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Equity and Cognitive Dysfunction Dilemmas
(2001), peer-reviewed abstract 'Education, Equity and
Cognitive Dysfunction Dilemmas,' paper presented at The Third
Sydney International Clinical and Scientific Meeting, 'The
Medical Practitioners' Challenge' at Manly Pacific Parkroyal,
Sydney, Australia, held 1-2 December, 2001 for Researchers and
Clinicians (CMI points awarded). Sydney, convened by Alison
Hunter Memorial Foundation.
awareness of medical practitioners to the full implications of
their medical certification of disability assessment and long
term disability for chronic and complex illnesses. This
includes awareness of the need for full understanding and
cognisance of the implications of all symptoms of ME/CFS and
the far reaching impact of the same.
addresses the issue of the Cognitive Dysfunction of ME/CFS
affecting education and educational outcomes for students and
also how the present system leaves vulnerable medical
practitioners, disability officers, academics and teachers
under the Federal Disability Discrimination Act, 1992.
The doctoral research is 'The lived experience of ME/CFS: a
study in human rights and equity in tertiary education'. It
has forty participants from twenty-four of the thirty nine
Australian universities and eight TAFE/OTEN institutions. All
states and territories of Australia are represented. All
participants, without being asked, drew attention to the
adverse impact of the cognitive dysfunction of ME/CFS on their
academic experiences. The research reveals that no attention
has been given to making appropriate accommodations for this
symptom. The present situation is that the only symptom of
ME/CFS which is being accommodated in tertiary education is
The FDDA (1992), especially Section 6, Indirect
Discrimination, allows for all persons to have equity
accommodations commensurate with their disability. Further it
is not a legal defence to say that a person did not know of
their responsibilities under this act. Currently, medical
practitioners and disability liaison officers (often allied
health workers), who are not trained educators, are forced to
make assessments outside their areas of expertise on
educational outcomes. Trained educators, capable of assessing
the impact are not involved in the making of recommendations
for accommodation. This is the equity and cognitive
dysfunction dilemma in education.
research is to ascertain the lived experience of a group of
students in tertiary (post-secondary) education in Australia
who have the chronic illness of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and
assess their experiences from the perspective of human rights,
equity and quality of life. There seems to be a chasm between
the medical knowledge of a condition, and how it impinges on
academic progress. The complexity of the medical symptoms, and
their far-reaching impact on the ME/CFS student, has meant
that there has been many complaints amongst tertiary ME/CFS
students that their needs for suitable accommodations for
cognitive dysfunction are not being met.
The research methodology employed is critical ethnography (1).
This is exploratory research and, as the first research
conducted in a research field, it is not possible to commence
with a research hypothesis. Further questionnaires and surveys
are not appropriate for data gathering in a new research area.
2. The Research Participants
students with ME/CFS from all states and territories of
Australia, representing twenty-four Australian universities
and eight TAFE/OTEN colleges were accessed for their lived
educational stories. Participants were recruited through
personal electronic mails and also a general mailing to an
Australian internet ME/CFS listserv. Additionally letters were
written to the members of the South Australian ME/CFS Student
Telephone Support network list. Snowballing also occurred
where students and non-students contacted persons whom they
perceived could be likely participants. The state ME/CFS
Societies were not accessed nor were the Disability Liaison
Officers of the Australian universities.
had to meet the criteria of having been enrolled at an
Australian tertiary institution (post-secondary schooling)
post 1994, and whose medical illness complied with the Ramsay
1988 research definition (2) (with the additional six month
criteria of the Fukuda et al. (3) research definition for
ME/CFS). As Ramsay is a stricter definition than Fukuda, all
participants also met the CDC Fukuda criteria.
All persons who
met these qualifying criteria were accepted into the study.
