whose lives
9 are a constant struggle against the associated socio-emotional ailments of
1011 being given some spurious label. Gerry’s story is informative – at least
1 for me – because it is a (mere) product of a number of my long-term and
2 ongoing relationships with others. Crucially, while such involvements have
3 often given me a host of grounded intellectual ‘Aha!’ moments – when I
4 feel like a disability studies researcher – it has also demanded that I make
5 a number of emotional and personal affiliations and decisions. If I had
6 understood Gerry and his peers as passive handicapped people, the subse-
7 quent story would have been very different from the one emerging here.
8 My own epistemological view of people – which may be grandly termed
9 poststructuralist – only ever made sense to me on a personal level: Gerry
20111 and his peers were/are clearly being created by the institutions (and asso-
1 ciated knowledges) in which they were placed. Getting to know our
2 informants requires personal and political investment in them. This raises
3 issues connected with truth – if we know them, we will speak their truths.
4 I know that Gerry and his peers are not the pathological victims of impair-
5 ment that society expects them to be; they show this to me during all our
6 interactions. But I know they are not those victims because our relation-
7 ships would soon change and die if I were ever to view them in these
8 ways. Getting to know our subjects – and let’s hope we actually start
9 using words like ‘friend’ or, maybe, ‘comrade’ – demands real knowing
30111 on the levels of emotion and intellect.
Getting to know yourself from the in/outside
4 As important as knowing others is knowing yourself and, perhaps, taking
5 yourself seriously. Much research training – especially qualitative research
6 – involves giving up on the things (people, knowledges and commitments)
7 we know and aiming to embrace the communities of practices or para-
8 digmatic peculiarities that go with being a researcher. I remember touting
9 the idea of using stories in research to a postgraduate seminar a few years
40111 ago and being told that if I did take the narrative turn, I needed to expose
1 my multiple selves in an explicit way so that others would know my posi-
2 tion. But what of attending to that self – or collection of selves – we
3 already know but which, often, remain un/der-exposed? I am consistently
44111 amazed by the number of practitioners and activists I meet – often in
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1111 educational, health and social welfare contexts – who have years of expe-
2 rience in their trade but who, when faced with a research project to
3 implement, forage away in the library for a topic of interest. When asked
4 about the work that they do and then demonstrating many important
5 considerations that need to be changed in their work contexts, so often
6 they do not treat their own stories and experiences as the very stuff of
7 research. Researching life stories offers opportunities for drawing on our
8 own and others’ narratives in ways that can illuminate key theoretical,
9 policy and practice considerations. Researching life stories allows us to
1011 bring in parts of us. There would be no Gerry without my involve-
1 ment with him. My hanging around with him – that I have termed non-
2 participatory ethnography – gave me the raw material from which his
3111 story was created. Getting to know ourselves would appear to be a crucial
4 part of life story research – in terms of considering the subject matter,
5 the significance of that subject and, most importantly, the objects of our
6 subject whose voices are so often lost in paradigmatic debate and intel-
7 lectual pretentions.
Pushing forward the boundaries of ownership and
2 I sent a version of Gerry’s story to a colleague of mine. He knows Gerry
3 well – or at least the character on which Gerry is based – as well as some
4 of the others mentioned in the narrative. He was critical:
6 I must admit I had problems with this piece. I wasn’t sure whose
7 voices I was hearing, whether they were real stories or ones someone
8 had compiled for effect. But the biggest difficulty I had was that the
9 main character, Gerry, had, in part, become you, with your ways of
30111 thinking and some of your actions imposed on him.
2 This colleague is – to use his words – more of a ‘grounded researcher’,
3 who would want to re-present only the real stories of real people as they
4 really took place. But this is as much a position as one where the researcher
5 takes over and speaks on behalf of others. To say that one is allowing
6 their informants to really speak for themselves is, in my opinion, as much
7 a power position as those taken by the authors of Frank, David and Gerry
8 in this book. Researchers are always pulling strings. When someone’s
9 interview response is re-presented in a story – accents, mistakes, pauses
40111 and inarticulate spoken word as static, finalised text – the researcher has
1 owned a position in terms of storytelling. I personally have massive prob-
2 lems with authors who feel it is perfectly acceptable to use academic-speak
3 of the written text when writing in the ‘I’ and then pepper it with the
44111 fumbling spoken words of their informants (always the ‘other’). As I found
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1111 to my cost when constructing the life story of Joyce Kershaw, in which
2 I wrote her story as she spoke it, she later instructed me, ‘Danny, don’t
3 write how I speak, write as you write’ (Goodley, 1998, 2000). Stories are
4 not simply methods for transparently capturing real worlds and real people;
5 they are always constitutive methods (Potter and Wetherell, 1987). The
6 question of ownership is also one of partisanship. Researchers can allow
7 their informants to speak, but whose side are they on (Barnes, 1997)? At
8 least, in joining up with a person in collaborative storytelling – or allied
9 storytelling in the case of Gerry – I had to make a decision whose char-
1011 acter I was going to build up (and who else I was going to assassinate):
1 I chose Gerry for the former (and professionals for the latter). Owning a
2 person’s story will lead to very different narratives depending on our affili-
3 ation with that person. My hope is that Gerry’s story is authentic to the
4 vision I have of him: as a quiet revolutionary. He may be embarrassed
5 by my sad sixth-form politics view of him, but never mind; as some would
6 say, it is my story not his.
Everyone has a story to tell, everyone can write a story
20111 I am still not sure if Gerry’s story is that good. What a thing to admit,
1 eh? But I’ll lay my anxieties out in the open here – and maybe my precious
2 credibility – because in considering ‘craft’ in storytelling I do feel rather
3 uneasy. I have a constantly recurring nagging feeling that I am not a
4 writer. It’s a feeling that wells up when I’m at academic conferences and
5 the sea of professional, novice, ageing and renowned researchers in the
6 conference auditorium makes me question where I see my own standing.
7 It’s also a feeling I get when I reread Catcher in the Rye (okay, I never
8 left adolescence) and think: ‘I could never write like this – so funky and
9 seductive.’ I feel better when I remember that researching life stories is
30111 about embracing a gamut of narrative styles and that, just as with music,
1 the many forms of storytelling give it its richness and depth. Anyone – I
2 mean anyone – can tell a story. The question is – is it a good one? In
3 the final analysis, perhaps, the qualities of a story will depend on audi-
4 ences (which we look at in detail in the next chapter) and their expectations.
5 When I see Gerry and his peers now, I feel happy with the story because
6 I feel it has done some justice to their achievements. I also think that
7 Gerry has a cracking story to tell.
Lessons from Colleen – Rebecca Lawthom
1 Considering emancipatory approaches and the voice relational method, a
2 key issue is collaboration. The participants in this approach are not passive,
3 disinterested, absent individuals, but have a key role to play in the design,
44111 analysis and shaping of the story. Working with informants, and gaining
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1111 their confidence, is an important feature. Listening to women’s voices is

2 one of the broad research traditions in feminist psychology (Wilkinson,
3 1999). Gilligan (one of the founders of VRM) noted,
5 I picked up what you’re not supposed to pick up in psychology –
6 that there was a voice, and I asked ‘who’s speaking?’, ‘whose voice
7 is this?’, ‘whose body and where’s it coming from?’ If you listen to
8 the imagery of sexuality and separation . . . you realise this is a man’s
9 body. This is a man’s voice speaking as if from nowhere.
1011 (Kitzinger and Gilligan, 1994, p. 413)
2 The different voice (with which women speak) prompted the emergence
3111 of the voice relational method and its radical potential:
5 we begin to see the outlines of new pathways in women’s develop-
6 ment and also to see new possibilities for women’s involvement in
7 the process of political change.
8 (Brown and Gilligan, 1993, p. 32)
20111 One of the strengths of this approach is its accessibility for informants
1 and co-researchers. Working within an emancipatory framework, and
2 involving storytellers in the analysis, allow full inclusion in the research
3 process and the possibility for emancipatory understanding. Working
4 closely with co-researchers upon the text, allows positive storytelling and/or
5 alternative narratives (as in narrative therapy). Storytellers can be shown
6 the significance of their tales and their emancipatory stance. The fourth
7 reading of the VRM allows storytellers to see the structural (often deter-
8 mined) nature of agency, within which they may contexualise their own
9 story. Moreover, the social nature of subjectivity suggests that the ‘person
30111 is connected socially and culturally to others’ (Nicholson, 1996).
1 Research production is often portrayed as an individualised identity
2 project – gathering data for this purpose will enable particular publications
3 and dissemination activities, which more often than not contribute more
4 to the researcher’s life than the informant’s. Working inclusively with
5 informants may potentially allow change on the part of the storyteller, as
6 reflection, alternatives and ambiguity are discussed and analysed. More-
7 over, the VRM sets data in a wider context, which potentially removes
8 blame from the storyteller (the idea of discourse framing action). The
9 personal is political and VRM shifts analysis between these two spheres
40111 and connects them.
1 An important idea in allowing stories to emerge is a belief (on the part
2 of the researcher) that a ‘good’ story will emerge. A research focus deemed
3 appropriate by the researcher will not necessarily fit into the narrative
44111 told by the informant. All people have stories to tell, but research formats
170 Teaching

1111 with implicit demand characteristics often do not allow data to emerge.
2 Rather, we presume that a format will yield interesting data, but who
3 defines ‘interesting’? Seeing narratives as central to meaning-making is an
4 important part of the voice relational method. The acceptance of the story,
5 and the clarity of the researcher’s stance, allow informants to feel that
6 what they have to offer is appropriate. After interviews have been
7 conducted and the tape recorder is switched off, informants often ask
8 ‘Was that alright?’ or ‘Did you get what you wanted?’, as if they need
9 to expose some deep and meaningful psychological truth. Here we are
1011 arguing that, by getting to know informants and their stories, data will
1 emerge. Respecting the stories people have to offer involves both trans-
2 parency on the part of the researcher and a consideration of ethics.
Ethical considerations
6 Relatedness is key to this approach, but whose voice dominates? More
7 equal research relationships might shift the balance of power, but ulti-
8 mately the openness of the process may still position the researched as
9 knowing less (and thus vulnerable). Larson (1997) notes that when working
20111 with narrative, conversation is important:
2 This monological method of storytelling and taping felt far more akin
3 to poor therapy than to a collaborative effort to make meaning of
4 life experience.
5 (Larson, 1997, p. 457)
7 Using VRM in an emancipatory fashion, the presentation of the narrative
8 (polished and edited by the analysis) at least allows a hidden voice to be
9 presented as a ‘self’ rather than as a collection of selves distributed and
30111 fragmented across themes or discourses. Ethically, the storyteller retains
1 editorship of the narrative and thus can present divergent and contrasting
2 selves within the narrative. The researcher (always cognisant of final
3 outputs) needs to be flexible in the process and to allow ambivalence and
4 ambiguity to emerge.
5 Colleen’s story is a great example of a story that has element of ordin-
6 ariness about it (leading her to think that this would be a boring story)
7 and elements of utter individuality. The mosaic of experiences, once pieced
8 together, gives a rich and varied picture of one woman’s life. Colleen is
9 now probably closer to you as well, and yet you already have a Colleen
40111 figure near you, who has a story to tell.
1 What are the key points here?
3 • VRM allows us to gaze on the emotional world (relatedness) and
44111 material world.
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1111 • Working with informants in this way can be political and inclusive.
2 • The relationship between the researcher and the researched is key to
3 the process.
4 • The researcher should share his or her theoretical stance and acknow-
5 ledge this as a relativist position (i.e. it is simply one position and
6 not the position).
Lessons from David – Michele Moore
1011 In the regular world of ‘good research practice’, a decision to set about
1 researching life stories would involve strategic planning of the work. There
2 should be negotiation with whoever is to be the focus of the research
3111 over the terms of their – and the researcher’s own – engagement. Judicious
4 consultation should take place throughout the course of the project over
5 ongoing processes of collecting and making sense of data to ensure that
6 the analysis being produced is not manipulated by the researcher in ways
7 that go against the interests of the person whose story is being researched.
8 What I have found, however, is that life story research often originates
9 in situations where complications abound and the usual principles of well-
20111 organised research design fly out of the window. This was the case in
1 the project with David. I didn’t go to meet David thinking I was about
2 to embark on life story research; rather I found myself having stumbled
3 into his life, affected by it and affecting it and only later, once the life
4 had ended, did I come to think ‘maybe there was some life story research
5 in that’.
6 Originally I had conventional research notions about perhaps inter-
7 viewing David and other ‘key stakeholders’. I toyed with the idea of trying
8 to collate observations of his interactions with his parents and various
9 caregivers and at one stage I even wondered about trying out some personal
30111 construct techniques (Bannister, 1977), which not only promised insight
1 into how he saw the world but also, having respectable roots in psychology,
2 might have provided the kind of data that could be afforded a modicum
3 of recognition by the armies of providers looking at David’s situation
4 from a medical perspective. All of these activities seemed to me to be
5 legitimate ‘research’ activities. But I was frustrated by the lack of open-
6 ings for ‘proper’ research in my dealings with David: he just did not want
7 to know. I felt very strongly from the minute I met him that what was
8 happening to him was important, that other people needed to know
9 and that collusion with the silencing of David’s story was not an option,
40111 but ‘just telling his story’ seemed whimsical, insubstantial and likely to
1 be inconsequential.
2 Looking back now, my concerns about the value of storytelling were
3 very wide of the mark. The stated reservations seem incredible, not least
44111 because my chief coping mechanism at the time was to immerse trusted
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1111 others in the story. Hours went by on the phone, going over the latest
2 instalment, and many more were spent trying to make sense of the story
3 with colleagues who had first-hand experience of disability or disability
4 in the family. David’s story was one that people wanted to know and
5 comment on and contest, but it still didn’t occur to me at the time that
6 the first thing to be done as a researcher agitating for change was to ‘get
7 his story out there’. What I have learned is that the power of the story
8 – told even as it is in the style of awkward and amateur first fictions –
9 is immeasurably greater than scraps of interpreted transcript, appraisals
1011 of interactions witnessed through the lens of an outsider, or the polarised
1 manipulations of a lay construct analyst. So the first lesson I would pass
2 on is to encourage confidence in the value of life story research, and the
3 second is to be aware of what is happening around you because you can
4 be embroiled in life story research without knowing it at the time.
5 Often in situations where research seems prohibitive, the potential, and
6 imperative, for life storytelling is there. For example, last year I assisted
7 in the delivery of a friend’s baby that had died. During and after the
8 delivery, every researcher instinct I possess told me I should record and
9 interrogate many harmful and traumatising aspects of professional prac-
20111 tices observed. Disabling assumptions about the presumed quality of the
1 baby’s life were used to negate the tragedy of her death in brutal and
2 unthinking ways. The situation unfolded too quickly, emotions were too
3 raw and the stakes were too high to elaborate careful research practices.
4 In the end we are left with ‘only’ the story to tell.
5 But the simplest story of what went on, combined with analysis grounded
6 in the social model of disability, would generate clear and immediate
7 practical recommendations for nurses and other practitioners involved in
8 the delivery of babies who have died, with transforming consequences
9 for parents. I couldn’t research the story in situ. I can’t do it yet, but
30111 practising life story research provides a possible strategy for not losing
1 such critical witnessings. The story can be picked up when the individ-
2 uals concerned, including the participant researcher in this case, become
3 able. The necessity for ‘research’ to be done soon can be obviated. The
4 power of the story will not diminish. With the benefit of hindsight and
5 having learned much from the failings of my work on David’s story, I
6 hope it would be possible to protect against diminution of the analysis
7 by more effectively thinking ahead on proposed dissemination mechanisms
8 this time. However, this piece of life story research, if it does ever mate-
9 rialise, can be based firmly upon a premise of consultation and many of
40111 the ethical contortions that have characterised the researching and telling
1 of David’s story might not surface. The pointer here for other researchers
2 would be to understand the scope for life story research that emerges
3 through your own life experiences. Our own experiences are often the
44111 source of our deepest and most intimately informed understandings. In
Teaching 173

