Double Disability: Lived Experience of Australian Tertiary Students with ME/CFS.

342 Pages·2005·1.55 MB·English

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Double Disability:

Lived Experience of Australian Tertiary Students

with ME/CFS.

by

Dorothy Morris

TSTC, HDT(Sec), B.Voc.Ed.&Tr, Dip.RBM.

Submitted in total fulfilment of the requirements for the degree of

Doctor of Philosophy

Faculty of Education

Deakin University

Geelong, Victoria

July, 2003
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DEAKIN UNIVERSITY

CANDIDATE DECLARATION

I certify that the thesis entitled
“Double Disability: Lived Experience of Australian Tertiary Students with
ME/CFS”
submitted for the degree of
Doctor of Philosophy

is the result of my own work and that where reference is made to the work of
others, due acknowledgment is given.
I also certify that any material in the thesis which has been accepted for a degree
or diploma by any other university or institution is identified in the text.

Full Name....Dorothy I.W. Morris.............................................…………...
Signed ..................................................................................……………….
Date...31/7/2003...................................................................................…….
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Acknowledgements

This study has been possible through the loyal support which I have received from
the forty study participants who have come from every state and territory of
Australia. I would like to thank the participants in this research who gave so
generously of their time and limited energy while often in intense pain.

I wish to thank my supervisors Associate Professor Ian Robottom, Ms. Wendy
Kortman and Mr. Neville Millen. As Principal Supervisor, Wendy understood my
vision and helped me to develop this project over the first two years. The role of
Principal Supervisor was then taken over by Ian, ably assisted by Wendy as Co-
Supervisor. Ian has always been encouraging and freely giving of his considerable
expertise in the further development of this research. Neville, as the second Co-
Supervisor, has provided valuable support in adopting the role of critical friend.

I have benefited from the support given by the Dean of Research, Professor Terry
Evans, the Research and Graduate Studies Office of the Faculty of Education at
Deakin University and also the financial assistance provided to attend conferences
and present papers. The last eighteen months of my studies have also been assisted
by a Deakin University Post-graduate Research Scholarship. Without the support of
the Deakin University Library this research would have been an impossible
undertaking by distance education so thankyou to Dr. Peter Macauley, Ms. Maree
Kavanagh and the Off-Campus Librarians. Also thank you to the Information
Technology staff of the Education Faculty.

I would like to thank the many people who were interviewed for this research for so
generously giving of their time. Thank you to the many individuals in the ME/CFS
‘Peer Fraternity’ both in Australia and overseas who forwarded on papers and items
which they felt would be of interest and also offered encouragement: there are so
many people I am unable to name all the individuals. A heartfelt thank you goes to
Fiona and Farrah Tate for facilitating the SAYME meeting in Adelaide in 2001. To
all of my friends who have generously assisted me with encouragement and moral
support, especially Wendy Anderson, Tom McGlynn and Vic Snowdon, a big
thankyou.

My thanks go particularly to my husband Ern for his love, understanding and
unfailing support at all times and to our daughters Yvonne and Brenda for practical
computer help and enthusiasm.

This study is dedicated to the memory of my late parents, Lionel and Mary Yarde
who understood my thirst for knowledge and gave me the early opportunities to
assuage these desires. Summa pete.
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Table of Contents

Double Disability, Lived Experience of Australian Tertiary Students
with ME/CFS . . . . . . . . i

Candidate’s Certificate . . . . . . . i
Acknowledgments . . . . . . . . i
Table of Contents . . . . . . . . iv
List of Tables . . . . . . . . x
List of diagrams . . . . . . . . xi
Abstract . . . . . . . . . xi
An Explanation of the Name ME/CFS
(Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) . . . xi