The gender breakdown was twenty-nine females and eleven males
which approximates to the gender composition of ME/CFS as
found by Jason (4). The ages of the participants ranged from
nineteen to sixty-two years. The duration of ME/CFS was from
nine months to twenty-five years with a mean duration of eight
3. Data Collection
electronic mail access was not a qualifying criterion, and
ordinary mail was accepted, so as not to limit this research
to those persons with computers. It was apparent that the use
of electronic mail as the medium of research gathering was
popular with the research participants with only five persons
sending their stories through the post (5). A participant
wrote, when returning her consent form and initial
I am looking
forward to writing down my experiences, I am so glad you are
doing this research, it gives so many of us a voice. Most of
the time no one wants to know. (Nola)
4. Historical background
With the advent
of the new name for ME, coined in 1988 by the Centers for
Disease Control, USA, the focus changed away from the
encephalitic features of ME, to emphasis on the less serious,
but statistically more common symptom of fatigue (6). In the
public perceptions thereafter ME was thought to be merely
chronic fatigue (7). The encephalitic features have been
ignored or relegated to a secondary position (8). The present
situation is that the only symptom of ME/CFS which is being
accommodated in tertiary education is fatigue (9).
The cognitive problems of ME/CFS typically include poor
concentration and short-term memory, word-finding difficulty,
and inability to cope with multiple stimuli and then there is
fragile retrieval (10,11,12,13,14,15,16,17). Ramsay (16) says
that the person with ME/CFS is dogged by persistent profound
fatigue accompanied by a medley of symptoms such as headache,
attacks of giddiness, muscle weakness, blurred vision and/or
diplopia (double vision) and a general sense of 'feeling
awful'. Further physical problems may also intrude on persons
with the condition, such as the symptom of hyperacusis (16).
There may also be heightened environmental chemical
difficulty in saying the right word and are conscious of the
fact that they continue to say the wrong one, for example
'cold' when they mean 'hot'. Others find that they start a
sentence but cannot complete it, while some others have
difficulty comprehending the written or spoken word (2).
p.454) found almost a decade ago that:
sample had the following neuropsychological impairments: word
finding problems; subtle problems with receptive and
expressive aphasia, including intermittent dysnomias;
decreased concentration; distractibility, problems in recall,
verbal more than visual, including remote memory disturbance;
dyscalculia …; both gross and fine motor problems;
spatial-perceptual dysfunction, including losing their way
while driving; some abstract reasoning disturbance, primarily
non-verbal; decreased visual discrimination; and problems in
Preston (19) brainwaves, without warning, may change from beta
(thinking) to delta and theta waves, (associated with sleep
and pre-sleep states in healthy people) as sudden inexplicable
"power drains" during cognitive challenge. Others, such as
DeMerleir, De Becker, Peterson, Nicolson, W. Behan, McGregor,
Casse, Robinson, Kilburn, Komaroff (20) have drawn attention
to their own research findings in the areas of biochemistry,
microbiology, immunology, pathology, physiology and other
medical disciplines impacting on neurocognitive dysfunction.
5. Participant stories
participants wrote their personal story of experiences as a
tertiary student with ME/CFS. The participants were not
directed on what they had to write, and comments were not
sought about the cognitive dysfunction: yet every story ,
without exception, mentioned their difficulties in this area,
and the lack of understanding and accommodation which they
received, and which in turn affected their academic
achievements and was deleterious to their health (21). The
research reveals that no attention has been given to making
appropriate accommodations for this symptom.
This was the
most prominent problem for me - the cognitive dysfunction,
brain fog etc. As a tertiary student, you obviously are
expected to have some level of intelligence and be able to
'think on your feet' which is near impossible with brain fog.
How does one portray this to the rest of the young, fit and
healthy class, who are wondering why you are stumbling to spit
out a coherent sentence, especially when they know that
yesterday you could throw out thoughtful, witty comments along
with the best of them. (Vicki)
More time has to
be spent in encoding new information, yet on the day of an
examination there can be no assurance that this information
will be able to be retrieved and utilised, as mental fatigue
will mean that the brain has apparently shut down (22,23,24).
ME/CFS students colloquially call their cognitive dysfunction
'Brain Fog'. 'Brain Fog' occurring during an examination would
mean there would be great difficulties in continuing the
assessment. 'Brain Fog' has a variable duration, often lasting
into the next day. Most students, when 'Brain Fog' sets in,
call it a day, and know that it is no use trying to persist
with the examination. They find that paradoxically, trying to
persist will mean that they are only exacerbating the problem:
they are then faced with no other alternative than handing in
their paper and departing the examination room. Additional
time does not allow for this phenomena (25,26). And likely,
many academics and teachers, who had organised the extra time
for the ME/CFS student, are left puzzling as to why the
ungrateful student left the examination early without
completing the paper.