1111 the context of supervision of research students and researchers in the field,
2 I have seen the potential of life story research in sensitive situations being
3 realised many times.
4 Telling stories provides an accessible and familiar starting point for both
5 researchers and those who are ‘the researched’. Life story research is
6 invaluable when conventional research options are closed down. It is also
7 invaluable in all those situations where, looking back, you feel you may
8 have missed the moment or where, looking forward, you know that the
9 situation precludes the possibility of systematic enquiry. For whatever
1011 reason, telling the story will have to suffice. What I understand, having
1 come through the journey of telling David’s story, is that life story research
2 is not a methodological strategy of last resort but frequently the methodo-
3111 logical strategy of choice.
4 I have learned that ‘the devil really is in the detail’. Details can carry
5 a story and a missing detail can render the essence of something indes-
6 cribable. Note-making (not necessarily the same as note-taking) is
7 immensely important for getting the story to work in the way you intend,
8 particularly if you want to achieve a sense of realism. I have unending
9 regret that I made notes about what happened to David with a view to
20111 detailing the sequence of main events but recorded little else. I didn’t note
1 the sights and sounds of his exclusion or the signs of his pain, and there
2 would be lessons to learn – as well as audiences to capture through
3 those details. Above all, I remember the smells of David’s skin as being
4 unexpectedly expressive but I cannot recall the associations that would
5 evoke understanding of this for a reader. Write down – or talk onto tape
6 – as much as you can about what you notice. Even fleeting details can
7 be precious. But the most important thing I know now is that life story
8 researchers must open up the processes of consultation as early as we
9 possibly can, because, as David’s story shows, events may overtake you.
Lessons from Frank – Peter Clough
3 The stories in this book (and it must be remembered that they are stories)
4 can offer up this bit and that bit in ways which make the reader the ana-
5 lyst. Frank, for example, is a story that requires at least two levels of
6 analysis. The first has been done by the author – sorting and sifting the
7 various themes of the data – deciding on the order in which they appear,
8 deciding how much to tell about ‘Frank’. The second has to be done
9 by the reader; reading Frank is difficult because it becomes a story only
40111 when the reader takes on the role of researcher and is prepared, in some
1 way, to ask questions of the story as it is presented. Lessons from Frank
2 are learned only as the reader is prepared to select important themes for
3 her/himself. Importantly, readers of Frank must not only take from the
44111 data but also add data which help them to make sense of the story in
174 Teaching

1111 terms of their own lives and their own experiences. So – there will be
2 many ‘readings’ of Frank; the data and their meanings will take many
3 forms. The seven themes that I have selected in the discussion of the
4 ‘contexts’ of Frank (see Chapter 9) are effectively categories for analysis
5 – but there could be many more.
6 For example, I asked a woman colleague to read Frank and tell me
7 about the lessons she derived from it. For her the forceful lessons were
8 not those of religion, sexuality, or her father; the most powerful connec-
9 tion she made was with the notion of ‘roots’ and of belongingness. She
1011 talked at length with me about how she never felt she belonged anywhere
1 because her family were forever on the move – moving out of the area,
2 out of difficulty, away from debt, away from trouble and, eventually, she
3 and her mother moved ‘one more time’ (so she was told) away from the
4 abuse of her mother’s lover. For her, Frank opened up her own story of
5 ‘moving’ – she’s still on the move ‘First scent of trouble – I’m off,’ she
6 said, ‘no roots – no history – no relationships – no debts to anyone’.
7 The lessons from Frank are intensely personal. My lessons are not yours
8 – no one will ‘read’ the same story.
2 Researching Life Stories leads us into a complex arena of ethical debate.
3 While the usual criteria of assessment such as informed consent, anonymity
4 and potential withdrawal contain much social scientific research, life
5 story research throws up a host of difficult considerations. Perhaps, what
6 all of our musings have in common is a not uneventful engagement with
7 the lives in life story research. We are concerned that narrative does not
8 disserve the very people it is meant to represent and address. This leads
9 to a more qualitative and interactional view of the ethics of research –
30111 to critically embrace a deontological view of research: to have a sense of
1 duty to support others’ rights. With such views in mind we are forced
2 to think about significant others – including our audience, to which we
3 now turn.
Chapter 12
Audience and effects in researching
5 life stories
3111 Introduction
Who are our stories for? When we wrote our ‘target audience’ section of
the book proposal we not only included under/postgraduates and other
researchers in the social sciences but also non-academics with an interest in
stories. These might include practitioners – from psychotherapy and coun-
selling, social workers, nurses, doctors, teachers and other educational pro-
fessionals. Moreover, we hope/d that the mention of stories might whet the
appetite of the reader searching Internet bookshops for a cracking good
yarn, but we doubt it. We expect that readers will be academic, researcher
or practitioner by trade, with an interest in qualitative research and, perhaps,
in some of the epistemological and theoretical debates hinted at in the title
of the book. But of course, we did not just think of audience groupings.
When we came to write this book we were also thinking of the possible dis-
positions and expectations of our audience. We suspect some readers have –
or maybe had – some doubts about the doing of life story research. We also
suspect that readers from our disciplines of psychology, education, soci-
ology, feminist studies and disability studies might have stumbled across this
text. We have heard many times the argument that researchers cannot hope
1 to alter the things that audiences do with the research they disseminate. We
2 would share such a view. We do not expect to radically alter the mindsets of
3 the readers we have in mind (though we secretly hope that we have influ-
4 enced at least a few). However, we do know that our perceived potential
5 engagement with an audience has affected the stories we have written and the
6 exposition of methodology and analysis produced in this book. This chap-
7 ter aims to explicitly consider how life story researchers conceive of their
8 audience and how such conceptions impact upon researching life stories.
‘Is it really like that?’ Towards enlightening
stories – Dan Goodley
3 A Design for Life exists as a story with the potential to illuminate the
44111 readers’ understandings of what life is like – or can be like – for a group
176 A/Effecting

1111 of people disempowered by society and its institutions. The story fits the
2 mould of a lot of ethnographic and biographical writing in the learning
3 difficulties field which has drawn attention to what Dexter (1956) called
4 the social problem of learning difficulties. I have described elsewhere
5 how a number of accounts of people with learning difficulties have
6 clarified the socially constructed nature of disability (Goodley, 2000).
7 These include The World of Nigel Hunt (Hunt, 1967), Ed Murphy’s story
8 by Bogdan and Taylor (1976, see also 1982), Tongue Tied by Joey Deacon
9 (1974), Kaufman’s (1988) account of a mother and disabled daughter and
1011 Atkinson and Williams’s (1990) anthology of prose, artwork and poetry.
1 In addition, Korbin (1986) presents the life course of Sarah – a Down’s
2 syndrome child to show the impact of social factors on development,
3 and Lea (1988) refutes pathologising clinical definitions via the poetry of
4 people defined by such criteria. Potts and Fido (1991, see also Fido and
5 Potts, 1989) collected the oral histories of a number of long-term residents
6 in an English mental hospital, and Oswin (1991) uncovered people with
7 learning difficulties’ experiences of bereavement. Cheston (1994) provides
8 the accounts of ‘special education leavers’, while Angrosino (1994) talks
9 of how he collected life stories in On the Bus with Vonny Lee, and Booth
20111 and Booth’s (1994) Parenting under Pressure explores the personal stories
1 of parents with learning difficulties. All of these narratives – to which
2 perhaps we could add A Design for Life – can be considered to be enlight-
3 ening stories. These accounts aim to move the reader into feeling the
4 lifeworlds of people whom they may not (want to) know in a number
5 of ways.
9 In writing A Design for Life and its subsequent analyses, I wanted to
30111 present to the reader the possibility of life not being lost even when one
1 is at the margins of society. With practitioners in mind, I was reminded
2 of Means and Smith’s (1994) argument that in the context of community
3 care, those involved often tend to become so caught up in the change
4 elements of the system that they ignore the very real conditions of oppres-
5 sion that still exist for some of society’s most marginalised people
6 (including people with learning difficulties). The Disability Discrimination
7 Act (1995) and the White Paper Valuing People (2002) are examples of
8 legislation that have only just started to take seriously the potential for
9 victimhood that can afflict people with learning difficulties (and we return
40111 to them in Chapter 13). A Design for Life was written at a time
1 when these policy debates were very much ongoing. Hence the stories
2 of David, Katy, Kevin and Ricky demonstrate the impacts of being objecti-
3 fied, assessed and governed every moment of every day of one’s life.
44111 The aim here is to draw the reader into the full horrors of ‘disablement’:
A/Effecting 177

1111 an experience of exclusion of people with impairments (Oliver, 1996).

2 But this is not only about eliciting sympathy. It should also be about
3 empathy and camaraderie – to relate with our characters, to feel their
4 pains and, also, to celebrate their successes. This latter point links in with
5 another possibility: the stories of Gerry and Maddie suggest better lives.
6 Gerry O’Toole is a person with the label of learning difficulties who has
7 done much. Not only has he managed to find a fruitful place in society
8 – he has done so against the odds. Also, though he perhaps doesn’t know
9 it, he has lived a life that says much about disabling society – which has
1011 failed to keep him down. All good heroic tales engage with the audience’s
1 optimistic side: by sharing tales of winning against the odds. The story
2 aims to enlighten the readers about the submerged dangers and hidden
3111 treasures of life (Corbett, 1998).
7 We have tried to demonstrate in this book that researching life stories is
8 very much a challenge to taken-for-granted orthodoxies of social scien-
9 tific research. In telling stories we want to suggest that researchers may
20111 have to leave their well-used methodological and analytical tools behind.
1 Plummer (1983) suggests that narrative research means turning to the
2 tools of the poet, the artisan and the dramatist. Often, such a call is seen
3 only to refer to the stages of narrative construction – what we might call
4 method/ology. In addition, I would suggest, life story research – stories
5 plus analyses – must provide twists in the tale: to present scenarios that
6 the reader might not be expecting. To turn back to the discourse analysis
7 in Chapter 9, Gerry is depicted as a theoretical doer in the greatest possible
8 sense – he deconstructs and disrupts the social conditions around him,
9 as he moves in and out of welfare-dependent contexts, in an almost
30111 cavalier fashion. His narrative is theoretically imbued. His actions are
1 praxis in the classic Marxist sense – action and meaning-making inter-
2 twined. He goes into the day centre to sit passively before the staff member
3 baking the cake. He excuses it as an opportunity to see his mates, moving
4 on to the market or the pub football team: a wealth of experiences ahead
5 of him. His deconstruction, so often just a wordy, cognitive phenomenon,
6 is active and real. Gerry, the great poststructuralist (O’Toole, G. (2004)
7 Poststructuralism in Practice, Somewhere in Britain: The Realworld
8 Publishing House – anyone?). Nisbet (1976) argues that when sociology
9 embraces the arts, we want to garner readers’ support for our ideas about
40111 the world through appealing to their affective as well as cognitive sides.
1 The beauty of emotion is that it so often works its way through a tide
2 of repressive rational thought. What may seem exaggerative to the rational
3 may seem plausible to the emotive. An exaggerated point of analysis may
44111 well seem viable in the hands of an authentic character. Presenting a
178 A/Effecting

1111 ‘handicapped person’ as the purveyor of elegant theories seems so much

2 more at home in a story than it does in the rational context of the social
3 sciences.
Dealings with reality and relativism in researching
life stories
8 For all this talk of art, my storytelling was driven by a clear resolve:
9 to insist to the reader that people with learning difficulties, in terms of
1011 cultural and economic capital, live in poverty; but the news of their
1 demise is premature. Analysis driven by poststructuralism will necessarily
2 aim to challenge radical relativism, the philosophy that accepts a zillion
3 interpretations. Instead, the conquest may be seen as one of the critical
4 realist; accepting that there are many interpretations out there but they
5 are always underpinned with ideological (and discursive) foundations
6 which we need to allude to. Gerry’s story says a lot about living with
7 the label of learning difficulties, especially the way in which this object/
8 subject position permits professionals an intrusive role. The accompanying
9 analyses aimed to tackle the construction of the very real phenomenon
20111 of ‘learning difficulties’. Here, perhaps, we have the transition state of
1 poststructuralism. Following Harding (1992), in deconstructing ‘learning
2 difficulties’ we are in danger of leaving it as a phantom entity – far from
3 real in a discursive no man’s land – now firmly held in the fist of the
4 poststructuralist writer. This is the contradiction of postmodernity, where
5 any deconstruction is transitional – neither real nor fiction. A way forward,
6 following Parker (1998), is offered by a critical realist position which
7 recognises that the end point of deconstruction involves recourse to society.
8 So, learning difficulties is understood as a real phenomenon, that people
9 are defined in relation to (having it or not having it), bringing with it a
30111 host of ideological baggage. It does not disappear with deconstruction, it
1 is reborn but as a socially created thing that needs to be viewed with a
2 critical eye. Here is another argument for analysing life stories: to persuade
3 the reader of the real and not so real things of the timbres of a narra-
4 tive. They are real, Captain, but not as we know them.
‘So it could be like that’. Emancipatory stories –
7 Rebecca Lawthom
9 Reconceptualising participants, reconceptualising the
40111 audience
2 Working within an emancipatory project is a very different way of doing
3 research. Working with people rather than on people allows the emergence
44111 of a liberated psychology (e.g. Kagan, 2002). In contrast to other ways
A/Effecting 179

