The role of the ccupational therapist in severe brain injury
is to facilitate occupation.
The question about a direction for Barry was not being asked
in a vacuum, any more than any question that there ever was about
a life direction. The question is partly a moral one, but it is
also one of expediency. There are not unlimited resources to support
Barry. There is always an awareness that the funding that has
been achieved for him has been won only after a long battle. Even
at a time that funding is adequate to the point of being generous,
there is still a duty to ensure that it is used efficaciously.
This is not just from the point of view of the funder, but also
from Barry’s point of view. The ideal situation for him
will be one where he has the highest degree of control possible
of his own affairs. As long as there is an expensive care package
being managed on his behalf, there remains cause for alienation
in his life. However, independence for its own sake is a spurious
ideal and what was being sought was some manner of sustainable
life for him. The work of facilitation was an attempt to achieve
this ideal. But what was the nature of this work? I attempt to
answer something of this question through the stories that I write
of our time together.
The job of facilitation would have been very different if it
was obvious from the beginning what needed to be done with Barry.
If he had known what he needed to do or if his family had known,
or even if had been obvious to the first facilitators who were
employed to work him, then this job would have been very different.
It might have been possible to envisage a job where the work was
simply one of training Barry in the use of his diary, how to budget
and some additional support in domestic chores. However, for all
the reasons I have outlined previously, this was a particular
kind of job because Barry had a particular kind of need. This
need was one of ‘knowing how to go on’. The work of
facilitation therefore had to be one of meeting this need.
It was not just a question of employing somebody and letting
them get on with it. If this had been the case the family, who
are highly intelligent and supportive, would have long since got
on and done it. The problem had to be envisaged as one of engagement,
before it was possible to employ and train people to meet that
particular need. The original facilitators had an extremely difficult
job to do and I want to describe something of that difficulty
in order to place the successful work in context.
Normally, an employment situation tells you what to do. You are
employed to do a particular job and somehow you get on and do
it. This is part of the jist of Cowper's poem on ‘Retirement’.
Generally, low paid positions do not demand high amounts of creativity,
yet this is exactly what was being expected in the people employed
to work with Barry. The young facilitators we were employing were
being asked to do genuinely creative work. With the best will
in the world, they simply did not know what to do. They were highly
motivated intelligent people, intent on doing their best for Barry,
yet they found their work was arduous in ways they could hardly
articulate and extremely distressing at times. They were often
left with nothing to do, especially on the days when he did not
get up.
The problem of engagement was actually very pertinent to them
as well as to Barry at this point. They managed to find some solutions
by stepping back into a caring role and they would do housework
and cooking for him. Yet, there was always an understanding that
they were not being employed to simply do a caring job and that
by doing this they were often displacing Barry from doing these
tasks. The other solution they tried was to share their lives
with him. But this was fraught, even with those who had a life
that Barry was interested in sharing with them. These situations
frequently brought about boundary issues and we lost facilitators
when Barry began to feel like an appendage and responded with
understandable anger. There were others who made huge attempts
to share their lives, but they had nothing in their lives that
that he was interested in. So, here they were, given the job of
engaging Barry, but without any clue as to what part they were
to take.
The quandary that they found themselves in led some of them to
wonder whether there was a job there at all, whether they were
really needed. They found different answers to this: some responded
with apathy and simply cut off from Barry, while going through
the motions of the job. Others responded by saying that the whole
care package was at fault and was simply unworkable. The solutions
that they put forward at various times were combinations of simply
leaving him to sink or swim, or putting him into a Psychiatric
hospital. These were not real options. Barry had already been
left to ‘sink or swim’ in his first sojourn in Rathnew
and he had resoundingly sunk. The idea of putting him into a Psychiatric
hospital was ludicrous, but it highlighted the fact that people
could identify that Barry would behave well in a system which
was completely set up. Going to a hospital, even if it were possible,
would simply put off the inevitable work of creating a life for
him. Others seemed to think that an expert could do the job better
than it was being done. I searched for this expert without success
and accepted that we had to do the job with what we had got, which
included myself in the position of coordinator
One of the things that facilitators had to cope with was boredom
as they waited on Barry to get started. They had to be assured
that they were still working even when it felt as though they
were doing nothing. Essentially they were facing issues of alienation
and idleness in their employment situation which reflected that
which was being experienced by Barry. There simply was nothing
there for them to participate in. This is one very good reason
why some kind of framework needs to be set up for this type of
work, because it carries risks of contaminating the worker with
the sense of meaninglessness being experienced by the protagonist.