At the time I
found it hard to concentrate, sit for very long [so] I
requested another means of assessment or allowances for my
illness. The exam was to be three hours. My grades were good I
thought they would think I had valid grounds. I told the
[examination] officer that I was quite sick with CFS, and had
a Dr's certificate and needed some changes made. She told me
that she understood CFS but then went on to tell me that I
could do the exam in stages but would not be able to be let
out of the room. I then informed her that after a short time I
may have to lie down and it would take me a long time to
recover enough to start again…. I felt that she would
understand the level of my disability at the time. She told me
that I would have to lie in the corner, that was the only
thing she could do. There was no way I could lie in front of
around 150 male and female adult students and sleep to recover
on the carpet floor. I would have had to stay there for days
then! I decided that I would attend the exam and then do what
I could and leave. I left 1 1/2 hours early and did not get
the grade I would have if I had been well or by another
assessment method. I didn't know about a misadventure or
request for illness and I had lost faith in the system to help
me so I didn't ask any further at the time. (Kathryn)
this experience of Kathryn was not an isolated occurrence and
stories with similar content were collected from all states of
My brain had had
a good rest now… it seemed OK. But when I tried to introduce
it to this (to me) massive amount of new information it was
supposed to deal with - it collapsed and completely shut down.
I struggled to get through the readings for the subject, to
take in the concepts, but I just couldn't retain anything. I
found it fascinating and was desperate to learn. But even
though I went over and over and over everything, my brain just
couldn't take it in. My memory was still far from normal and
by stressing it in this way I made it far worse than it had
ever been before. (Rosemary)
things about exams, once you've got CFS, is that the longer
you have to prepare for them and the harder you work, the
sicker you get and the worse you do. So while other students
are checking timetables and saying 'Oh good, three weeks till
such and such,' you're thinking 'Oh no, what a disaster, three
weeks to prepare!' On several occasions I asked (and was
allowed) to do an exam as soon as lectures finished, sparing
myself weeks of illness and ending up with a better result.
But my brain
shut down and I lost short term memory. While at Uni I forgot
where I was and what I was doing on my way to the library. I
wondered, jokingly and not yet in panic, if I had developed
amnesia. I tried the standard test- what is my name - and
couldn't think of it. My reasoning was curiously impaired, and
I finally worked out how to get home from my limited memory
access. The next day I was fine. (Barry)
These are only a
few of the many extracts from the participant stories which
could have been presented here. It is immediately obvious that
these difficulties, which are being experienced by the ME/CFS
students, have a uniqueness about them: the interrelatedness
of ME/CFS with cognitive dysfunction and physical incapacity,
and the physical and mental requirements of assessment.
(Further participant comments in the endnote).
6. Disability Legislation
How can this
dilemma of academic assessment requirements be achieved,
whilst also extending equity and equal opportunity to the
ME/CFS students? This problem becomes even more acute when the
present legislation is taken into account. The Federal
Disability Discrimination Act (27), is the Australian standard
for assessing disability discrimination and in education
sections 6 and 22 are particularly applicable. Section 22 is
written to explain direct discrimination in the field of
education (27a). The Federal Disability Discrimination Act
(27b), Section 6 states:
disability discrimination For the purposes of this Act, a
person ("discriminator") discriminates against another person
("aggrieved person") on the ground of a disability of the
aggrieved person if the discriminator requires the aggrieved
person to comply with a requirement or condition:
(a) with which a substantially higher proportion of persons
without the disability comply or are unable to comply; and
(b) which is not reasonable having regard to the circumstances
of the case; and with which the aggrieved person does not or
is not able to comply.
Discrimination occurs when 'normal' students are able to
comply with a regulation/situation, whereas the student with
the disability cannot due to the nature of their impairment.
found that there were profound difficulties experienced by all
forty participants with cognitive dysfunction. These findings
are consistent with the research findings of those who have
used the CDC Fukuda definitions (28,29,30,31,32,33), and
others using this same definition).