Chapter 1 - Background to study: the context of the problem . . 1

1.1 Introduction . . . . . . . . 1
1.2 Human Rights and Disability Expectations in Australia . . 2
1.3 Disability Understanding . . . . . . 5
1.4 The Medical Condition . . . . . . 7
1.5 Incidence of ME/CFS among Australian Tertiary Students . . 8
1.6 Students with ME/CFS . . . . . . 8
1.6.1 Self-help by Australian Students with ME/CFS . . 10
1.6.2 Students’ Experiences . . . . . . 1
1.6.2.1 Australian Students . . . . . 12
1.6.2.2 Overseas Students . . . . . 13
1.6.2.3 The Researcher’s Student Experience . . 14
1.7 Isues of Equity . . . . . . . 15
1.8 Posible Benefits of the Research . . . . . 16
1.9 My Aproach – Insider Research . . . . . 18
1.10 Content of Research . . . . . . . 20
1.1 Summary . . . . . . . . 2

Chapter 2 - Review of the Related Literature . . . . 24

2.1 Introduction . . . . . . . . 24
2.2 Social Constructions and ME/CFS . . . . . 25
2.3 Diagnosis, Controversy and Community Atitudes . . . 29
2.4 Survey of Some Symptoms of ME/CFS . . . . 35
2.5 General Education . . . . . . . 38
2.5.1 Overseas Experiences . . . . . . 39
2.5.2 Some Perspectives of the British School Situation . . 39
2.5.3 Some Perspectives of the American School Situation. . 40
2.5.4 Some Perspectives of the Canadian Schol Situation . . 41
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2.6 Education in Australia . . . . . . . 42
2.6.1 Guidelines for Education in Australia . . . . 43
2.6.2 Schol Guidelines . . . . . . 4
2.6.3 Disability Guidelines Used in Tertiary Education . . 48
2.6.4 Conclusion on Australian Guidelines for Education . . 53
2.7 Regulations and Indirect Discrimination . . . . 53
2.7.1 Equity Aces . . . . . . . 53
2.7.2 Atendance Requirements . . . . . 5
2.7.3 Financial Considerations . . . . . 56
2.8 Australian Education Surveys . . . . . . 57
2.8.1 ‘Just a Lazy Tenager’ . . . . . 57
2.8.2 ‘Disability Discrimination in Schols’ . . . 58
2.8.3 ‘Bridging the Gap’ . . . . . . 59
2.9 Research Questions . . . . . . . 61
2.10 Summary . . . . . . . . 63

Chapter 3 - Journey through Methodological Isues . . . 64

3.1. Introduction . . . . . . . . 64
3.2 Searching for a Methodology . . . . . . 64
3.3 Circumscribing of Methodology by ME/CFS . . . 65
3.4 Explorations of an Interpretive Aproach . . . . 6
3.4.1 Case Study . . . . . . . 67
3.4.2 Ethnography . . . . . . . 68
3.4.3 Narative and Autobiography . . . . . 71
3.4.4 Action Research . . . . . . 73
3.4.5. Elements of a Critical Perspective . . . . 76
3.4.5.1 Fay . . . . . . . 7
3.4.5.2 Weber . . . . . . . 78
3.4.5.3 Habermas . . . . . . 79
3.4.6 Critical Ethnography . . . . . . 82
3.5 Adoption of a Critical Perspective . . . . . 85
3.6 Summary . . . . . . . . 85

Chapter 4 - Research Design: Instrumentation of the research . 87

4.1 Introduction . . . . . . . . 87
4.2 Criteria for Participation . . . . . . 87
4.2.1 The Research Definition of ME/CFS . . . . 8
4.2.2 Considerations Arising from the Recruitment . . 89
4.3 Exploration of Methods for Data Collection . . . . 90
4.3.1 The Use of Questionaires . . . . . 91
4.3.2 Interviewing in Person and Telephone . . . 92
4.3.3 Story-Teling . . . . . . . 94
4.3.4 Electronic Mail . . . . . . 95
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4.4 Content of the Research . . . . . . 96
4.5 Factors which Impact on Stories . . . . . 97
4.5.1 Electronic Mail Impact on Stories . . . . 102
4.6 Ethical Isues . . . . . . . . 104
4.6.2 Therapeutic Benefits . . . . . . 105
4.5.3 The Researcher’s Role: ‘Insider’ Research . . . 106
4.7 Analysis of Research . . . . . . . 107
4.8 Summary . . . . . . . . 1