Obviously, the problem that the facilitator has discovering what
part they are to take is not the same as the person with the original
problem, yet there is a real temptation for anyone in this situation
to put their own needs for engagement first. This is understandable,
given how intolerable the feelings produced by alienation and
idleness are for most human beings. Only an awareness of the issue
is going to prevent this and help the facilitator to keep the
focus where it belongs, on bringing about a sense of engagement
for the person who really has got the need. As long as this aim
is kept in mind it is possible to avoid the trap of putting ones
own needs first. An example of a situation where I seemed to be
more concerned about my own engagement than that of Barry might
have been the story where I had great fun collecting stones (in
the ‘troll’ story), leaving him feeling uneasy. An
example where I successfully brought about engagement for him,
while not seeming to do a lot myself was in the Rose story. That
was the time when I sat marking scripts at Rose’s place,
while Barry got on with doing the job. The success of what I was
doing became obvious once I left to go home. He lost the support
that he needed to do that particular job and they two of them
ended up ‘losing the plot’ a bit. It was nothing too
dramatic, the fact that two people chat is not the end of the
world, but the fact that someone like Barry loses time when he
is engaged well in a job is slightly sad.
Knowing what to do with Barry took a very careful assessment
of the whole situation. The first thing to be recognised when
working in this way is that there is no readymade solution which
can be applied to all. The initial assessment must be done carefully
and it will take time. As a therapist with only two hours a week
with Barry, at the end of 1997, the progress I could make with
him was very limited. I really did not get to know him and the
projects which I did with him had no connection with anything
which he wanted or needed to do. This approach requires significant
amounts of time in order to really assess the situation. The only
way to do this assessment is to spend the time on it. I had recognised
this fact from an early stage, because I spent a period of 24
hours with him when doing my assessment with him for the CPI report.
This was not sustainable, but it was obvious that when I spent
only 2 hours a week with him that I was not connected enough with
the situation to know how to direct it. The most time has to be
spent in the early days. Later on I came to spend less time with
him, and yet remained confident that I was still in touch with
what was happening because the initial work had been done. But
in getting to know Barry in a way which was really going to help
him to get engaged I needed to spend the time with him. In the
troll story it became clear that I got my sense of direction from
really being in the situation and being able to recognise what
needed to be done, which would fit with Barry’s skills and
interests.
This brings me to the point that often the outcomes from this
kind of work are of a nature that only becomes obvious in the
case of failure. In this case, my effect that my input was having
in keeping the situation stable enough for Barry to stay engaged
was only evident once I removed myself. In the “Rose”
story I was very clear about the need for success in this approach.
The real outcome from this approach is that he begins to know
how to go on, so success can only be gauged from the fact that
one thing leads to another. Failure does not enable this process.
It might be possible to learn from failure, but education is different
to occupation in this. There are very different outcomes being
aimed for in education and this was not what I was aiming for
with Barry. The outcomes that I wanted for him had to have a strong
base in reality as he was living it. Therefore, when he failed
to fix his sister’s bike, it was genuinely sad. There might
have been learning in this, but that was beside the point. However,
it does make the point that there cannot always be positive outcomes
from occupation. At times the outcomes will be negative and it
is important that one takes responsibility for the very real consequences
of failure. This approach is not a rehearsal or a preparation
for life, it is about the business of living. If it was anything
else it would not be possible to have available all the wonderful
associations that there are with occupation.
The fact that this is ‘real’, means that ethics are
a very important consideration. I learned early on that the skill
level of the practitioner was one factor that had ethical implications.