1111 of measuring and monitoring human experience, community psychology

2 takes social change and social action seriously.
4 A liberated academic psychology must position itself in solidarity with
5 those who are marginalized and have hitherto been without a voice
6 in the discipline, or indeed in society.
7 (Kagan, 2002, p. 10)
9 Community psychologists work within an emancipatory paradigm, sharing
1011 information, collaborating with people who are experts about their lives,
1 working with people often marginalised by the social system and working
2 towards empowerment. This is a distinctly different agenda. Indeed,
3111 Rapaport asks us to
5 consider how differently we would speak, what different priorities
6 we might have, and how differently we might relate to our own
7 (and mainstream psychology’s ) rhetoric if we spoke with ‘the people’
8 and ‘oppressed communities’ rather than to ourselves and other
9 psychologists . . . We might begin to see that our own practices and
20111 promises are often naïve, elitist, romantic, reifying and/or obfuscating
1 . . . our struggle for legitimacy and impact would be different if instead
2 of being aimed at journal editors, departmental heads, and colleagues,
3 it were directed at those people and communities we profess to
4 champion.
5 (Rapaport, 1977, p. 313)
7 Whilst we are not professing to be doing community psychology, we are
8 trying to work in emancipatory ways. By presenting narratives of differ-
9 ence that have been co-collected, co-authored and co-analysed, we can
30111 hopefully present an array of possibilities for readers. These possibilities
1 may be experienced as recognition of experience, celebration of women,
2 personal change and ultimately social action. We are not claiming that
3 reading narratives incites people to join social movements, but that there
4 are undeniable impacts upon the audience.
5 The audience operates on a number of levels. There are similarities with
6 Augusto Boal’s (1979, 1992, 1995) notion of the ‘spect-actor’, who, upon
7 watching a performance, can stop the action and transform from a passive
8 spectator into an actor, who enacts an alternative course of action. In the
9 same way, our audiences may well draw parallels with our characters’
40111 lives or envision alternatives. In this way, we may reach audiences who,
1 previously disempowered by or dislocated from research, can make sense
2 of stories, as research.
3 By inviting Colleen into the collaborative venture of this research, I
44111 aimed to make clear the links between actuality and academia. Following
180 A/Effecting

1111 the tenets of a liberating view of community psychology, the aim here
2 is to invite people into research who are so often the distant audiences
3 of our research. Historically, psychology, for example, has created a
4 body of knowledge on people, about people, with the aim of restoring
5 normality or betterment to people’s lives. Potentially and in contrast,
6 researching life stories demonstrates an approach to emancipatory research,
7 which locates research paradigms – such as psychology – back in the
8 community. Now located, our traditional passive recipients of psycho-
9 logical theory become co-researchers and theoreticians, challenging the
1011 distinction between expert and client, psychologist and participant and
1 researcher and researched. One key intended audience of such an approach
2 to research will be other similar co-researchers. Hence, the aim here is
3 reconsider our participants and by doing so we rethink the audiences that
4 we hope to pass our stories onto.
Transformative research, transforming audiences
8 With narrative, as with many research processes, there are immediate
9 (proximal) audiences and wider (distal) audiences. We talked of the
20111 way in which narrative may be constructed as linear (with intended
1 audience in mind) in Part 2 of this book. Colleen wanting to present an
2 orderly tale, which made sense. However, the authorial shaping was jointly
3 undertaken and thus a declared feminist lens was added. In Colleen’s
4 audience design her desire is to make sense of her own life. In my intended
5 academic community, I want to present (implicitly and explicitly) a
6 feminist reading. Moreover, the emancipatory element inspires us to
7 present positive change. So, who might read and be a/effected by Colleen’s
8 story?
9 The wider feminist community is a sector of the audience. Millennium
30111 feminism (in its various theoretical perspectives) should still be energised
1 by politics. Social activism is ‘the project within which we conduct our
2 work’ (Fine, 1992, p. viii). Moreover, women and men who read Colleen’s
3 narratives (as non-feminists) may see the possibility of change and the
4 gendered practices that constrain the ‘doing’ of masculinity and femininity.
5 It becomes possible when reading Colleen’s story to see how patriarchal
6 discourses shape lives, impacting upon agency. Colleen directly addresses
7 the audience when she talks of gender relations and work–family–life
8 balance:
40111 whether ever anyone will ever think it is a really wonderful job
1 that women do I don’t know. Whereas when men stay at home
2 to look after the children as a househusband permanently or what-
3 ever, everyone thinks that is absolutely wonderful and will talk about
44111 it . . .
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1111 The very fact that Colleen herself (despite not wanting to talk about her
2 present relationship in detail) talks about leaving her husband for a woman
3 partner is indicative of a number of points. First, Ochs and Capps (2001)
4 note that sometimes narratives remain untold if perceived to be inappro-
5 priate or politically unfeasible. However, Colleen situates the leaving
6 episode within her narrative and it remains there following the editing
7 process. Second, the leaving episode is not presented as unproblematic
8 or positioned as a high moral stance. Colleen skilfully articulates the
9 new relationship (with a woman) without ‘coming out’ forcefully. The
1011 story also has much to say about the development of self (whether that
1 is labelled as confidence, esteem, or character) in the modern world.
2 Rather like the children who ‘grow like flowers’ in Colleen’s story, Colleen
3111 herself through social relationships transforms into a confident woman
4 (able to leave a non-functioning relationship). This new position is further
5 highlighted by her marginalised lesbian status in a dominant heterosexual
6 society.
7 Such slices of life taken from Colleen’s narrative demonstrate, I hope,
8 the storying of emancipation, so much so that some readers may say ‘So
9 it could be like that?’ The story is viewed as potentially transformative.
20111 Rather than viewing knowledge production as knowledge for knowledge’s
1 sake, I would suggest that Colleen’s narrative can be seen as an emanci-
2 patory narrative that may well stimulate and inspire or, at the very least,
3 allow others to rethink their own views of, say, gender differences
4 and the expectations of women. Stories are peculiar cultural artefacts that
5 have the potential to stir minds and promote action. We have only to
6 look at the impact of song, film and drama to see how our very opinions
7 and perhaps actions can be thrown into sharp relief by a (moral or polit-
8 ical) tale. The same view of narrative research can be taken – that we
9 aim to inspire audiences rather than lay them dormant by academically
30111 grounded research endeavours.
‘It shouldn’t be like that’. Didactic stories –
3 Michele Moore
What are these stories for? What are they designed to do?
7 David’s story was written to prompt critical insight into the dominance
8 of medical and individualised discourses in a disabled person’s life and
9 to raise questions about the ways in which these discourses shape other
40111 people’s lives. It has been written to encourage an appreciation of different
1 approaches to disability and impairment and to provide a vehicle for crit-
2 ical evaluation of values and problems which continue to be of immediate
3 contemporary concern. It tries to provide some affirmation of David’s life
44111 following spinal cord injury. It is a story written to make a writer feel
182 A/Effecting

1111 less guilty about her own role in the silencing of oppression. It is a story
2 born out of anger and disillusion intended to make explicit that David’s
3 experience ‘shouldn’t have been like that’, to provoke resistance and to
4 persuade a reader to confront abusive support practices.
5 One of the most important things to get across through David’s story
6 was the uneven distribution of power between him and his allies and the
7 professionals involved in his life. Regrettably this imbalance is also a
8 feature of the way in which his story has been produced. At this point
9 in the book it will be very clear to the reader that potential for misuses
1011 and abuses of power in life story writing is large – especially when the
1 person whose life being written about is dead. Telling David’s story may
2 raise his issues, but neither the process of constructing the story nor its
3 final production or dissemination will benefit him. Arguably, placing the
4 story in this academic and relatively erudite book on research method-
5 ology, distances knowledge of what happened to David from the bigger
6 arena of debate about personal assistance and disabled people’s entitle-
7 ments, which was at the heart of his own concern. All of this reminds us
8 that there are obvious and challenging questions to be posed regarding
9 the purposes of life story research. To add to the list, the relationship
20111 between the written language of the story and the actuality of events is
1 treacherously ambiguous. There is no one ‘true’ narrative for a reader to
2 get hold of, but many possible interpretations of what went on. Because
3 all stories, in their writing, reading or telling, are cultural products,
4 embedded in the specific personal, political and social contexts occupied
5 by the author, the characters and the readers, the impact of any story on
6 prospective readers is difficult to envisage.
What effect do the stories have on whom?
30111 The effect David’s story can have will depend on who gets to read
1 it. This offers a dispiriting prospect. For example, in Hampshire, where
2 local authorities have decided that disabled people should lose 100 per
3 cent of their disposable income to pay for charges for non-residential
4 services, policy officials need to read it (NCIL, 2003). Campaigners
5 who treat uncritically the assumption that personal and intimate care for
6 men with spinal injuries should be provided by their mothers, need to
7 read it. Disabled people seeking the right to ‘mercy killing’ because they
8 find the pain of starvation unbearable, ‘with cramps and headaches and
9 general body pain’ (Such, 2003), might find that the story presents new
40111 challenges to exclusionary systems, values and practices. It is unlikely that
1 the story will fall naturally under the gaze of such audiences, but it will
2 put any reader in mind of how we each need to do something about
3 recognising and challenging disabling policies and practices wherever we
44111 find them.
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1111 The hard work of responding to David’s story to bring about change
2 in organisations, or processes to advance an inclusive society, falls to the
3 reader. Living with impairment in a disabling world is no joke, and delivery
4 on the right to an ordinary life produces a terrifying amount of anxiety
5 for the vast majority of service providers. To work to advance David’s
6 right to an ordinary life, in the target-driven and commissioning culture
7 that characterises service provision in the UK, requires readers to have
8 high expectations of themselves and those with whom they work. The
9 story won’t achieve anything on its own; it requires readers:
1 to ‘see’ that things can be better and to trust that those around them
2 – despite much evidence to the contrary – with a bit of help from
3111 the social model, with its emphasis on breaking down the barriers
4 which create exclusion, can and will change their practice and improve
5 their game.
6 (Dunn, 2004)
8 The telling of David’s story and its analysis attempt to achieve just this.
9 It identifies prospects for more enabling responses to the experience of
20111 impairment, and urges readers to listen to and act on what disabled people
1 are saying about the support that they want. It may reveal something of
2 the actuality of David’s life, illustrate the processes by which he was
3 disabled, and go some way towards demystifying the problematic rela-
4 tionship between community care and disability politics. It might open
5 up questions about everyday understandings of the ‘able’ body, it might
6 inspire a willing practitioner to reconceptualise the way in which they
7 link impairment to social roles and behaviour, it might encourage critical
8 reflection on the extent to which ideas about how people with impair-
9 ments continue to be controlled by non-disabled people in the twenty-first
30111 century. Whether it can do any of this ultimately depends on the reader.
1 The only thing to say with certainty is that engaging in life story projects
2 makes a massive impact on the researcher. Researching and writing this
3 small part of David’s life has left me with a sense of deep gratitude to
4 him for helping to make the world a more enabling place to be. It has
5 allowed me to ‘give sorrow words’ (William Shakespeare, Macbeth, Act
6 IV) and taught me that storytelling has an important role to play in
7 dismantling the myths that turn impairment into personal tragedy.
‘It is like that.’ Resonating stories – Peter Clough
1 What are these stories for? What are they designed to do? In the case of
2 Frank each reader is a unique ‘audience’ – who takes his/her own lessons
3 from the story. Frank is a story for any reader who chooses to seek to
44111 learn lessons. It is a story designed to provoke something of the self in
184 A/Effecting

1111 the reader. Many people keep a notebook, save old letters, have some-
2 thing to say about a family photograph or two, are intrigued about that
3 ‘gap’ in family history which remains unmentioned but which – in some
4 way – exists in the collective consciousness. ‘Something happened’ but we
5 don’t really know what. Frank is that kind of story.
6 If we are arguing for the use of narrative in research reports there has
7 to be a critical questioning of the purpose of such accounts. We must
8 ask: Who are these stories for? What effect do the stories have on whom?
9 The use of narratives and fictions in social science research makes it
1011 possible to render the lives of others in such a way that others might
1 access something of the raw truths of their lives. Conventional research
2 reports (often) effectively render out the personal. Their genre (usually)
3 requires a sort of sanitisation. Lives and difficulties are disinfected and
4 presented ‘steam-cleaned’, and – though creased and worn – they are
5 offered up to the reader in a relatively painless way. These are lives served
6 up with the appropriate dosage of painkiller to make things easier on the
7 reader. Such reports render data analysed and dosed with the morphine
8 of refereed publication.
9 There is an important place for such writing and for such accounts,
20111 but narrative and fictional accounts of lives lived are, arguably, best
1 presented as stories such that others can ‘read into’ and ‘read off’ them.
2 In such situations the audience does the greater work – and they can
3 succeed in that work only if the author has created a work that confronts
4 the reader with the difficulties of lives laid bare, a work which challenges,
5 confronts and provokes. At their best, narrative research reports in the
6 form of life stories – stripped from the structure and protections of the
7 traditional genre of research report – demonstrate the actualities of life.
1 Audiences often occupy a silent – perhaps sinister – place in social scien-
2 tific research. They are often patronisingly viewed as unknowing (the ‘lay
3 audience’), equals (read ‘academic audience’) and so often passive recipi-
4 ents of the knowledge that researchers promulgate. Yet, Researching Life
5 Stories displays a host of philosophical, political, personal and theoretical
6 preoccupations of the writer – and the anticipated baggage of the audi-
7 ence – that will necessarily impact on the telling of a tale. Furthermore,
8 as we aim to embrace some key literary strategies and techniques in turning
9 to story, so the audience becomes paramount. Our view is that audiences
40111 – readers – are never naive, passive recipients of ideas. Good stories stir
1 minds and souls. We should be mindful of these potential stirrings.
Chapter 13
Policy, practice and theory in
5 life story research
3111 Introduction
We end this book with considerations that are so often at the start of
books. By now, you will have at least some idea as to how and why the
stories in Part 1 were written. In this final chapter, we present a number
of applications of the stories to our chosen fields and audiences of enquiry.
Each of us will demonstrate how our narratives contribute to thinking in
terms of theory, practice and policy. We know that researching life stories
is not writing stories for writing’s sake – though perhaps we should be
celebrating this in itself. To the reader who is left asking, ‘Okay, but what
does all this life story stuff tell us about the world?’ we hope that this
chapter at least partly answers your question. Our research preoccupa-
tions involve sociology, disability studies, feminist psychology, inclusive
education, educational policy analysis. We feel that our stories have many
things to say that are of use to these disciplines, their related practitioners
and policy makers and – crucially – those people who have allowed their
stories to be told.
1 Applying Gerry O’Toole’s story – Dan Goodley
2 Gerry says much about the contemporary policy, professional and theor-
3 etical contexts in relation to the phenomenon of learning difficulties. For
4 this chapter, I develop some analyses that I made in a seminar paper that
5 drew directly on Gerry’s story (Goodley, 2003). The focus of the seminar
6 was on disability studies, education and work. I turn now to what Gerry’s
7 story tells us about the educational and training experiences of people
8 with the label ‘learning difficulties’, as one example of the application of
9 his story, with a focus on policy, professionals, politics and theory.
3 Many people with ‘learning difficulties’ remain in some form of educational
44111 or training provision throughout their lives. The nature of lifelong learning
186 Applying