Chapter 5 - Research in Practice . . . . . . 12

5.1 Introduction . . . . . . . . 12
5.2 Research Invitation . . . . . . . 12
5.3 Plans for Recruitment . . . . . . . 13
5.4 Search for Participants . . . . . . 14
5.5 Response to the Invitation . . . . . . 15
5.6 Reflections on Recruitment . . . . . . 15
5.7 Summary . . . . . . . . 16

Chapter 6 - Collated Participant Profiles . . . . 117

6.1 Introduction . . . . . . . . 17
6.2 Analysis and Discussion of the Participant Profile Questionnaires . 118
6.2.1 Question 1: Name (optional) . . . . . 18
6.2.2 Question 2: Name of Institution/s . . . . 119
6.2.3 Question 3: Name of Course/s . . . . 120
6.2.4 Question 4: Number of years of course completed
(if incomplete) . . . . . . 123
6.2.5 Question 5: Are you studying part-time or full-time?. . 124
6.2.6 Question 6: Are you studying on-campus or off-campus, or
combination of both, or in another format? . . . 125
6.2.7 Question 7: Did you have ME/CFS before you commenced
your course? . . . . . . . 126
6.2.8 Question 8: How long have you had ME/CFS? . . 127
6.2.9 Question 9: If ME/CFS commenced during your studies,
how long was it before you received a diagnosis? . . 128
6.2.10 Question 10: Does your ME/CFS diagnosis concur with the
Ramsay-Fukuda Diagnostic Criteria? . . . . 129
6.3 Additional Comments Arising from the Participant Profile
Questionaire . . . . . . . 129
6.3.1 Completions . . . . . . . 129
6.3.2 Withdrawals . . . . . . . 130
6.3.4 Withdrawals from Science and Mathematically Based
Courses . . . . . . . 132
6.3.5 Dyscalculia . . . . . . . 13
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6.4 Areas for Investigation in Future Research Arising from
Questionaire . . . . . . . . 13
6.5 Summary . . . . . . . . 135

Chapter 7 - The Participant Stories . . . . . 136

7.1 Introduction . . . . . . . . 136
7.2 Methodological Concerns . . . . . . 137
7.2.1 Selection Criteria Invoked in Choosing Participant Stories . 138
7.2.1 Method Adopted for the Retelling of the Stories . . 139
7.3 Stories Included in this Chapter . . . . . 140
7.3.1 Bianca’s Story . . . . . . . 140
7.3.2 Katrina’s Story . . . . . . 147
7.3.3 Tery’s Story . . . . . . . 15
7.3.4 Kathryn’s Story . . . . . . 167
7.4.5 Marlene’s Story . . . . . . 173
7.4.6 Teresa’s Story . . . . . . . 179
7.4 Return of the Participant Stories . . . . . 18
7.5 Common Areas of Concern . . . . . . 190
7.6 Summary . . . . . . . . 190