Analysis revealed that generally Australian tertiary
institutions are aware of the provisions of Section 22 of the
Federal Disability Discrimination Act 1992 which is
specifically for education (27a). Evidence of apparent
infringements of the 'Federal Disability Discrimination Act'
1992 emerged from the research stories particularly in
relation to Section 6, which deals with Indirect
Discrimination (27b). There were also infringements of the
Students with Disabilities: Code of Practice for Australian
Tertiary Institutions, (34) by the institutions although
having inclusive policies in place. The institutions had
limited perceptions of disability which meant they focused on
accommodations for those students with visible disabilities
(eg. students with visual impairment, hearing impairment and
who utilised wheelchairs for mobility), where as invisible
disabilities, such as chronic illness, were overlooked. There
was also evidence of the medical model of disability emerging
which places the participant in the victim role, and affects
quality of life, human rights and equity issues.
The persons with
whom the students with ME/CFS have to deal with to obtain
accommodations are persons who are trained in diverse areas of
health, such a speech therapy, occupational therapy, nursing,
welfare work, etc. Students may also have to deal with the
faculty officer who has been given the task of finding
accommodations for students with a disability. The
accommodations are not designed to fit the students
disability, but rather how the student may be made to fit in
with the requirements of the institutions.
system means that the student with ME/CFS has to obtain a
medical certificate to obtain disability accommodations within
their tertiary institution. As ME/CFS is not accepted as a
long term disability this means that, in most institutions,
there has to be certification for each examination or
accommodation (35). The institution says that they make the
accommodations which are recommended by the student's medical
practitioner. The institutions have their guidelines (36)
which they use to make accommodations for ME/CFS which are
based on traditional precedent and also on their suppositions
of what they think constitutes the medical condition of
Chronic Fatigue Syndrome.
practitioner, who is requested over and over again to provide
certification, will usually name the diagnosed condition of
their patient, but is unable to provide details of how this
condition will affect the learning outcomes of their patient
in an educational setting. If a medical practitioner were to
do so they would be making education assessments outside of
their area of medical expertise. Hence it is neither
professional, nor even ethical, for a medical practitioner to
attempt to try and assess learning outcomes for the myriad of
tertiary courses. The medical practitioner will write the
certificate stating that their patient has 'Chronic Fatigue
Syndrome', and maybe, because of their patients prompting,
request additional time for their patient to allow for rest
periods (as allowed by the tertiary institution precedence
procedures to supposedly accommodate Chronic Fatigue
Syndrome). The tertiary institution will then implement their
preconceived stereotype program which has never been examined
for appropriateness nor based on research findings. Extra time
is the usual accommodation which is offered to ME/CFS
students, but it is obvious that this accommodation falls far
short of being adequate, and may in itself, even constitute
indirect discrimination, as many students could find that the
extra time allowed (making the examination of longer duration)
has actually worsened their physical condition. And another
question is also raised - how much extra time needs to be
allowed to achieve equity? The student's cognitive dysfunction
has been ignored and no accommodations have been made.
must be asked, should the ME/CFS student with cognitive
dysfunction even be sitting examinations? Given the medical
condition symptomatology, it is questionable as to whether
examinations are an appropriate form of assessment at all
(37). Certainly the provision of allowing extra time is not an
appropriate accommodation for all students with ME/CFS. No-one
can take away from the students with ME/CFS the symptoms of
this condition which affects them, but there needs to be a
thorough investigation of appropriate accommodation and
assessment procedures (38,39).
It is apparent
that ME/CFS students are being seriously disadvantaged, both
academically and with the effects on their physical health,
when being placed in the same category as other students with
chronic illnesses, or being placed along side of students with
writing difficulties, who need additional time. In fact, the
very use of examinations as a means of assessment must be
called into question.
practitioners are not able to write certificates for their
ME/CFS tertiary students patients which make specific learning
assessments to ensure equity accommodations, as it is outside
of their area of medical expertise. And the persons in the
tertiary institutions are not trained to be able to assess the
learning outcomes for ME/CFS tertiary students. Currently,
medical practitioners and disability liaison officers (often
with paramedical backgrounds), who are not trained educators,
are forced to make assessments outside their areas of
expertise on educational outcomes.
This results in
the current situation where ME/CFS students are not receiving
the appropriate accommodations to which they are entitled
under the Federal Disability Discrimination Act (27). Further
the act does not allow for the 'discriminator' to plead that
they did not understand they were discriminating (40). The
present system would seem to leave medical practitioners,
disability officers, academics and teachers vulnerable under
the Federal Disability Discrimination Act, 1992.
