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TilE HIDDEN COSTS OF CARI�:
WOMEN WHO CARE FOR PEOPLE W ITII
INTELLECTUAL DISAB IL ITIES
A thesi s pre se nted i n pa rti al f ul f il me nt of th e req ui reme nt s for th e de gree
of Doctor of Ph i l o so phy at Massey Uni versi ty
Roby n �1 u nford 198 9
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... the mother is really the one that looks after the handicapped c hildren because the husband has to work. And then when he comes home tired from work he doesn•t want to know how many times that day wet on the floor or was sick or she had a row with the neighbour because of the kid or something else .. •
(Quote from a mother)
The y're always in the caregiving roles. Direct hands on caregiving roles . • • . ! think it goes back to the traditional my th of women as being primary caregivers. The men in positions of power •
• . • I think mainly the men I've come into contact
with within the IHC have been administrators or managers or executive staff, something like that, and it• s the women w ho do all the hands on, all the middle management not usually top management ...
(Quote from a mother)
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ABSTRACT
Th i s d i s sertatio n exam i nes th e w ay s i n wh i ch patr i a rch al systems struct u re a nd co ntrol the 1 ives of women w ho ea re for peopl e w i th i ntel l ect ual d i sa b i l i ti es . It i s a rgued th at th e p owe r r el a tio n s w h ich de r i v e f rom these sy stems h av e remai ned h i dde n a nd t h a t th e ri ch ness and d iversity of th e expe r i ences of th ese wome n h ave no t been adeq ua tel y po rtray ed .
In a n attem pt t o a uth enti cal l y capture th e 1 ived experi ence s of women w ho cared for peo pl e w i th i ntel l ect ual d i sa b i l i ti es th i s d i s serta t io n p rov i de s a n acco unt o f th e p e rce pt i o ns o f th i rty women. Th ese women were mo th e rs of peo pl e w i th i ntel l ect ual d i sa b i l i ti e s and/or pa i d worke rs emp l ey ed by th e New Zeal a nd Soci ety fo r th e I ntel l ect ual l y Han d i ca p pe d , a l a rge vol unta ry Orga n i sa ti o n prov i d i n g se rv i ces fo r peo pl e w i th i ntel l ect ual di sa b i l iti es i n New Zeal a nd, hereafter desi gnated th e Orga ni sa tio n.
Ce rta i n key p r i nci pl es of fem i ni st theory and resea rch a re used to dev el op a n a nal y si s wh i ch seeks to not o nl y reveal perti ne
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trel ati ons ot pow er, but to exam i ne a nd cr i ti q ue th em . Th i s proce ss co n tr i buted to the dev el o�XT�ent of a mea n s for tran sform i ng bo th th e p r act i ces t h at co nt rol th e women' s 1 ived expe r i ence s a nd t h e mea ni ngs
u sed to i nte rpret th ese experi ence s.
Th e a nal y si s of th e rel ati o ns of pow er th at co ntrol l ed women w ho ca re for peop l e w i th i ntel l ect ual d i sa b i l i t i e s was advanced i n rel atio n to tw o key si te s : t h e ho usehol d a nd the O rga ni sa ti o n . Th e exp l a natory f r amework dev el oped to expl ore th e 1 ived experi ence s of th e wome n w a s de r i v ed f rom ce rta i n i ntel l ect ual st rands i n th e French trad i ti o n . I r i ga r ay ' s w ri t i n gs were u sed to el u c i date th e w ay s i n w h i ch patr i a rch al sy stems ope r ate to co ntrol th e women• s 1 ives. Fo uca ul t1 s th eoreti cal concept s co ntri bute d to th e devel o �XT�ent of certa i n tech nol ogi es of pow e r that ope rated i n the ho usehol d a nd the Orga n i sa tio n . These tech nol ogies of pow e r w h i ch p e rv a ded th e da i l y
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1 ives of women relate to both the material conditions of their existence and to the social meanings used to def ine thei r 1 ives.
Several significant themes emerged from the analysis of the women's experiences. One of the most important of these related to the women's views on the policies of community care. In exam1 mng these the women's ambivalent feelings about the implications of these changes are articulated.
Associ ated with this finding the themes also clearly supported the view that new ways of explaining women's 1 ived experience must be developed. A def initive example of this was the way in which feminist theory must continue to re-examine the expl ana to ry usefulness of the now familiar private and public dichotomy as a concept for des cri bi ng women's experiences. The present research identifies some alternatives for explaining and understanding women's experiences in the private and public realm. Some possibilities for extending this process further are also addressed.
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ACKN<lflEDGEfooENTS
The writing of this thesis has been a meaningful experience for me in that it has been both an important p hase in not only my academic 1 ife but also in my personal life as a woman and a mother.
Many people have given me support and encouragement. I would 1 ike to thank my family and also those with whom I have worked over the past years. It is these people w ho introduced-me to and showed me the importance of this field of work. I would especi ally like to thank the women w ho influenced my decision to begin this researc h.
A special thank you must go to the women who shared so openly their stories with me. I felt very privileged to learn about some of their
1 ife experiences. This thesis belongs to these women and I hope it truly represents the 'reality' of their daily lives.