Chapter 8 - Topical Analysis of Participant Stories . . . 192

8.1 Introduction . . . . . . . . 192
8.2 Bureaucratic Structures . . . . . . 192
8.2.1 Rules and Regulations. . . . . . 192
8.2.2 Atendance Requirements . . . . . 195
8.2.3 Atendance at Lectures . . . . . 196
8.3 Asesment . . . . . . . . 197
8.3.1 Cognitive Dysfunction . . . . . 197
8.3.2 Examinations . . . . . . . 198
8.3.3 Essays, Assignments and Written Work . . . 200
8.4 Physical Aces . . . . . . . 202
8.4.1 Car Parks . . . . . . . 202
8.4.2 Walking and the Geography of the Campus . . . 203
8.4.3 Library Aces . . . . . . 205
8.4.4 Other Aces Problems . . . . . 206
8.5 Personal Relations . . . . . . . 207
8.5.1 Lecturers and Other Staf . . . . . 207
8.5.2 Supervisors . . . . . . . 209
8.5.3 Disability Liaison Oficers . . . . . 210
8.5.4 Pers . . . . . . . . 212
8.5.5 Family . . . . . . . . 213
8.5.6 Other Persons . . . . . . . 214
8.6 Personal Impacts . . . . . . . 214
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8.6.1 The Name of Chronic Fatigue Syndrome . . . 215
8.6.2 Credibility and Felings . . . . . 216
8.6.3 Emotional Impact . . . . . . 218
8.7 Thematic Contents: Four Intertwined Themes . . . 219
8.8 Summary . . . . . . . . 20

Chapter 9 - Intertwined Themes and Theories . . . . 221

9.1 Introduction . . . . . . . . 21
9.2 Four Intertwined Themes . . . . . . 21
9.2.1 Theme 1 – ME/CFS Illness . . . . . 223
9.2.2 Theme 2 – Campus Experiences . . . . 224
9.2.3 Theme 3 – Medically Contested Condition . . . 226
9.2.4 Theme 4 – Summative Personal Impact . . . 229
9.3 Iterative Checking with Participants . . . . 231
9.3.1 Acceptability of the Four Themes . . . . 231
9.3.2 Analysis Expectations . . . . . 234
9.3.3 Motivation to Participate . . . . 235
9.4 Stigma, Activism and ME/CFS . . . . . 236
9.5 Summary . . . . . . . . 242

Chapter 10 - Revisiting the Research Questions and Future Directions 244

10.1 Introduction . . . . . . . . 24
10.2 Revisiting the Research Questions . . . . . 24
10.3 The Key Question . . . . . . 249
10.4 Deper Considerations . . . . . . 250
10.5 Toward New Directions . . . . . . 251
10.6 Testing My Ideas . . . . . . . 254
10.7 Interim Strategy Development . . . . . 256
10.8 Interim Protocol . . . . . . . 261
10.9 Future Research Neded . . . . . . 262
10.10 Conclusions . . . . . . . . 262
10.1 Summary . . . . . . . . 263

Chapter 11 –Reflections and Epilogue . . . . . 265

1.1 Introduction . . . . . . . . 265
1.2 Warnings . . . . . . . . 265
1.3 Stories . . . . . . . . 26
1.4 Care . . . . . . . . . 267
1.5 Empowering . . . . . . . . 268
1.6 Empathy or Raport . . . . . . . 269
1.7 Responsibility . . . . . . . 270
1.8 ‘Do no harm’ . . . . . . . . 271
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1.9 Checks and Balances . . . . . . . 272
1.10 Reflections . . . . . . . . 273
1.1 Miscelaneous thoughts . . . . . . 274
1.12 Summary . . . . . . . . 275

References . . . . . . . . . 276

Appendices . . . . . . . . . 316
Appendix 1: Participant Profile Questionnaire and Ramsay/Fukuda
Research Criteria . . . . . . . 316
Apendix 2: Marlene’s Poem . . . . . . 319
Apendix 3: Iterative Checking: Motives and Themes . . . 320
Appendix 4: Questionnaire: South Australian Youth With ME (SAYME)
Meting, Adelaide, February 20 . . . . . 321

Glosary and List of Abbreviations. . . . . . 32
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List of Tables

Table 6.1 Gender Balance . . . . . . . 19
Table 6.2 Analysis by State for Participant’s Place of Residence
and Location of Institutions . . . . . 120
Table 6.3 Delay in Diagnosis of ME/CFS for Participants . . 129