The
role of occupational therapy in brain injury
At the time I came to work with Barry everyone was feeling helpless.
They did not know what to do with him. Clinical input had been
extensive, but was failing to make any significant impact at the
time that I met him (Neuropsychology report 1995). Huge amounts
of energy were being expended in managing the dynamics of the
team employed to work with him, while Barry felt that everyone
was engaged in his life except him; he felt displaced, miserable
and uncentred. It was impossible to get him out of the bed in
the morning because there was nothing to get up for. There was
a huge effort involved in pushing him into doing anything, and
nothing that he did seemed to lead anywhere. Everything felt pointless.
There was enough evidence to make me sure that it was an occupational
problem which he was facing. The particular occupation problem
that he had seemed to be a combination of the effects of alienation
and idleness. The result of which was that he was unable to get
properly engaged in anything and he did not know how to go on.
There were several reasons for this beyond the obvious one of
his head injury
There was the particular stage in his life when he
had the head injury. The majority of severe head injuries happen
to young men and with Barry this meant that he had finished
one stage of his life and had no clear idea of where he was
going to in the next stage. There was therefore nowhere for
him to return to following the brain injury. He needed to start
something and this is always more difficult than picking up
the pieces.
He had an intense period of rehabilitation, which
was very necessary, but which provided him with no cues about
what he needed to do next. It was a time apart and none of the
relationships with people or things that he did then had any
connection with this next phase in his life.
At the time of his head injury he had outgrown his
home and he was experiencing his home town as being a ‘bit
of a hole’, but that was normal at his age and it was
time for him to spread his wings. Someone who is forced to stay
at home past the stage when they have outgrown it will experience
a range of frustrations. The space will seem sterile, stimulation
will be gone, there will be a feeling of purposelessness, all
the cues for doing things seem to have been somehow removed,
the range of space will seem smaller and smaller, no matter
how great the actual physical space around. All of this and
more was what Barry experienced when he returned home after
his head injury. He was forced to stay at home for several years
because there was no other alternative for him.
Then he moved into a new environment, which had few
associations for him and which did not seem to demand anything
in particular from him.
The achievement of a package of care removed him from
any sense of connection with the need to provide for his own
subsistence. The normal things that people work towards were
all already provided by the care package.
The care package itself, although it was individually
tailored, was very intrusive. There was nobody adequately trained
to work with him.
At the time I started working intensively with him Barry was
intensely alienated and showing a real need for occupation. He
was somewhat involved in occasional leisure pursuits, such as
playing pool. Yet he was doing them without real engagement and
in this way they were also a form of idleness. This idle state,
more than anything else, was causing a profound sense of depression
and sadness. “Idling” has connotations of not being
engaged, e.g. the car engine is idling when it is not in gear.
Paradoxically, it is possible to do things and yet to be still
‘idling’ if the mind is not engaged.
It was not quite true to say that he wanted nothing. There were
things that he wanted, like a partner and some kind of meaning,
and neither of these things could possibly happen as outcomes
from the life that he was living. There was a very real fear of
beginning as well, which I have seen in people with brain injury
over and over as a therapist. This fear is justified, because
once you start engaging in the world there is no going back, and
this place of refuge where you are idling away can at least seem
safe. Who knows what adventure will befall you if you start to
do things? Someone with a brain injury has a very real cause to
be afraid, if only because a bad event has already happened and
may happen again. In the case of someone like Barry, the extended
battle for funding to provide him with some kind of support was
also a reason why he put off starting to engage year after year,
there was not enough support for him to begin to do so safely.
I am glad that the funding was finally achieved for him, but wish
that it could have come sooner. I have watched people with head
injury wait for 12 years before they begin to get any help and
at this stage it is almost too late, as the person by then is
paralysed with fear.