� supervisors have both been extremely supportive and have given many hours of their time. Thank you to Professor Graeme Fraser and to Merv Hancock for their interest and encouragement. They have always been available to provide me with stimulating and constructiv
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feed back.
A very speci al thanks must go to Wendy Craig, Department of Soci al Pal icy and Social Work, Massey University. Thank you, Wendy, for providing the feedback and also the very practical support when I needed it I
Ep hra Garrett and Bev James have also shared their knowledge and experiences with me.
� partner, Garth, and my son, Matthew, must also be thanked as they have helped me find the space to work and have helped me keep my commitments in perspective through out this time. They have been patient in coping with my lengthy absences away from the household.
A special thanks must go to J ill Cheer who had the task of typing the final draft and who managed throug h it all to keep smiling.
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TABL E OF CONTENTS
Page No
/'SS TRACT i i i
ACKNCWLECGEMENTS V
PART ONE OiA PTE R ONE: INTRODUCTION
The Context: The New Zealand Society for the Intellectually Handicapped
1
( IHC) 8
Women Who Care 11
The Form of the Thesis 16
OiAPTER lWO: THEOR ETICAL PER SPECTIVES 19
Feminist Theory and Researc h 19
Critique of Econom ic Explanations of
Power 22
Foucaul t and Irigaray 1 s Understanding
of the Nature of Power 25
�1i eh el Fo uca ul t Luce Irigaray
A Framework for Analysing the Experiences of Women W ho Care for
'
283 9
People with Intellectual Disabil ities 47
The Household- Women's Daily
Lives and Experiences of Power 49
The Observation, Examinati on and Comparison of Women
in the House hold 51
The Use of Knowledge to Control Women in the
Household 53
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The Use of Language to Control Women's Experiences
Page No
in the Household 5 5 The Technologies of Power
Operating in the Organisation 5 5 The Observation, Examination and Comparison of Women in
the Organisation 56
Th e Use o f Knowledge to Control Women in the
Organisation 5 9
The Use of Language to Gbntrol Women in the
Organisation 60
Women's Re si stance to the Power
Relations 6 1
The Process of Otange 62 The Role of Change Agents
in the Process of Change 67
� APT ER THREE: TH E R ES EAR� PROCESS Theory and Research
The Role of Feminist Methodology in This Study: Factors That Have
7 1 7 1
\
Influenced the Research Design 73 The Process of Carrying Out the
Research: Setting the Scene 75 The Procedures and Criteria Used to
Select the Women 78
The Interv i e;ws 80
The Analysis 85
PART lWO
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Page No
TH E WOMEN'S EXPER I ENCES 88
CHAPTER FOUR: WOMEN'S EXPER IENCES IN
THE HCXJSEHQD 89
The Major Th ernes 89
The Daily Routines and Relationships
Associated with Caregiving 91
A Day in the L ife of a Caregiver 91
Morning Routine 92
The Daily Routine 93
The Afternoon and Evening Routines 93 The Women's Feel ings About Their
Daily Routines 94
Health and Wel 1- Bei ng 99
Time and Waiting 101
Women's Commitment 1 03
Making Sacrifices 105
Support 109
Feel i ng Gratefu l / 1 13
Feeling Worthless 1 14
Feeling Ambivalent - The Good and
the Bad 1 15
CHAPTER F IVE: AN ANALYS IS OF WOMEN'S
EXPER I ENCE IN THE HQJS EHQD 1 17 Women's Daily Experience of Power 1 18 Observation, Exam i nation and
Comparison 1 19
Know 1 edge 1 23
Language 1 27
CH APT ER S IX: WOMEN'S EXPER IENCES WITH THE
ORGAN ISAT ION 13 0
The Major Themes 13 0
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Page No
Work With the Organisation 132 Direct Caregiving Positions 134 Social Work and Support Fbsitions 134 Staff Training and Pol icy
Developnent 13 5
Management/Serv ice Coordinator
Fb si tions 136
The Women's Feelings About Paid
Work 13 7
Vol unta ry Work 143
Feeling Worthless 1 47
Decision-Making Processes 150
Exchanging Information About the
Organisation 1 5 8
Exchanging Information About Caregiving 163
Support 166
Work Without Reward 170
Community Care 176
Struggles and Resistances
�
Feeling Ambivalent - The Good and the
189
Bad 200
OiAPTER SEVEN: AN ANALYS IS OF WOrvEN ' S
EXPER IENCES W ITH THE ORGAN ISAT ION 202 Observation, Examination and Comparison 202
Knowledge 205
Language 209
a-JAPTER EIGHT: \�OMEN'S R ESPONSES TO THE
RELAT IONS OF POWER 2 1 2
A P PENDIX ONE
A PPENDIX lWO
B IBL ICGRA FHY
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a-tA PTER N !NE: CONQUS IONS Major Thanes
Private and Public Worlds
�1utual ity and Conflict Bringing About Change Community Care
Future Research
Personal Cl"laracteri sties of the Women
The Interview Schedule
Page No
222 225 225 22 8 229 23 2 23 4
237 243 251