1111 and the learning society is exclusively one of segregation (Riddell et al.,
2 2001). From special schools, to learning support units, to involvement with
3 one-to-one support in mainstream schools, to adult training centres (now,
4 interestingly, termed social education centres), to group homes and shel-
5 tered workshops, people with ‘learning difficulties’ are subjected to educa-
6 tional interventions from a gamut of specialist professionals. Social and life
7 skills classes dominate (Sutcliffe and Simons, 1993); users of centres are
8 invited to partake in training for user consultation meetings (Simons, 1992);
9 sheltered employment opportunities are provided with crude learning skills
1011 identified (Nourozi, 2003). Conformity to these institutions is paramount.
1 Challenging behaviour is tackled through therapy, psychotropic drugs such
2 as Ritalin (Breggin, 1993) or, more recently, anger management classes
3 (Goodley, 2000). Education as specialist instruction reigns, and few real
4 work opportunities exist (Baron et al., 1998). Recent policy initiatives
5 develop further the case for people with ‘learning difficulties’ to be edu-
6 cated. The White Paper Valuing People (2001) sets out plans for the
7 constitution of consultation arenas such as partnership boards, people’s
8 parliaments across services and nationwide training in self-advocacy skills
9 (see the website www.viaorg.uk). These recommendations are steeped in
20111 the rhetoric of ‘training up’ unknowing people with ‘learning difficulties’.
1 This sets a worrying policy climate for people with ‘learning difficulties’.
2 Yet again, they are the recipients of well-meaning interventions, which aim
3 to school them in a host of life skills, consultation methods and, now, user-
4 representative experiences. Unlike disability legislation which has arguably
5 been ground out through consultation with representative organisations of
6 disabled people, Valuing People appears to keep the existing self-advocacy
7 movement at arm’s length: away from the real stuff of policy development.
8 Education in its broadest sense is presented as a top-down practice to be
9 formally maintained in service settings. In contrast, Gerry’s story alerts us
30111 to the ways in which education, self-knowledge and work opportunities
1 often exist despite policy interventions. While many of Gerry’s peers live in
2 closely controlled and managed educational experiences, he boasts a rich
3 life. Some of this richness is down to his involvement with a self-advocacy
4 group, where comrades such as Maddie Harrison and Gerry work together
5 to forge identities away from the policy-led contexts of group home and
6 day centre. In this sense, life stories can illuminate the private experiences
7 of forging educational and work opportunities often outside or against the
8 public policy context.
2 There is intensive professional involvement in the lives of people with
3 ‘learning difficulties’. In schools, children hit a wall of assessment
44111 bureaucracy and narrow definitions of intelligence (Ryan and Thomas,
Applying 187

1111 1980/1987). Such standards are made even harder to achieve by the deficit
2 thinking held by a host of professionals (Goodley, 1997). Moreover, as
3 Booth and Booth (1994, 1998) observe, there is a double standard of
4 professionalism. First, professional assessment is never-ending, so that
5 children and adults have their every move observed by one professional
6 or another. Second, and in contrast, even in this high-pressure situation,
7 professionals often set superhuman criteria for children and parents to
8 pass: whether it be demonstrating that one displays appropriate behaviour
9 in class (Clough, 2002), displaying a hyper-work ethic in an employment
1011 context (Nourozi, 2003), or showing that one is, incredibly, able enough
1 to parent a child (Booth and Booth, 1994). Failure to meet these criteria
2 often means separation: from classmates, from work colleagues, from one’s
3111 own children. For many disabled people, professionalisation threatens
4 identity. In terms of lifelong learning, steeped in the rhetoric of the ‘learning
5 society’, Valuing People (2001) provides initiatives that will further develop
6 the role of professionals in the lives of people with ‘learning difficulties’.
7 The move towards nationally recognised accredited qualifications or the
8 Learning Disability Awards Framework (LDAF) may seem from the outside
9 to at last be taking seriously the professionalism of working with clients
20111 with ‘learning difficulties’. Another view might be that such a move will
1 further professionalise services to the detriment of service users’ owner-
2 ship of service provision. Page and Aspis (1997) note how self-advocacy
3 is often framed in terms of what professionals can offer to people with
4 ‘learning difficulties’, rather than as processes owned and developed by
5 people with ‘learning difficulties’. Bhavnani (1990) criticises this view of
6 empowerment: the powerful giving some power back to the powerless.
7 The problem with this, she notes, is that often only some power is given
8 back (if any at all). Professional power brings with it a number of dilemmas.
9 Indeed, key concerns of the disability movement are troubled by these
30111 recent developments in professional practice. The issue of direct payments
1 is somewhat complicated for people with ‘learning difficulties’ due to the
2 ways in which professionals are consistently embedded in their daily life
3 experiences. Choosing professional support is anathema to many people
4 with ‘learning difficulties’. Professionalisation is an inevitable consequence
5 of being labelled as having ‘learning difficulties’. Not choosing profes-
6 sional involvement might be a more radical departure for many people
7 with ‘learning difficulties’. Questions remain about the role of profes-
8 sionals. Against this policy backdrop, Gerry’s story makes one significant
9 point – that empowerment for people with learning difficulties may often
40111 mean escape from professional gaze and surveillance. Too often, policy
1 making is based upon long-held beliefs – such as the caring nature of the
2 welfare state. Gerry reminds us that for all these policy developments,
3 the promotion of professional practice can actually hamper rather than
44111 enable self-empowerment.
188 Applying

1111 Politics
2 The self-advocacy movement challenges professional dominance and top-
3 down policy making. The maxim of this movement is speaking up for
4 oneself: demonstrating one’s competence in a culture that assumes incom-
5 petence (Dybwad and Bersani, 1996; Goodley, 2000). A culture of self-
6 help, self-empowerment and consciousness-raising is promoted by the
7 self-advocacy movement. Unlike policy making and professionalisation,
the onus is on the self-organisation of people with ‘learning difficulties’
to challenge devaluing labels, promote positive images and reject incom-
petent service provision. However, questions have been raised about the
political potency of self-advocacy. It has been criticised for being pro-
fessionally led (Page and Aspis, 1997), individually rather than collectively
focused and a creation of well-meaning professionals (Simpson, 1999).
As Page and Aspis (1997) point out, the danger for self-advocacy is that
it becomes yet another focus of an adult training centre’s curriculum: it
is depoliticised and recuperated back into traditional educational and
training initiatives. Gerry’s story reminds us, however, that the self-
9 organisation of oppressed groups can lead to the development of new
20111 social movements. While it is only right to remain critical of develop-
1 ments in ‘self-empowerment’ – particularly when well-meaning others are
2 calling the shots – we must keep in mind the significant impact that such
3 groups can have on identities. Perhaps Gerry’s story is a testimony to the
4 power of self-organisation on the part of people with learning difficulties.
6 Theory
8 Gerry’s story says a lot about the construction of versions of humanity.
9 His tale could be seen as a social constructionist one (Burr, 1995): where
30111 identity, personhood and psychology are constructed through the rela-
1 tionships he has with other people (particularly professionals), institutions,
2 knowledge systems and socio-cultural structures. His story contributes to
3 recent work on the social construction of learning difficulties (e.g. Ferguson
4 et al., 1992; Whittemore et al., 1986) and the social construction of
5 impairment in disability studies (Hughes and Paterson, 1997; Goodley,
6 2001). Rather than viewing people so labelled as having some biological,
7 individualised and tragic condition, Gerry alerts us to the ways in which
8 social theory should illuminate the construction of ‘learning difficulties’.
9 His story, then, is a resource contributing to general constructionist and
40111 constructivist writing in the social sciences. Furthermore, Gerry demon-
1 strates the resilience that exists in the face of such constructions: struc-
2 turalism is not the dominant understanding – resistance is.
Applying 189

1111 Applying Colleen’s story – Rebecca Lawthom

2 Colleen’s story (perhaps because it is ‘real’) has a plethora of potential
3 links to theory and practice. Historically, it tells us much about gender,
4 career and expectations. Childcare and caring generally feature in the plot.
5 From a contemporary perspective, lifelong learning, lesbian identity and
6 feminism feature. Here we explore Colleen’s story and its contribution to
7 theory and links with policy.
1011 Theory
1 Rich links are present in Colleen’s telling of the story. A key contribu-
2 tory arena is that of feminist theory. Feminism has had much to say and
3111 offer to a debate about gender but it is questionable how much of the
4 theory reaches everyday women (outside of academia). Reay (1998) talks
5 of the paucity of work that considers working-class women and their
6 experiences within feminist literature, and Colleen’s story sheds light
7 on this rather typical life history. Gender cannot be a homogenous cate-
8 gory and Colleen’s story is fractured by both class (Ussher, 1997) and
9 sexuality. A diverse literature now focuses on and gives voice to ‘other’
20111 sexualities – ‘queer’, bisexual, lesbian and gay identities. Colleen’s
1 upbringing sees alternative and non-dominant sexualities as necessarily
2 ‘other’; thus her coming out of the dominant heterosexual marriage into
3 a lesbian relationship is atypical and ‘strange’ to those around her.
4 Exploring people in situ, within contexts, seems important if we are to
5 advance theory about non-dominant groups.
6 The work and career history of Colleen is also a story about self-esteem,
7 expectations, confidence and, of course, gender. The intersection of work
8 and family is rarely viewed through a gendered lens (Lawthom, 2000).
9 The expectations for women and career were historically limited and
30111 Colleen’s story writes this large. However, while the gender wagon rolls
1 on and girls now outperform boys at almost every compulsory level of
2 education (in the UK), what are the implications? Salary differentials and
3 glass ceilings are still in place within workplace settings. Patterns of
4 employment are still feminised, with women located in particular sectors.
5 Girls may well be achieving potential within schools, but the politics of
6 organisations, set against a wider societal context of patriarchy, make
7 career equality impossible (Nicholson, 1996). Women, like Colleen, work
8 in paid arenas and still continue to do most of the domestic chores.
9 Theoretically, the psychology of workplaces (organisational/occupational/
40111 work psychology) has little to say about this domain. Feminists have
1 written widely about promotion and difference in organisations and
2 cultures (e.g. Alimo-Metcalf, 1994). The issue of discrimination is now
3 rarely heard in these ‘post-feminist’ times, but difference still exists. A
44111 more insidious practice, that of covert discrimination, makes it difficult
190 Applying

1111 for women to manage home and work interfaces successfully, without
2 ‘giving the game away’. Colleen’s story tells us much about ways in which
3 women manage childcare, work and family commitments. Historically,
4 working women were less visible and less vilified (the ‘bad mother’
5 discourse). In contemporary society, the provision for childcare has clearly
6 increased and improved, but have the gender relations? Women perhaps
7 now work on top of domestic work, blurring the boundaries between
8 paid and unpaid work. Brannen (2000) has talked of the need for an
9 informed discussion on defining care and relationships.
1011 In the work–family–life balance literature, the metaphor of a scales is
1 useful to show how one manages work and family pressures. More recent
2 literature has erased balance and instead talks of work–life integration,
3 a seamless integration between public and private arenas providing
4 maximum benefit for all. Colleen’s complex mosaic of gender, work, rela-
5 tionship and identity issues means that theories proposed in one arena
6 (for example, occupational psychology) need to be more inclusive in their
7 understanding. Boundaries between home and work, public and private,
8 are less evident and theory needs to mirror this successfully.
2 Colleen’s upbringing, educational experience and subsequent career change
3 provide rich fodder for policy makers. Stories need to be understood in
4 the context of time, and thus contemporary policies take up many of these
5 issues. Educationally, the removal of the tiered educational access around
6 the ‘eleven-plus’ should mean more equal access for all. Sadly, in certain
7 areas, the selection has been maintained and education becomes a
8 commodity to be seized upon alongside ‘good housing’ in ‘nice areas’.
9 Even in areas where selection at age eleven does not happen, other
30111 initiatives have raised public consciousness about ‘good schools’. The publi-
1 cation of league tables, alongside labels such as ‘beacon’ schools, continues
2 to create a tiered system. Competition now happens between parents
3 fighting for access to quality education. For Colleen, some of the initia-
4 tives occurring now such as Excellence/Challenge and the widening
5 participation agenda may well benefit children from socially disadvan-
6 taged areas. Expectations and self-esteem are now firmly on the educational
7 agenda to widen access.
8 There is also much implied change regarding class status. What consti-
9 tutes work and how career provision happens are important themes.
40111 Colleen is an advocate for lifelong learning – age is unimportant and you
1 can learn things in later life (or build/develop skills already utilised in life
2 experience). Women’s participation in the labour force has grown hugely
3 and Colleen’s story highlights the way in which training can be a formalised
44111 routine or concretised ability:
Applying 191

1111 Having come from the background I have come from, it is almost
2 like you don’t have to go to the North Pole to know it is cold, but
3 I think, as a mature student, and now working, I think, I feel I have
4 got a lot more to offer than someone straight out of school. Because
5 when you are dealing with families you just need to be so aware of
6 what is going on other than what you can see, you know, that it is
7 not always visible, is it?
9 The idea of learning being for all and a lifelong process emphasises the
1011 opportunity to learn across the life span. Colleen’s experience supports
1 this as a useful policy, as she successfully retrained, graduated and is now
2 in employment. The timing of this for Colleen (when children were adoles-
3111 cent) suggests that childcare is still an issue. Many of the schemes which
4 should give incentives to work are failing. The recent working family tax
5 credit difficulty (and administrative problems) has left many women with
6 no money in the short term to support childcare. Moreover, few tax bene-
7 fits and expensive childcare make working life difficult. Whilst maternity
8 benefits have changed slightly, by standards in other countries in the
9 European Community, the UK is a poor provider (Brannen et al., 2002).
20111 This policy backdrop will not enable women to flexibly work and
1 contribute to the economy – despite the fact that more women (in the
2 UK) now work than ever before. Women’s intermittent participation in
3 the workforce (due to having and caring for children) also problematises
4 career and promotion opportunities.
5 Joined-up policies that knit together caring provision (for all) with work
6 flexibility would do much for gender politics. Unpaid and invisible caring
7 within the economy is mainly done by women. If girls are performing so
8 well in the educational sector, why not provide more flexibility around
9 employment and parenthood?
Applying David’s story – Michele Moore
3 What is clear to me now, having told David’s story and attempted various
4 explanations of what it says and why it was written, is that it can contribute
5 to thinking about theory, practice and policy relating to support offered
6 to disabled people and their families. ‘Material circumstances produce
7 prose’ (Steedman, 1992) and any attempt to describe these material circum-
8 stances, however inept, renders experience more tangible. Challenges
9 relating to independent living and personal assistance for young men with
40111 high-level spinal cord injury are clear from David’s story, not unques-
1 tionable but quickly recognisable, and they can be related to the experience
2 of disabled people more generally. Applying David’s story to disability
3 theory and research, and to policy and practice issues, could alter some
44111 of the relations that produce and reproduce disablement.
192 Applying