Burton’s analysis of idleness is a fairly precise description
of Barry’s state at the beginning of 1998. He had all the
“suspiciousness, the being carried away by fantasies, wanting
to leave a place as soon as he arrived, displeased with everything,
happy neither at home nor abroad, wandering and living beside
himself”. He was indeed ‘beside himself’ with
the effect of lack of engagement in occupation. He described it
well when he said that he felt like ‘a spectator looking
in on his own life, while everyone else was getting on with his
life’.
Finding the right level of challenge and support to motivat
the person with brain injury
Cowper in his poem ‘On Retirement’ describes brilliantly
the different ways that people might approach the state of idleness
brought about by retirement. He makes the point that compared
to the toil of idleness that it is much easier to be employed:
‘give even a dunce the employment he desires and he soon
finds the talents it requires'. Therefore those who said that
Barry could only engage in leisure pursuits (Neuropsychology report
1995) missed the point. It is true that Barry has low motivation
and poor cognitive skills, but given these facts it was much easier
for him to be employed than it was for him to live a life of idleness.
His eventual engagement in supported employment was an excellent
illustration of the fact that, given the right level of challenge
and support, he was capable of much more than the neuropsychologist
had assessed.
The amount of work which it took to set up a whole system of
care around Barry was one of the many things which displaced him
and caused a sense of alienation. This was inevitable, given a
funding system which only funds individual solutions, but it was
far from ideal. It would have been infinitely preferable if there
was some form of system already existing, which could have flexibly
met Barry’s needs. His case was not unique, and it was not
just wasteful to set up an individual system around him, but potentially
very destructive.
The fact that Barry had a problem with engagement was not simply
his problem as an individual. In searching for answers I was almost
immediately led to making a critique of the social forms which
he was expected (or not expected) to fit back into. It was both
impossible and senseless to demand that the ‘Barrys’
of the world should be a winners in a world which demand such
enormous cognitive flexibility. He simply could not become fit
in a way which actually causes enormous stress and distress even
among the ‘able-brained’. The kind of post-modern
world we live in is a real cognitive challenge for everyone. It
is difficult to find the rules by which we are to live our lives.
It is said that the law of the jungle rules, by which is meant
the law of greed. Marx pointed out the way in which the apparent
inevitability of this need was actually created by cultural forms.
The effects of such a society are to create an enormous number
of ‘losers’ who are then vulnerable to the effects
of alienation and idleness. As are the winners, I might add. This
alienation is intolerable to humans, and yet it seems to have
become part of the human condition for large numbers of people
in our society, whatever their status. The brain-injured person
is very vulnerable to this state, because they cannot cognitively
adapt to a range of new situations.
The problems of society in general were not part of my remit
here however. It is obvious though that the alienation also happens
at an individual level. It would not matter what the reason for
this, whether it was coming out of prison, or coming back to the
workforce after raising a family, there are certain problems about
coming back to grips with the world. In the case of the person
with brain injury however, because the very thing that is responsible
for engaging in occupation, the thing that you do it with, is
altered in some way. I liken it to getting used to a new tool,
which will only be shaped to the job after an extended period.
The mind exists in those areas that we do things, like working
or labouring or playing games. You really know that the mind is
different when you do things differently to the way that you used
to, when the skill that once existed does not manifest itself.
This is what makes the person - making the world and engaging
with it. The problem and its solution therefore exist somewhere
in that place where the person and the activity and the environment
all meet.
Next page: Becoming well occupied
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Abstract
Introduction
Methods and Ethics
Guestbook (to be enabled soon)
Brain damage stories-
Stories intro
Story 1 - The accident
Story 2 - The OT arrives
Story 3 - The CD rack
Story 4 - The troll
Story 5 - The door
Story 6 - At work
Story 7 - The letterbox
Story 8 - Employment
Occupation in Literature -
Literature intro
Occupation
Alienation
Being "well occupied"
The practitioner / OT
The person with brain injury
Discussion -
The need for occupation
Becoming well occupied
Facilitation
Ethical concerns
Occupation and neurology
Future research
Conclusion
Works cited
Bibliography
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Occupational
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