• Who can assess
the educational learning outcomes of the cognitive dysfunction
subject by subject?
• Who is responsible for equity?
• What can be done?
These are the
present dilemmas, dilemmas of a flawed system which is
incapable of making the appropriate accommodations which the
Federal Disability Discrimination Act (27), especially Section
6 expects and sets out. Many students could even challenge
this lack of equity. And if legally challenged where will the
fault be found to lie - in the system, or in the persons
implementing the system? There is the likelihood of a test
case in this area and the findings will be interesting. This
is the equity and cognitive dysfunction dilemma in education.
D. 2000c, Into Uncharted Waters: Considerations with
Chronic Illness Research. Paper presented at the CSMEE
Symposium, Contemporary Approaches to Research in
Mathematics, Science, Health and Environmental
Education, Deakin University, Melbourne, 27-28 November,
2001. Paper distributed at symposium. Proceedings
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Also at <
Morris, D. 2001d, What does academic assessment assess:
the case of ME/CFS? Paper presented at the Tertiary
Teaching and Learning Conference 'Tertiary Teaching and
Learning: Dealing with Diversity', Darwin, July 9-12,
Morris, D. 2001a, Report on the findings of the Lived
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available on video.
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memory recall for terminology was a difficulty, but the
excruciating myalgia pain was very severe. … I ceased writing
for half an hour. I did the remaining questions in severe pain
and headache - pain in my hand, arm shoulder, and neck, not
only in the muscles, but also in the nerves like a drill,
which was most distracting… I struggled to write - my hand was
numb and had pins and needles, and frozen in a cramp holding
the pen. …I could have cried with the pain. …The last question
I was too tired to think, too pained … , so I jotted some
points down. The pain was akin to medieval torture! PS. I got
HD! [top mark] (Elizabeth)
variations I have arranged thus far have included double time
and a 1 hour rest break, which was intended to be either short
rest periods or a longer rest if I needed to lie down.
Nevertheless, I have had invigilators who refuse to let me out
of the room, and it is very difficult to lie down in a small,
crowded, stuffy room - on the floor - and call it rest.
My memory and
concentration became very poor, and although I have some
native talent for dealing with things on the fly, when my
brain fogged too much I just lost it completely. The first
time I recall this happening was in Honours, and I managed to
just focus on the issue and ignore everything else (including
the fact that my vision had tunnelled and I couldn't really
see the room). (Barry)
My one remaining
subject, in second-year [subject name] had an mid-semester
exam …, which I think was worth 10%. It was a one-hour exam to
be held in our last lecture. I was having massive
concentration and memory problems and I knew I wouldn't be
able to perform normally on this exam, so I sought to be given
extra time - I applied for this through the Faculty office and
they granted it to me. However when I arrived at the exam, the
people running it did not have a clue who I was and in fact
there was no provision for me to have extra time. (Rosemary)
Extra time is
essential, but if you take too much, you are so exhausted by
the end that you can't function properly anyway. Going down
hill as you slog through the paper happens regardless. I
discovered this when I once looked at a computer programming
paper I'd done and found simple arithmetic errors peppering
what would have been the last half hour. I'd used the right
method but ended up with nonsense because I'd calculated 3 X 2
= 4, or some such nonsense. I also noticed that in the time
left at the end I'd 'checked' the paper and changed several
things to incorrect answers. From then on I never checked an
exam paper, even if I had time left. By the time I'd gone
through it once I felt so ill that any changes were bound to
be for the worse. (Marlene)
The nature of
CFS means that attendance to many lectures is not possible,
nor is the compulsory attendance to tutorials. Despite
requests for lectures to be taped, this has always been
refused. Missing more than 3 tutorials per semester
automatically leads to the loss of 15% of my final mark and
the preclusion from sitting Supplementary Exams (which may be
necessary due to poor health on the day of the exam). There is
no concession for the fact that having CFS makes it virtually
impossible to meet this compulsory requirement. Medical
certificates are accepted only if obtained on the day of
illness, which is rather difficult when my GP is a 20 minute
drive away and I can't get off the couch! (Tammie)
© Dorothy I W Morris, TSTC., HDT(Sec)., B.Voc.Ed.&Train.,
PhD Candidate, Faculty of Education,
Deakin University, Geelong, Victoria, Australia.
permission of the author.