1111 The story functions to make clear the extent to which we are operating
2 within a theoretical framework of struggle – a theme which has resonance
3 in previous chapters. Characteristic struggles, between aspirations of
4 disabled people, academics and practitioners can be identified in the story.
5 The struggle between advocates of the social model of disability and those
6 committed to a medical perspective is self-evident. The medical model is
7 overtly challenged and further shamed, but theoretical questions might
8 also be raised about the adequacy of the social model of disability for
9 explaining David’s experience, and about the relative importance of
1011 psychological determinants of his response to social pressures. The
1 complexity of ‘social’ and ‘psychological’ interactions remains a shadowy
2 and undertheorised area of debate and consequently the boundaries
3 between appropriate resistance and pathologisation can easily be manipu-
4 lated. Removing the barriers to an ordinary life would only in part have
5 lessened the pain and anger David felt at his exclusion. Veck (2002)
6 discusses the place of psychological responses to exclusion; it is possible
7 that many of the tensions which built up in David’s life could be explored
8 further by engaging with a disability research paradigm that expands
9 the orthodox features of the social model of disability to incorporate the
20111 contingent nature of social relations (see Scott-Hill, 2002).
1 At the levels of policy and practice, the story shows that power and
2 control over one’s own life is key to positive outcomes following spinal
3 injury. This finding is far from new, but David’s story adds further to the
4 evidence base that seeks to advance a policy agenda for independent living.
5 His story exposes the destructive power of discourses which limit the
6 amount of control disabled people have over their own lives and suggests
7 that the beneficiaries of this limiting of control are service providers who
8 have a less arduous role if attention can be shifted away from what
9 disabled people want and confined to the realms of what services can
30111 offer with least possible effort and resources. There is currently scope to
1 feed these messages into relevant policy-making fora such as the Disability
2 Rights Commission, collecting evidence to support a campaign for a right
3 to independent living.
4 Things have moved on. National policy development relating to inde-
5 pendent living is coming into place but still needs to be backed up by a
6 direct payments scheme that will ensure options for independent living are
7 available on the basis of equality. These objectives are embedded in the aims
8 of the newly established National Centre for Independent Living (NCIL),
9 and progress in respect of these commitments could mean that the belit-
40111 tling and undignified pleading that characterised the depressing events of
1 June recounted in David’s story might be avoided in similar discussions
2 today. On the basis of stories currently being collected about the lives of
3 people with spinal injuries, however, I doubt it. What is becoming clear
44111 through Cowe’s (ongoing) work is that for many spinal injured people, the
Applying 193

1111 ‘seven core areas of need’ – information, counselling, housing, technical

2 aids, personal assistance, transport and access – identified over twenty years
3 ago as an agenda for disabled people wishing to live independent lives
4 remain unmet (Davis, 1981). There have been policy and political changes
5 for the better since David’s time. Under new regulations that came into
6 effect in April 2003 councils are now obliged by law to offer direct pay-
7 ments to every eligible user. An Independent Living Association in the
8 region of England in which David lived and died is now actively exploring
9 ways of making independent living a reality for disabled people living in
1011 the county, but the National Centre for Independent Living still advises dis-
1 abled people that ‘lots of different people might block your progress’
2 (www.ncil.org.uk). There are more stories to be told.
3111 And so in developing and advocating life story research we are faced
4 with hard questions about when a piece of life story research can be
5 drawn towards conclusion. From David I have learned that a story does
6 not end when it is finished. Presenting his story might effect some small
7 change. But it leaves unnecessary suffering uppermost in my mind.
Applying Frank – Peter Clough
1 ‘Frank’ was desperate to have his story told. And some of his experiences
2 in working in social/educational difficulty must have held in them some-
3 thing worth telling. But ‘Frank’ was more interested in himself, his identity
4 and his inheritance which – I think – he sought as justification for his
5 exit from teaching at 48.
7 he had worked for some years as an auxiliary in a mental hospital –
8 this was the early seventies – then teaching part-time in a borstal before
9 joining a school for ‘maladjusted’ boys as a houseparent. By thirty-one
30111 he was deputy headteacher, and got his own school – one of the largest
1 residential places in the country for what were now emotionally and
2 behaviourally disturbed boys – at thirty-four. At forty-eight he tore it
3 all up, and at fifty-one he phoned me to ask: would I write his story?
5 What lies behind Frank is a series of questions about teacher identity.
6 ‘Frank’ wants to find an identity in a publication which features some-
7 thing of him. He’s over – at least in terms of his professional life in
8 educational difficulty. But he is desperate to reclaim some of the ‘glory’
9 of his days as a headteacher. He was one of those heads in one of those
40111 schools that everyone knew about. Teachers (and other heads) visited to
1 find out ‘how they did it’. ‘Frank’ was a regular ‘turn’ on the platforms
2 of LEA and regional conferences. But he lost it. Much of this story revolves
3 around him contemplating his own self, his roots, religion, sexuality, his
44111 relationship with his father.
194 Applying

1111 His story is yet another story ‘behind the headlines’. It takes off from
2 a previous story of Rob whose assault on a pupil resulted in dismissal
3 and newspaper headlines:
5 When Rob Joynson was forty-three he came into school on a Tuesday
6 morning much as usual; and passing at 10.40 by a Maths class taken
7 by Michelle G. – a probationer of twenty-three – and hearing terrible
8 noise; and seeing through the window a boy at the back fetch a fat
9 gob on Michelle’s back as she walked down the aisle smiling smiling
1011 too, too nervously, her hands doing ‘down, please: down, down’ at
1 the noise; seeing this marbled yellow gob on Michelle’s ordinary blouse
2 on her decent body, Rob Joynson rushed into the room and to the
3 back and took the boy – Mark something – by the ears, both ears,
4 and pulled him up out of – through almost – his desk and repeat-
5 edly smashed his head against a chart of tessellations on the wall.
6 And Michelle pulled at him from behind and screamed, and he twisted
7 the boy down by his ears and pushed at him with his foot, kicking
8 until he was quite under the desk. Then Rob started to cry and there
9 was terrible silence – where there had been terrible noise – but for
20111 Rob searching for breath to fuel the small fearful wails which broke
1 from him. When – thank God – someone laughed finally, unable to
2 stay with the pain a moment longer, Rob fled the room.
3 (Clough, 2002, p. 37)
5 These two stories emanate from the policy context of the late 1990s
6 where (some) teachers’ lives were being wrecked by the policy and prac-
7 tices of inspection, league tables, achievement targets, diminishing resources
8 and lack of professional development. The point at which the story can
9 be applied to our understanding of policy, education, professionalism and
30111 teacher identity is that ‘Frank’ burnt out – in some way – or simply gave
1 up because he had not yet understood himself. There was no ‘main event’
2 for ‘Frank’ – nothing as dramatic as what he had read in the story
3 of Rob, but ‘Frank’ still ‘tore it up’. Something here reaches into the
4 newspaper report of a headteacher, ‘Mr Harries’, who was reported to
5 have suffered a breakdown due to his Ofsted experience, which the TES
6 reported thus:
8 Mr Harries’ life now lies in tatters. He has contemplated suicide; he
9 has received psychiatric counselling; he is still taking antidepressants
40111 for the nervous breakdown . . . Mr Harries, 47, a father of two, is
1 unable to work again. His doctor diagnosed reactive depression and
2 post-traumatic stress disorder. He was forced to take early retirement
3 due to ill health from his job as headteacher.
44111 (Mendick, 1998)
Applying 195

1111 ‘Frank’ was one of the many professionals who crept away quietly. Just
2 simply gave up. And the story of Frank is a story of him trying to justify
3 his opt-out. It digs behind the event or the action and seeks to find the
4 aspects of self which are at work and which may be responsible for more
5 public aspects of lives.
9 We are often asked as life story researchers, ‘But what is the point of
1011 storytelling?’ When asked what we do with our lives, we would probably
1 dredge up more respectable titles of researcher, psychologist, policy analyst
2 or academic. Storyteller still smacks of the last period of primary school,
3111 still lacks seriousness in the adult world. But we hope that Researching
4 Life Stories has contributed in some small way to make telling stories a
5 respectable venture. Stories are more than individual tales. They are the
6 products of complicated research relationships. They are imbued with
7 theory, with practice and policy implications and with humanity. They
8 say so much about society that the preoccupation with scientific methods
9 and quantitative analysis of much human and social science seems ever
20111 more redundant and archaic. Having said these things, perhaps our only
1 hope is that this book has made the case for the use of life stories and
2 illuminated some of the fascinating research journeys that can occur
3 along the way. What is the point of storytelling? The points are in the
4 telling of stories.
3111 Abberley, P. (1987) The concept of oppression and the development of a social
4 theory of disability, Disability, Handicap & Society, 2 (1), 5–19.
5 Alimo-Metcalf, B. (1994) Waiting for fish to grow feet! In M. Tanton (ed.), Women
6 in Management: A Developing Presence. London: Routledge.
7 Angrosino, M. V. (1994) On the bus with Vonnie Lee: Explorations in life history
8 and metaphor, Journal of Contemporary Ethnography, 23 (April), 14–28.
9 Armstrong, F. and Moore, M. (eds) (2004) Action Research for Inclusive Education:
20111 Changing places, changing practices, changing minds. London: RoutledgeFalmer.
Assiter, A. (1996) Enlightened Women: Modernist Feminism in a Feminist Age.
London: Routledge.
Atkinson, D. and Williams, F. (eds) (1990) ‘Know me as I am’: An Anthology of
3 Prose, Poetry and Art by People with Learning Difficulties. Sevenoaks, Kent:
4 Hodder & Stoughton in association with the Open University and MENCAP.
5 Atkinson, R. (1998) The Life Story Interview. London: Sage, 1998.
6 Baker, R. (1995) Life with mother. In W. Zinsser (ed.), Inventing the Truth: The
7 art and craft of memoir. Boston: Houghton Mifflin.
8 Bannister, D. (1977) New Perspectives in Personal Construct Theory. London:
9 Academic Press.
30111 Bannister, P., Burman, E., Parker, I., Taylor, M. and Tindall, C. (1994) Qualitative
1 Research Methods in Psychology: A Research Guide. Buckingham: Open
2 University Press.
3 Barnes, C. (1997) Disability and the myth of the independent researcher. In
4 L. Barton and M. Oliver (eds), Disability Studies: Past, Present and Future.
5 Leeds: Disability Press.
6 Barnes, C. (2003) What a difference a decade makes: Reflections on doing ‘eman-
cipatory’ disability research, Disability & Society, 18 (1): 3–18.
Baron, S., Riddell, S. and Wilkinson, H. (1998) Best burgers? The person with
learning difficulties as worker. In T. Shakespeare (ed.), The Disability Reader.
9 London: Cassell.
40111 Belenky, M. F., Clinchy, B. M., Goldberger, N. R. and Tarule, J. M. (1986)
1 Women’s Ways of Knowing: The development of self, voice and mind. New York:
2 Basic Books.
3 Bertaux, D. (ed.) (1981) Biography and Society: The Life History Approach in
44111 the Social Sciences. Beverly Hills, CA: Sage.
198 References

1111 Billig, M. (1996) Arguing and Thinking: A rhetorical approach to social psychology
2 (2nd edn). Cambridge: Cambridge University Press.
3 Bhavnani, K. (1990) What’s power got to do with it? Empowerment and social
4 research. In I. Parker and J. Shotter (eds), Deconstructing Social Psychology.
5 London: Routledge.
Bird, L. (1999) Towards a more critical educational psychology, Annual Review
of Critical Psychology, 1: 9–23.
Boal, A. (1979) The Theatre of the Oppressed. London: Pluto Press.
Boal, A. (1992) Games for Actors and Non-Actors. London: Routledge.
9 Boal, A. (1995) The Rainbow of Desire. London: Routledge.
1011 Bogdan, R. and Taylor, S. (1976) The judged not the judges: An insider’s view
1 of mental retardation, American Psychologist, 31: 47–52.
2 Bogdan, R. and Taylor, S. (1982) Inside Out: The Social Meaning of Mental
3 Retardation. Toronto: University of Toronto Press.
4 Booth, T. and Booth, W. (1994) Parenting under Pressure: Mothers and Fathers
5 with Learning Difficulties. Buckingham: Open University Press.
6 Booth, T. and Booth, W. (1998). Growing Up With Parents Who Have Learning
7 Difficulties. London: Routledge.
8 Borland, K. (1991) “That’s not what I said”: interpretive conflict in oral narra-
9 tive research. In S. B. Cluck and D. Patai (eds), Women’s Words: The feminist
20111 practice of oral history. New York: Routledge.
Bowker, G. (1993) The age of biography is upon us, Times Higher Education
Supplement, 9, 8 January.
Bradbury, M. (1975) The Novel Today. Harmondsworth: Penguin.
Braginsky, D. and Braginsky, B. (1971) Hansels and Gretels: Studies of Children in
4 Institutions for the Mentally Retarded. New York: Holt, Rinehart and Winston.
5 Brannen, J. (2000) Mothers and fathers in the workplace: The UK debate. In
6 L. Haas, P. Hwang and G. Russell (eds), Organizational Change and Gender
7 Equity. London: Sage.
8 Brannen, J., Nilsen, A., Lewis, S. and Smithson, J. (eds) (2002) Young Europeans,
9 Work and Family Life: Futures in transition. London: Routledge.
30111 Breggin, P. (1993) Toxic Psychiatry. New York: St Martin’s Press.
1 Brown, L. M. and Gilligan, C. (1992) Meeting at the Crossroads: Women’s
2 Psychology and Girls’ Development. Cambridge, MA: Harvard University Press.
3 Brown, L. M. and Gilligan, C. (1993). Meeting at the crossroads: Women’s
4 psychology and girls’ development, Feminism and Psychology, 3: 11–35.
5 Brown, L. M., Debold, E., Tappan, M. and Gilligan, C. (1991) Reading narra-
tives of conflict and choice for self and moral voices: A relational method. In
M. William and J. Gewirtz (eds), Moral Behaviour and Development, Volume
2, Research. Hilldale, NJ: Lawrence Erlbaum.
Brown, L. M., Tappan, M. B., Gilligan, C., Miller, B. A. and Argyris, D. E. (1989)
9 Reading for self and moral voice: A method for interpreting narratives of real-
40111 life moral conflict and choice. In M. Packer and R. Addison (eds), Entering the
1 Circle: Hermeneutic investigation in psychology. Albany: SUNY Press.
2 Brown, T. and Jones, L. (2002) Action Research and Postmodernism: Congruence
3 and Critique (Conducting Educational Research). Buckingham: Open University
44111 Press.
References 199

1111 Burman, E. and Parker, I. (eds) (1993) Discourse Analytic Research: Repertoires
2 and Readings of Texts in Action. London: Routledge.
3 Burman, E. (ed.), Alldred, P., Bewley, C., Goldberg, B., Heenan, C., Marks, D.,
4 Marshall, J., Taylor, K., Ullah, R. and Warner, S. (1996) Challenging Women:
Psychology’s Exclusions, Feminist Possibilities. Buckingham: Open University
Burr, V. (1995) An Introduction to Social Constructionism. London: Routledge.
7 Butler, J. (1990) Gender Trouble: Feminism and the Subversion of Identity. New
8 York: Routledge.
9 Butler, J. (1993) Bodies that Matter: On the Discursive Limits of ‘Sex’. New York
1011 and London: Routledge.
1 Chamberlayne, P., Bornat, J. and Wengraf, T. (eds) (2000) The Turn to
2 Biographical Methods in Social Science: Comparative Issues and Examples.
3111 London: Routledge.
4 Charmaz, K. (1995) Grounded theory. In J. A. Smith, R. Harré and L. V.
5 Langenhove (eds), Rethinking Methods in Psychology. London: Sage.
Cheston, R. (1994) The accounts of special education leavers, Disability & Society,
9 (1): 58–69.
Cicourel, A. V. (1980) Three models of discourse analysis: The role of social struc-
8 ture, Discourse Processes, 3 (2): 101–131.
9 Clough, P. (1995) Problems of identity and method in the investigation of special
20111 educational needs. In P. Clough and L. Barton (eds), Making Difficulties: Research
1 and the Construction of Special Educational Needs. London: Paul Chapman.
2 Clough, P. (1998) Differently articulate? Some indices of disturbed/disturbing
3 voices. In P. Clough and L. Barton (eds), Articulating with Difficulty: Research
4 Voices in Inclusive Education. London: Paul Chapman.
5 Clough, P. (2002) Narratives and Fictions in Educational Research. Buckingham:
6 Open University Press.
Clough P. and Corbett, J. (2000) Theories of Inclusive Education. London:
Clough, P. and Nutbrown, C. (2002) A Students’ Guide to Methodology: Justifying
9 enquiry. London: Sage
30111 Corbett, J. (1998). Promoting an Inclusive Culture in a Climate of Fear and Stress.
1 Paper presented at the Policy, Failure and Difference Seminar, Ranmoor Hall,
2 Sheffield.
3 Corker, M. (1997) Deaf and Disabled, or Deafness Disabled?: Towards a Human
4 Rights Perspective. Buckingham: Open University Press.
5 Corker, M. and Shakespeare, T. (2002) Disability/Postmodernity: Embodying
6 Disability Theory. London: Cassell.
7 Cowe, H. (ongoing) Living with personal assistance. PhD research University of
Davies, J. and Watson, N. (2002) Countering stereotypes of disability: Disabled
children and resistance. In M. Corker and T. Shakespeare (eds), Disability/
40111 Postmodernity: Embodied Disability Theory. London: Continuum.
1 Davis, K. (1981) 28–38 Grove Road: Accommodation and care in a community
2 setting. In A. Brechin, P. Liddiard and J. Swain (eds) (1981) Handicap in a
3 Social World. London: Hodder & Stoughton.
44111 Deacon, J. (1974) Tongue Tied. London: MENCAP.
200 References

1111 Denzin, N. and Lincoln, Y. (eds) (1994) Handbook of Qualitative Research.

2 Thousand Oaks, CA: Sage.
3 Denzin, N. and Lincoln, Y. (eds) (1998) The Landscape of Qualitative Research.
4 Thousand Oaks, CA: Sage.
5 Derrida, M. (1994) Spectres de Marx. Paris: Galilée.
Dexter, L. A. (1956) Towards a sociology of the mentally defective, American
Journal of Mental Deficiency, 61: 10–16.
DHS, Disability Handicap & Society (1992) Special Issue: Researching Disability,
Disability, Handicap and Society, 7 (2). (Renamed Disability & Society in
9 1993.)
1011 Dick, R. (1990) Convergent Interviewing, version 3. Brisbane: Interchange.
1 Dick, R. (2002) Grounded theory: a thumbnail sketch. Online at http://www.
2 scu.edu.au/schools/gcm/ar/arp/grounded.html.
3 Didion, J. (1968) Slouching Towards Bethlehem (2001 edn). London:
4 HarperCollins.
5 Dingham, H. F. (1968) A plea for social research in mental retardation, Journal
6 of Mental Deficiency, 73 (1): 2–4.
7 Doerr, H. (2002) (Un)Collected Short Stories. London: Faber.
8 Du Bois, B. (1983) Passionate scholarship: Towards more creative methods for
9 collecting data on gender and household labour. In L. Morris and S. Lyon (eds),
20111 Gender Relations in the Public and the Private. London: Macmillan.
Duffy, K. G. and Wong, F. Y. (1996) Community Psychology. Boston: Allyn and
Dunn, K. (2004) Challenging behaviour: Ours not theirs. In F. Armstrong and
M. Moore (eds), Action Research for Inclusive Education: Changing places,
4 changing practices, changing minds. London: RoutledgeFalmer.
5 Dybwad, G. and Bersani, H. (eds) (1996) New Voices: Self-advocacy by People
6 with Disabilities. Cambridge, MA: Brookline.
7 Eagleton, T. (1983) Literary Theory. London: Macmillan.
8 Edgerton, R. (1976) Deviance: A Cross-cultural Perspective. London: Benjamin/
9 Cummings.
30111 Edgerton, R. and Bercovici, S. (1976) The cloak of competence: Years later,
1 American Journal of Mental Deficiency, 80 (5): 485–497.
2 Edgerton, R. B. (1967) The Cloak of Competence: Stigma in the Lives of the
3 Mentally Retarded. Berkeley, CA: University of California Press.
4 Edgerton, R. B. (1984a) Introduction. In R. B. Edgerton (ed.), Lives in Process:
5 Mentally Retarded Adults in a Large City. Washington, DC: Monograph #6,
American Association on Mental Deficiency.
Edgerton, R. B. (1984b). The participant-observer approach to research in mental
retardation, American Journal of Mental Deficiency, 88 (5): 498–505.
Erben, M. (ed.) (1998) Biography and Education. London: Falmer.
9 Erlandson, D. A., Harris, E. L., Skipper, B. L. and Allen, S. D. (1993) Doing
40111 Naturalistic Inquiry. Newbury Park, CA: Sage.
1 Fairclough, N. (1989) Language & Power. London: Longman.
2 Ferguson, P. M., Ferguson, D. L. and Taylor, S. J. (eds) (1992) Interpreting
3 Disability: A Qualitative Reader. New York: Teachers College Press.
44111 Feyerabend, P. (1975) Against Method. London: Verso.
References 201

1111 Feyerabend, P. (1978) Science in a Free Society. London: Verso/NLB.

2 Fido, R. and Potts, M. (1989) ‘It’s not true what was written down!’ Experiences
3 of life in a mental handicap institution, Oral History, (Autumn): 31–35.
4 Finch, J. (1984) It’s great to have someone to talk to: The ethics and politics of
5 interviewing women. In C. Bell and H. Roberts (eds), Social Researching: Politics,
problems, practice. London: Routledge & Kegan Paul.
Fine, M. (1992) Disruptive Voices: The possibilities of feminist research. Ann Arbor:
MI: University of Michigan Press.
Foucault, M. (1973a) The Birth of the Clinic: An Archaeology of Medical
9 Perception, trans. A. M. Sheridan. New York: Pantheon Books.
1011 Foucault, M. (1973b) Madness and Civilisation: A History of Insanity in the Age
1 of Reason, trans. R. Howard. New York: Vintage/Random House.
2 Foucault, M. (1977) Discipline and Punish: The Birth of the Prison, trans. R.
3111 Howard. New York: Pantheon Books.
4 Foucault, M. (1980) Power/Knowledge. Brighton: Harvester Press.
5 Foucault, M. (1983) The subject and power. In H. L. Dreyfus and P. Rabinov (eds),
6 Michael Foucault: Beyond Structuralism and Hermeneutics. Chicago: University
7 of Chicago Press.
8 Glaser, Barney G. (ed.) (1995) Grounded Theory 1984–1994, Volume 2. Mill
9 Valley, CA: Sociology Press.
20111 Glaser, Barney G. (1998) Doing Grounded Theory: Issues and discussions. Mill
Valley, CA: Sociology Press.
Glaser, Barney G. and Strauss, Anselm L. (1967) The Discovery of Grounded
Theory: Strategies for qualitative research. Chicago: Aldine.
Goffman, E. (1959) Presentation of Self in Everyday Life. Garden City, New York:
4 Doubleday.
5 Goffman, E. (1963) Stigma: Some Notes on the Management of Spoiled Identity.
6 Harmondsworth: Penguin.
7 Goodley, D. (1997) Locating self-advocacy in models of disability: Understanding
8 disability in the support of self-advocates with learning difficulties, Disability &
9 Society, 12 (3): 367–379.
30111 Goodley, D. (1998) Stories about writing stories. In P. Clough and L. Barton (eds),
1 Articulating with Difficulty: Research Voices in Special Education. London: Paul
2 Chapman.
3 Goodley, D. (2000) Self-advocacy in the Lives of People with Learning Difficulties:
4 The Politics of Resilience. Buckingham: Open University Press.
5 Goodley, D. (2001) ‘Learning difficulties’, the social model of disability and impair-
ment: Challenging epistemologies, Disability & Society, 16 (2): 207–231.
Goodley, D. (2003) De/constructing learning difficulties: The Life Story of Gerry
O’Toole. In C. Barnes (ed.), Exploring the Social Model: education and work.
Leeds: Disability Press.
9 Goodley, D., Lawthom, R., Tindall, C., Tobbell, J. and Wetherell, M. (2002)
40111 Understanding People: Qualitative Methods. Oxford: Alden Press.
1 Goodson, I. (1992) Studying Teachers’ Lives. New York: Teachers College Press
2 and Routledge.
3 Goodson, I. and Sikes, P. (2001) Life History in Educational Settings: Learning
44111 From Lives. Buckingham: Open University Press.
202 References

1111 Gordon, T., Holland, J. and Lahelma, E. (2001) Ethnographic research in educa-
2 tional settings. In P. Atkinson, A. Coffey, S. Delamont, J. Lofland and L. Lofland
3 (eds), Handbook of Ethnography. London: Sage.
4 Griffin, C. (1989) I’m not a women’s libber but . . .: Feminism, consciousness and
identity. In S. Skevington and D. Baker (eds), The Social Identity of Women.
London: Sage.
Haraway, D. (1991) Simians, Cyborgs, and Women: The Reinventions of Nature.
7 New York: Routledge.
8 Harding, S. (1986) The Science Question in Feminism. London: Routledge.
9 Harding, S. (1992) Is there a feminist method? In S. Harding (ed.), Feminism and
1011 Methodology. Bloomington, IN: Indiana University Press.
1 Hedges, W. (2000) Using Deconstruction to Astonish Friends & Confound Enemies
2 (In Two Easy Steps!). Online at http://www.sou.edu/English/Hedges/Sodashop/
3 RCenter/Theory/Howto/decon.htm.
4 Heidegger, M. (1971) On the Way to Language, trans. P. Hertz. New York:
5 Harper & Row.
Heller, K., Price, R., Reinharz, S., Riger, S. and Wandersman, A. (1984) Psychology
and Community Change, 2nd edn. Homewood, IL: Dorsey Press.
Henriques, J., Hollway, W., Unwin, C., Couze, V. and Walkerdine, V. (1984)
8 Changing the Subject: Psychology, Social Regulation, and Subjectivity. London:
9 Routledge.
20111 Henwood, K. L. and Pidgeon, N. F. (1992) Qualitative research and psychologic-
1 al theorising, British Journal of Psychology, 83: 97–111.
2 Hofstadter, A. (1965) Truth and Art. New York: Columbia University Press.
3 Hollway, W. and Jefferson, T. (2000) Doing Qualitative Research Differently.
4 London: Sage.
5 Homan, R. (1991) The Ethics of Social Research. Essex: Longman.
6 Hughes, B. and Paterson, K. (1997) The social model of disability and the disap-
pearing body: Toward a sociology of impairment, Disability & Society, 12 (2):
Humm, M. (1992) Feminisms: A reader. London: Prentice-Hall Europe.
9 Hunt, L. (1998) Women to women support: Lessons from an Australian case
30111 story, Patient Education and Counselling, 33 (3): 257–265.
1 Hunt, N. (1967) The World of Nigel Hunt. Beaconsfield: Darwen Finlayson.
2 Inglis, F. (1969) The Englishness of English Teaching. London: Longman.
3 Iser, W. (1971) The reading process: A phenomenological approach, New Literary
4 History, 3: 279–299.
5 Kagan, C. (2002) Making the road by walking it. Inaugural professorial lecture,
6 Manchester Metropolitan University, 30 January.
7 Kagan, C. and Lewis, S. (1989) Where’s your sense of humour? Swimming against
the tide in higher education. In E. Burman (ed.), Feminists and Psychological
Practice. London: Sage.
Kaufman, S. Z. (1988) Retarded ISN’T Stupid, Mom! Baltimore: Paul. H.
40111 Brookes.
1 Kitzinger, C. and Gilligan, C. (1994). Listening to a different voice: Celia Kitzinger
2 interviews Carol Gilligan, Feminism and Psychology, 4 (3): 408–419.
3 Klages, M. (2001) Poststructuralist Feminist theory. Online at http://www.
44111 colorado.edu/English/engl2010mk/cixous.lec.html.
References 203

1111 Korbin, J. E. (1986) Sarah: The life course of a Down’s syndrome child. In L. L.
2 Langness and H. G. Levine (eds), Culture and Retardation. Kluwer: D. Reidel
3 Publishing Company.
4 Kundera, M. (1984) The Unbearable Lightness of Being. London: Faber.
Kurtz, R. A. (1981) The sociological approach to mental retardation. In A. Brechin,
P. Liddiard and J. Swain (eds), Handicap in a Social World. Sevenoaks, Kent:
Hodder & Stoughton in association with the Open University Press.
7 Langness, L. and Levine, H. (eds) (1986) Culture and Retardation. Kluwer:
8 D. Reidel Publishing Company.
9 Lapsley, H., Nikora, L. and Black, R. (2002) ‘Kia Mauri Tau!’ Narratives of
1011 recovery from disabling mental health problems. New Zealand: Mental Health
1 Commission. Online at www.mhc.govt.nz/publications/2002/Kia_Mauri_Tau.
2 pdf.
3111 Larson, C. (1997) Representing the subject: Problems in personal narrative inquiry.
4 Qualitative Studies in Education, 10 (4): 455–470.
5 Lawthom, R. (1997) What do I do? A feminist in non-feminist research, Feminism
and Psychology, 7 (4): 533–538.
Lawthom, R. (2000) Women, stress and work; exploring the boundaries. In
J. Ussher (ed.), Women’s Health: Contemporary International Perspectives.
8 Leicester: BPS.
9 Lea, S. L. (1988) Mental retardation: Social construction or clinical reality?,
20111 Disability, Handicap & Society, 3 (1): 63–69.
1 Lofland, J. and Lofland, L. H. (1984) Analyzing Social Settings: A Guide,
2 Qualitative Observation and Analysis, 2nd edn. Canada : Wordsworth.
3 Lubbock, P. (1963) The Craft of Fiction. New York: Viking Press. Orig. pub.
4 1921.
5 Lyotard, J. (1979) The Postmodern Condition. Paris: Minuit.
6 Malinowski, B. (1922) Argonauts of the Western Specific. London: Routledge.
Mama, A. (1995) Beyond the Masks: Race, gender and subjectivity. New York:
Marx, K. (1845) Theses on Feuerbach. In K. Marx and F. Engels (eds), Selected
9 Works. London: Lawrence & Wishart.
30111 Mauthner, N. (2002) The Darkest Days of My Life: Stories of Postpartum
1 Depression. Cambridge, MA: Harvard University Press.
2 Mauthner, N. S. and Doucet, A. (1997) Reflections on a voice-centred relational
3 method: Analysis of maternal and domestic voices. In J. Ribbens and R. Edwards
4 (eds), Feminist Dilemmas in Qualitative Research: Public knowledge and private
5 lives. London: Routledge.
6 McNay, L. (1992) Foucault and Feminism: Power, gender and the self. Cambridge:
7 Polity.
Means, R. and Smith, R. (1994) Community Care: Policy and Practice. Basingstoke:
Mendick, J. (1988) A life destroyed, Times Educational Supplement, 13 May.
40111 Mercer, J. R. (1973) Labeling the Mentally Retarded: Clinical and Social System
1 Perspectives on Mental Retardation. Los Angeles: University of California Press.
2 Milbourne, L. (2002) Life at the margin: Education of young people, social policy
3 and the meanings of social exclusion, International Journal of Inclusive
44111 Education, 6 (2): 325–343.
204 References

1111 Miller, R. L. (2000) Researching Life Stories and Family Histories, London: Sage.
2 Mischler, E. (1986) Researching Interviewing: Context and narrative. Cambridge,
3 MA: Harvard University Press.
4 Mitchell, J. (1974) Feminism and Psychoanalysis. London: Penguin.
Mitroff, I. and Killman, R. (1978) Methodological Approaches to Social Science:
Integrating Divergent Concepts and Theories. San Francisco: Jossey-Bass.
Moore, M. (ed.) (2000) Insider Perspectives on Inclusion: Raising voices, raising
7 issues. Sheffield: Philip Armstrong Publications.
8 Moore, M. and Dunn, K. (1999) Disability, human rights and education in
9 Romania. In F. Armstrong and L. Barton (eds), Disability, Human Rights and
1011 Education: Cross-Cultural Perspectives. Buckingham: Open University Press.
1 Moore, M. and Skelton, J. (2000) Enabling Future Care. Birmingham: Venture
2 Press.
3 Moore, M., Beazley, S. and Maelzer, J. (1998) Researching Disability Issues.
4 Buckingham: Open University Press.
5 Morris, J. (1997) Community Care: Working in Partnership with Service Users.
Birmingham: Venture Press.
Namenwirth, M. (1989) Science seen through a feminist prism. In R. Bleier (ed.),
Feminist Approaches to Science. New York: Pergamon Press.
8 NCIL (2003) National Centre for Independent Living, www.ncil.org.uk.
9 Nicholson, P. (1996) Gender, Power and Organisations: a psychological perspec-
20111 tive. London: Routledge.
1 Nisbet, R. (1976) Sociology as an Art Form. London: Heinemann.
2 Nourozi, G. (2003) The employment experiences of people with learning difficul-
3 ties. Paper presented at the Disability Studies Conference, Lancaster, September.
4 Oakeshott, M. (1933) Experience and its Modes. Cambridge: Cambridge University
5 Press.
6 Oakley, A. (1981) Interviewing women: A contradiction in terms. In H. Roberts
(ed.), Doing Feminist Research. London: Routledge.
Ochs, E. and Capps, L. (2001) Living Narrative: Creating lives in everyday story-
telling. Cambridge, MA: Harvard University Press.
9 Ochs, E. and Jacoby, S. (1997) Down to the wire: The cultural clock of physi-
30111 cists and the discourse of consensus, Language and Society, pp. 479–506.
1 Oliver, M. (1987) Re-defining disability: Some implications for research, Research,
2 Policy and Planning, 5: 9–13.
3 Oliver, M. (1990) The Politics of Disablement. Basingstoke: Macmillan.
4 Oliver, M. (1996) Understanding Disability: From Theory to Practice. London:
5 Macmillan.
6 Oliver, M., Zarb, G., Silver, J., Moore. M. and Salisbury, V. (1988) Walking into
7 Darkness: The Experience of Spinal Cord Injury. London: Macmillan.
Oppenheim, C. (1998) An overview of poverty and social exclusion. In.
C. Oppenheim (ed.), An Inclusive Society. London: IPPR.
Orne, M. T. (1962) The nature of hypnosis: Artefact & essence, Journal of
40111 Abnormal & Social Psychology, 58: 277–299.
1 Oswin, M. (1991) Am I Allowed to Cry? A Study of Bereavement amongst People
2 Who Have Learning Difficulties. London: Souvenir Press.
3 Page, L. and Aspis, S. (1997 [Dec. 1996/Jan. 1997]) Special feature, Viewpoint,
44111 pp. 6–7.
References 205

1111 Parker, T. (1963) The Unknown Citizen. London: Hutchinson.

2 Parker, T. (1990) Life After Life: Interviews with Twelve Murderers. London:
3 Secker & Warburg.
4 Parker, I. (ed.) (1998) Social Constructionism, Discourse and Realism. London:
Plato (1963) The Republic. In E. Hamilton and H. Cairus (eds), Plato: The
Collected Dialogues. Princeton, NJ: Princeton University Press.
7 Plummer, K. (1983) Documents of Life: An Introduction to the Problems and
8 Literature of a Humanistic Method. London: George Allen & Unwin.
9 Postman, N. (1992) Technopoly: The surrender of culture to technology. New
1011 York: Knopf.
1 Potter, J. and Wetherell, M. (1987) Discourse and Social Psychology: Beyond
2 attitudes and behaviour. London: Sage.
3111 Potts, M. and Fido, R. (1991) A Fit Person to be Removed: Personal Accounts
4 of Life in a Mental Deficiency Institution. Plymouth: Northcote House.
5 Priestley, P. (1999) Disability Politics and Community Care. London: Jessica
Ramazanoglu, C. (1987) Sex and violence in academic life or you can keep a
good woman down. In J. Hannermar and M. Maynard (eds), Women, Violence
8 and Social Control. Basingstoke, Hants: Macmillan.
9 Rappaport, J. (1977) Community Psychology: Values, research, and action. New
20111 York: Holt, Rinehart, & Winston.
1 Reason, P. (ed.) (1988) Human Inquiry in Action: Developments in New Paradigm
2 Research. London: Sage.
3 Reason, P. (ed.) (1994) Participation in Human Inquiry. London: Sage.
4 Reason, P. and Hawkins, P. (1988) Inquiry through storytelling. In P. Reason
5 (ed.), Human Inquiry in Action. London: Sage.
6 Reay, D. (1998) Class Work: Mothers’ Involvement in their Children’s Schooling.
London: UCL Press.
Rennie, D. L. (2000) Grounded theory methodology as methodological hermeneut-
ics, Theory and Psychology, 10: 481–502.
9 Richardson, L. (1994). Writing: A method of enquiry. In N. K. Denzin and
30111 Y. S. Lincoln (eds), Handbook of Qualitative Research. Thousand Oaks, CA:
1 Sage.
2 Riddell, S., Baron, S. and Wilson, A. (2001) The Learning Society and People
3 with Learning Difficulties. Bristol: Polity Press.
4 Riessman, C. K (1993) Narrative Analysis, London: Sage.
5 Rimmon-Kenan, S. (2002) Narrative Fiction: Contemporary Poetics, 2nd edn.
6 London: Routledge. (Orig. pub. 1983.)
7 Robbe-Grillet, A. (1955) From Realism to Reality. Oxford: Oxford University Press.
Robinson, D. N. (2000) Paradigms and ‘the myth of the framework’: How science
progresses, Theory and Psychology, 10: 39–47.
Rose, N. (1999) Governing the Soul: The Shaping of the Private Self, 2nd edn
40111 with new Preface and Afterword. London: Free Association Books.
1 Ruddick, S. (1989) Maternal Thinking: Towards a politics of peace. Boston, MA:
2 Beacon.
3 Russell, L. M. (ed.) (1996) Dictionary of Feminist Theologies. London: John Knox
44111 Press.
206 References

1111 Ryan, J. and Thomas, F. (1980/1987) The Politics of Mental Handicap, rev. edn
2 1987. London: Free Association Press.
3 Salmon, P. (2003) How do we recognise good research?, Psychologist, 16 (1):
4 24–27.
5 Sandelkowski, M. (1994) The proof is in the pottery: Towards a poetic for quali-
tative enquiry. In J. Morse (ed.), Critical Issues in Qualitative Research Methods.
London: Sage.
Scholes, R. (1974) Structuralism in Literature. New Haven, CN, and London:
8 Yale University Press.
9 Schatzman, L. and Strauss, A. L. (1973) Field Research: Strategies for a Natural
1011 Sociology. Englewood Cliffs, NJ: Prentice-Hall.
1 Schwandt, T. (1997) Qualitative Inquiry. Thousand Oaks, CA: Sage.
2 Schwandt, T. A. (2000) Three epistemological stances for qualitative inquiry:
3 Interpretivism, hermeneutics and social constructionism. In N. Denzin and
4 Y. Lincoln (eds), Handbook of Qualitative Research. Thousand Oaks, CA: Sage.
5 Scott-Hill, M. (2002) Policy, politics and the silencing of ‘voice’, Policy & Politics,
6 30 (3): 397–409.
7 Sidell, M. (1989) How do we know what we think we know? In A. Brechin and
8 J. Walmsley (eds), Making Connections: Reflecting on the Lives and Experiences
9 of People with Learning Difficulties. London: Hodder & Stoughton in
20111 Association with the Open University Press.
Simons, K. (1992) ‘Sticking Up For Yourself’: Self Advocacy and People with
Learning Difficulties. Community Care Publication in Association with the
Joseph Rowntree Foundation.
3 Simpson, M. (1999) Bodies, brains and behaviour: The return of the Three Stooges
4 in learning disability. In M. Corker and S. French (eds), Disability Discourse.
5 Buckingham: Open University Press.
6 Smith, J., Harré, R. and Langenhove, L. (eds) (1995) Rethinking Methods in
7 Psychology. London: Sage.
8 Sparkes, A. C. (1994) Life histories and the issue of voice: Reflections on an
9 emerging relationship, Qualitative Studies in Education, 7 (2): 165–183.
30111 Spradley, J. P. (1979) The Ethnographic Interview. New York: Holt, Rinehart &
1 Winston.
2 Stanley, L. and Wise, S. (1993) Breaking Out Again: Feminist Ontology and
3 Epistemology. London: Routledge.
4 Steedman, C. (1992) Past Tenses: Essays on writing autobiography and history.
5 London: Rivers Oram Press.
Sterne, L., cited in Johnson, B. S. (1977) Aren’t you rather young to be writing
your memoirs?. In Bradbury, M. (1977) The Novel Today. London: Fontana.
Strauss, A. and Corbin, J. (1990) Basics of Qualitative Research: Grounded theory
8 procedures and techniques. Newbury Park, CA: Sage.
9 Strauss, A. and Corbin, J. (eds) (1997) Grounded Theory in Practice. Thousand
40111 Oaks, CA: Sage.
1 Stronach, I. and MacLure, M. (1997) Educational Research Undone: The
2 Postmodern Embrace. Buckingham: Open University Press.
3 Stronach, I. and MacLure, M. (1998) Educational Research Undone. London:
44111 Routledge.
References 207

1111 Such, P. (2003) Dying man abandons hunger strike, Health, 6 February.
2 Sutcliffe, J. and Simons, K. (1993) Self-advocacy and Adults with Learning
3 Difficulties: Contexts & Debates. Leicester: The National Institute of Adult
4 Continuing Education in Association with the Open University Press.
Tedlock, B. (2001) Ethnography and ethnographic representation. In N. Denzin and
Y. Lincoln (eds), Handbook of Qualitative Research. Thousand Oaks, CA: Sage.
Thomas, W. I. and Znaniecki, F. (1958) The Polish peasant in Europe and America.
7 New York: Dover Publications. (Originally published in 5 volumes, 1918–1921.)
8 Titchkovsky, T. (2002) Cultural maps: Which way to disability? In M. Corker
9 and T. Shakespeare (eds), Disability/Postmodernity: Embodied Disability Theory.
1011 London: Continuum.
1 Toone, I. (1997) Discourse analysis. Unpublished MA thesis, University of
2 Nottingham.
3111 Tremain, S. (2002) On the subject of impairment. In M. Corker and T. Shakespeare
4 (eds), Disability/Postmodernity. London: Continuum.
5 Turner, M. (1991) Literature and social work: An exploration of how literature
informs social work in a way social sciences cannot, British Journal of Social
Work, 21: 229–243.
UPIAS (1976) Fundamental Principles of Disability. London: Union of the
8 Physically Impaired Against Segregation.
9 Ussher, J. M. (ed.) (1997) Body Talk: The material and discursive regulation of
20111 sexuality, madness and reproduction. London, Routledge.
1 Valuing People: A New Strategy for Learning Disability for the 21st Century
2 (2001). White Paper, HMSO. Online at http://www.archive.official-documents.
3 co.uk/document/cm50/5086/5086.htm.
4 Veck, W. (2002) Relational and psychological processes of exclusion, Disability
5 and Society, 17 (5): 529–540.
6 Vidich, A. and Lyman, S. (2000) Qualitative methods: Their history in sociology
and anthropology. In N. Denzin and Y. Lincoln (eds), Handbook of Qualitative
Research. Thousand Oaks, CA: Sage.
Walmsley, J. (1993) Explaining. In P. Shakespeare, D. Atkinson and S. French
9 (eds), Reflecting on Research Practice: Issues in Health and Social Welfare.
30111 Buckingham: Open University Press.
1 Wareing, D. and Newell, C. (2002) Responsible choice: The choice between no
2 choice, Disability & Society, 17: 419–434.
3 Weedon, C. (1987) Feminist Practice and Poststructuralist Theory. Oxford: Basil
4 Blackwell.
5 Whittemore, R., Langness, L. and Koegel, P. (1986) The life history approach to
6 mental retardation. In L. Langness and H. Levine (eds), Culture and Retardation.
7 Kluwer: D. Reidel Publishing Company.
Wilkinson, S. and Kitzinger, C. (1995) Introduction. In C. Kitzinger and
S. Wilkinson (eds), Feminism and Discourse. London: Sage.
Wilkinson, S. (1999) Feminist psychology: Values and visions, Psychology of
40111 Women Section Review, 1 (1): 20–32.
1 Wilkinson, S. and Kitzinger, C. (1996) Representing the Other: A feminism and
2 psychology reader. London: Sage.
3 Witherell, C. and Noddings, N. (1991) Stories Lives Tell: Narrative and dialogue
44111 in education. New York: Teachers College Press.
208 References

1111 Yalom, D. (1991) Love’s Executioner: And other tales of psychotherapy.

2 Harmondsworth: Penguin.
3 Young, K (1987) Taleworlds and Storyrealms: The phenomenology of narrative.
4 Dordrecht: Martinus Nijho Publishers.
Yuval-Davis, N. (1993) Beyond difference: Women and coalition politics. In
M. Kennedy, C. Lubelska and V. Walsh (eds), Making Connections: Women’s
studies, women’s movements, women’s lives. London: Taylor & Francis.
7 Zarb, G. (1992) On the road to Damascus: First steps towards changing the
8 relations of research production, Disability, Handicap and Society, 7 (2):
9 125–38
1011 Zhang, L. (1999) How women’s experiences introduced me to the psychology of
1 women, Psychology of Women Section Review, 1 (1): 41–42.
3111 Abberley, P. 81 Brown, T. 152
4 aesthetics 68–9 Burman, E. 101, 114, 115, 140
5 Alimo-Metcalf, B. 189 Burr, V. 101, 114, 153, 188
Angrosino, M. V. 176 Butler, J. 99, 100, 114, 126, 155
6 animators 62
7 anonymity 75–6 Capps, L. 62, 73, 76, 77, 153, 181
8 Armstrong, F. 106, 107 causality 135, 136–7, 138
9 Aspis, S. 187, 188 Charmaz, K. 57
20111 Assiter, A. 98, 99, 100 Cheston, R. 176
Atkinson, D. 176 Cicourel, A. V. 115
1 audience 90, 108, 113, 175–84 collaboration 154, 168–9
2 authenticity 76, 96, 98 composite narratives 66–7
3 authorial shaping 62 confidentiality 75, 76, 77–8, 79
4 authorship 69 context: voice relational analysis
5 134
Baker, R. 83 convergent interviewing 85
Bannister, D. 171 Corbett, J. 56–7, 95, 177
7 Bannister, P. 75, 97 Corbin, J. 119
8 Barnes, C. 105, 168 Corker, M. 157
9 Baron, S. 186 covert participation 57
30111 Belenky, M. F. 103 critical realism 178
1 Bersani, H. 188
Bertaux, D. 149, 152 Davies, J. 129
2 Bhavnani, K. 187 Davis, K. 193
3 Billig, M. 115 Deacon, J. 176
4 Bird, L. 154 deconstruction 101, 148, 150–1,
5 Black, R. 103 177, 178
6 Boal, A. 179 Derrida, J. 99, 101
Bogdan, R. 176 determinism 89, 95
7 Booth, T. 67, 87, 149, 176, 187 Dexter, L. A. 176
8 Booth, W. 67, 87, 149, 176, 187 Dick, R. 85, 121
9 Borland, K. 91 Didion, J. 66, 79
40111 Bradbury, M. 89 diegesis 122
1 Brannen, J. 190, 191 Dingham, H. F. 59
Breggin, P. 186 disability 26–39, 55, 63–6;
British Disability Movement 105 emancipatory research 64, 65,
3 Brown, L. M. 88, 116–17, 118, 132, 88–9, 105; story application
44111 169 191–3; see also Hope, David
210 Index

1111 Disability Discrimination Act (1995) foundationalism 99

2 176 frameworks 113–24
discourse analysis 113–16, 125–9, Frank 40–52, 55; a/effecting 183–4;
3 150–2, 177 engagement 89–90, 92–3;
4 discrimination 189–90 epistemology 107–10; ethics 78–9;
5 Doerr, H. 109 findings 141–8; framework 121–3;
6 Doucet, A. 117, 132, 155 lessons from 173–4; methodology
7 Du Bois, B. 117 66–9; reflections 95–6; reflexivity
Duffy, K. G. 60, 62 158–61; starting off 74–5; story
8 Dunn, K. 85, 158, 183 application 193–5; writing 85–6
9 Dybwad, G. 188
1011 Gilligan, C. 88, 116–17, 118, 132, 169
1 Eagleton, T. 101 Glaser, B. G. 85, 119–20
2 Edgerton, R. 56 Goffman, 62
education 40, 74; fiction application Goodson, I. 89
3 193–5; see also Frank Gordon, T. 98
4 emancipatory interviews 55, 60–3; governance 115–16, 126–8
5 a/effecting 178–81; engagement 88; grand narratives 98–100, 102
6 ethics 76–7; lessons from 168–71; Griffin, C. 154
7 reflections 91, 94; writing 82–3; see grounded theory 119–21, 135–41,
also Stamford, Colleen 156–8
8 emancipatory research: disability 64, Guba, E. G. 57
9 65, 88–9, 105
20111 empowerment 105–6 Haraway, D. 117
1 epistemology 97–110 Harding, S. 61, 178
2 Erlandson, D. A. 57 Harrison, Maddie 9–14, 128, 186
ethics 57, 65, 75–9, 90, 156, 170 Hedges, W. 101
3 ethnography 56–9, 71–2; framework Heidegger, M. 161
4 98; see also non-participatory Heller, K. 60
5 ethnography; participatory Henriques, J. 115
6 ethnography Henwood, K. L. 117
7 evaluation 160–1 hermeneutics 97, 117, 149
exaggeration 177–8 Hofstadter, A. 161
8 Hollway, W. 156
9 Fairclough, N. 114 Homan, R. 156
30111 feminism 61–2, 102–5, 132, 153–4, Hope, David 26–39, 55; a/effecting
1 189; millennium 180; 181–3; engagement 88–9;
poststructuralism 101; voice 91, epistemology 105–7, 110; ethics
117, 169; see also Stamford, Colleen 77–8; findings 135–41; framework
3 Ferguson, P. M. 188 119–21; grounded theory 119–21,
4 Feyerabend, P. 104 135–41, 156–8; lessons from 171–3;
5 fiction 55, 66–9, 87; a/effecting 183–4; methodology 63–6; reflections 94–5;
6 engagement 89–90, 92–3; reflexivity 156–8; starting off 73–4;
epistemology 107–10; ethics 78–9; story application 191–3; writing
7 lessons from 173–4; 84–5
8 poststructuralism 102; reflections Hughes, B. 150, 188
9 95–6; story application 193–5; Humm, M. 61
40111 writing 85–6; see also Frank Hunt, L. 103
1 Fido, R. 176 Hunt, N. 176
Finch, J. 117
2 Fine, M. 180 identity 104–5
3 Foucault, M. 99, 100, 101, 115, 116, idiographic 97
44111 128, 137, 150 Inglis, F. 159
Index 211

1111 interviews: convergent 85; see also Mauthner, N. S. 103, 117, 132, 155
2 emancipatory interviews meaning-making 71
Iser, W. 123 Means, R. 176
3 medical model of disability 136–8,
4 Jacoby, S. 62 140
5 Jefferson, T. 156 memoing 121
6 Jones, L. 152 Mendick, J. 194
7 methodologism 104
Kagan, C. 60, 103, 155, 178–9 methodology 55–70
8 Kaufman, S. Z. 176 methods 55, 71–96
9 Kershaw, J. 168 Milbourne, L. 129
1011 Kilman, R. 149 mimesis 122
1 Kitzinger, C. 62, 88, 116, 125, 153, Mischler, E. 82
2 169 Mitchell, J. 151
Klages, M. 101 Mitroff, I. 149
3111 Koegel, P. 149 modernism 100
4 Korbin, J. E. 176 modernity 152
5 Kundera, M. 95, 109–10 Morris, J. 139
6 Kurtz, R. A. 127 Murdoch, 89
Lacan, J. 99 Namenwirth, M. 61
8 Langness, L. 149, 154 National Centre for Independent
9 language 107, 110; creative 98; Living (NCIL) 182, 192, 193
20111 poststructuralism 101 Newell, C. 139
1 Lapsley, H. 103 Nicholson, P. 169, 189
2 Larson, C. 62, 91, 117, 154, 170 Nikora, L. 103
learning difficulties 3–14, 58–9; people Nisbet, R. 177
3 as objects 125–6; social problem Noddings, N. 62
4 176; story applications 185–8; noemata 160
5 subjectification 115–16, 126–8; see non-participatory ethnography 55,
6 also O’Toole, Gerry 56–60; a/effecting 181–3;
7 Learning Disability Awards engagement 87; ethics 75–6; lessons
Framework (LDAF) 187 from 165–8; reflections 90–1;
8 Lea, S. L. 176 writing 79–82; see also O’Toole,
9 Levine, H. 154 Gerry
30111 Lewis, S. 103 non-participatory fiction see fiction
1 Lincoln, Y. S. 57 Nourozi, G. 186, 187
literary theory 107–10, 121–3, 141–8, Nutbrown, C. 69, 97
158–61; a/effecting 183–4;
3 engagement 89–90; reflections 95–6 Oakeshott, M. 68
4 Lofland, J. 156 Oakley, A. 104
5 Lofland, L. H. 156 objectification 126
6 Lubbock, P. 122–3 objectivity 102, 106, 160
Lyman, S. 56 Ochs, E. 62, 73, 76, 77, 153, 181
7 Lyotard, J. 98–9 Oliver, M. 62, 63, 64, 90, 105, 106,
8 119, 126, 177
9 MacLure, M. 67–8, 99 Oppenheim, C. 129
40111 McNay, L. 104–5 Oswin, M. 176
1 Malinowski, B. 56, 102 O’Toole, Gerry 3–14, 55, 177;
Mama, A. 102 a/effecting 175–8; discourse
2 Martell, Yann 158–9 analysis 113–16, 125–9, 150–2,
3 Marxism 152, 177 177; engagement 87; epistemology
44111 Marx, K. 151 98–102; ethics 75–6; findings
212 Index

1111 125–9; lessons from 165–8; Robinson, D. N. 104

2 methodology 56–60; reflections roots: Frank 90, 93, 95, 141, 146–7,
90–1; reflexivity 150–2; starting off 174
3 71–2; story application 185–8; Rose, N. 115, 126
4 writing 79–82 Ruddick, S. 88
5 overt participation 57 Russell, L. M. 61
6 ownership 83, 102, 149, 167–8 Ryan, J. 100, 186
Page, L. 187, 188 Salmon, P. 104
8 Parker, I. 101, 114, 115 Sandelowski, M. 68–9
9 Parker, T. 81, 178 Scholes, Robert 107–9
1011 participatory ethnography 55, 63–6; Schwandt, T. 82
1 engagement 88–9; ethics 77–8; scientific method 104
2 lessons from 171–3; reflections 94–5; Scott-Hill, M. 192
writing 84–5; see also Hope, David self 88, 155, 166–7; discourse analysis
3 partisanship 168 114; governance 127
4 Paterson, K. 150, 188 self-advocacy 9, 58, 76, 129, 186, 188
5 People First 5, 9–14, 126, 129, 152 sense-making 82
6 Pidgeon, N. F. 117 sexuality: Frank 90, 93, 95, 141,
7 Plato 121, 122 145–6; gender 189; see also
Plummer, K. 76, 87, 155, 166, 177 Stamford, Colleen
8 positionality 110 Shakespeare, T. 157
9 Postman, N. 110, 159 showing 122
20111 postmodernism 98–9, 149, 151 Sidell, M. 114
1 poststructuralism 98–102, 113–14, Sikes, P. 89
2 150–2, 166, 177; deconstruction Simons, K. 58, 186
178; resistance 116 Simpson, M. 188
3 Potter, J. 115, 168 Smith, R. 176
4 Potts, M. 176 social constructionism 101
5 power: discourse 115; feminism 117; social model of disability 63, 105–7,
6 relations 90, 182 119, 141, 157
7 Priestley, P. 106 Sparkes, A. C. 82
professionalisation 187 specificity 97
8 psychoanalysis 89 spectators 179
9 psy-complex 115, 126, 128–9 Spradley, J. P. 58
30111 Stamford, Colleen 15–25, 55;
1 radical relativism 178 a/effecting 178–81; engagement 88;
Ramazonoglu, C. 103 epistemology 102–5; ethics 76–7;
Rapaport, J. 179 findings 129–34; framework 116–19;
3 realism: critical 178 lessons from 168–71; methodology
4 Reason, P. 60 60–3; reflections 91, 94; reflexivity
5 Reay, D. 189 153–5; starting off 72–3; story
6 reflexivity 88, 117, 149–62 application 189–91; writing 82–3
regulation: discourse 115 Stanley, L. 90
7 relativism 178 Steedman, C. 191
8 religion: Frank 90, 92, 95, 141, 144–5 Sterne, L. 123
9 Rennie, D. L. 104 Strauss, A. L. 119–20
40111 resilience 128–9 Stronach, I. 67–8, 99
1 resistance 115–16, 128–9, 137–8 subjectification 115–16, 126–8
Richardson, L. 67, 109 subjectivity 101, 106, 114, 160
2 Riddell, S. 186 subjugated knowledge 137
3 Rimmon-Kenan, S. 123 Such, P. 182
44111 Robbe-Grillet, A. 110 Sutcliffe, J. 58, 186
Index 213

1111 Taylor, S. 176 voice relational analysis 88, 116–19,

2 teachers see education 129–34, 168–71; critical
teaching 165–74 reflections 153–5; lessons from
3 Tedlock, B. 56, 58, 71–2, 90 168–71
4 telling 62, 76, 108, 122–3
5 thingification 125 Walker, 79
6 Thomas, F. 100, 186 Walmsley, J. 58
7 Thomas, W. I. 149 Wareing, D. 139
Titchkovsky, T. 125, 126 Watson, N. 129
8 Toone, I. 149 Weedon, C. 101
9 transformative research 180–1 Wetherell, M. 115, 168
1011 Tremain, S. 126 Whittemore, R. 59, 149, 188
1 truth 68–9, 99, 109, 115, 159, 161 Wilkinson, S. 62, 116, 125, 153,
2 Turner, M. 76 169
Williams, F. 176
3111 Union of the Physically Impaired Wise, S. 90
4 Against Segregation (UPIAS) 64 Witherell, C. 62
5 Ussher, J. M. 102–3, 189 Wong, F. Y. 60, 62
7 validation 160–1 Yalom, D. 67
Valuing People 176, 186, 187 Young, K. 76
8 Veck, W. 192 Yuval-David, N. 102
9 Vidich, A. 56
20111 voice 91; articulacy 87; dominance Zarb, G. 89, 105
1 155, 170; emancipation 62–3; Zhang, L. 103
2 feminism 91, 117, 169 Znaniecki, F. 149