In the first story about ‘the lizard’ I was engaged
in a project of drilling holes in the wall which brought me to
the very limits of my (very limited) practical ability. There
was a real danger of failure in this project, because of my lack
of skill and I therefore came to recognise the need to employ
someone who had those kinds of skills. The need for success is
paramount and the risks of failure were very great in the ‘Rose’
story. The risks were there for both Barry and Rose, both of whom
where extremely vulnerable. There was therefore a very strong
onus on me to ensure that the job was well prepared and supported.
These were ethical considerations.
One of the most important ethical considerations is deciding
whose needs are going to be met in the situation. I have talked
at some length about the way in which the practitioner might confuse
the issue in a situation where their role was extremely unclear.
In this case there is a real temptation to have a good time oneself,
and blame the client if they have not engaged in a satisfactory
way. This will not happen if the need which is being met is clearly
identified at the beginning.
Accountability is another issue which as ethical implications.
I was really accountable, because I knew that I would have to
be working with a very distressed client if I had not succeeded
in bringing about engagement for him. This accountability is very
similar to the kind that occurs in a family, where the concern
for another member is intimately wound up with one’s own
well being. If one is going to be accountable it is necessary
to stay around long enough to be involved in the consequences
of one's actions. This is very clearly not a framework which would
suit a consultative model. The demands of the activity itself
hold us accountable. The troll which was sitting in Barry’s
workshop for those months was holding both him and the facilitators
accountable by its presence in an unfinished state.
The fact that one is accountable does not mean that there are
no boundaries. The boundaries are those which are inherent in
the part which is being taken. I can get close to Barry and spend
a lot of time with him, while I still take the part of a practitioner
putting his needs above my own. The boundaries again are dictated
by the activities which we are doing together. In helping him
to put up a CD rack I do not need to know every intimate detail
of his emotional life, and he does not need to know mine. In working
for Rose he can chat with her in a way which supports the work
being done, but it does not have to go on for hours and it has
lost its boundary when it begins to interfere with the work being
done.
Facilitating occupation in severe brain injury is not just about
training carers, rehabilitation, friendship, teaching or caring,
although it can include aspects of these
Not a friend
The boundary comes from the fact that his needs remain uppermost,
and that my job is to facilitate his engagement rather than my
own. For example, one of the outcomes which can come about through
engagement in work/labour/job is a particular type of relationship
with people, which I describe in the literature review. In a job
/ labour situation there is the possibility of a ‘matey’
relationship, based on a situation which is held in common. It
is foolish if I pre-empt this outcome of relationship, by attempting
to offer this relationship with myself. My job is one of facilitation
and so when he has a work situation which is successful enough
to be able to offer relationships, it is time for me to consider
moving further away. However, if I am the person with whom he
is having the relationship, then to respond to success by removing
myself would simply put him back into a situation of need again.
The boundary comes from the realisation that I cannot be one of
the outcomes for him, the relationship that I have with him is
one of occupation practitioner. I can have a great sense of duty
within this position, and the work itself requires a long term
commitment, but the relationship itself must always remain boundaried.
The work of facilitation is therefore not one of ‘being
a friend’.
Not caring
The work of facilitation is not simply a matter of support or
'caring' either, although caring is a very important part of what
is done. For instance, in ensuring that Barry was engaged in things
which were going to give him the desired outcomes, it was frequently
necessary to take on the burden of some of the self maintenance
things he would normally have had to do. It might be necessary
to make his breakfast for him in the morning, because he would
otherwise be too slow getting out to a job. This support was part
of the work that was needed to bring about his engagement, but
it should not be confused with the actual job of getting him engaged.
As part of the support which has been given to him there has been
work done on building a beautiful and easily run home for him,
and there has also been a great deal of work done on maintaining
his home and his place in it. This work of support mirrors in
many ways the work / labour / job aspects of doing things, as
described by Green. However, it is important to recognise that
these things were engaged in by people other than Barry. He cannot
therefore benefit from the outcomes except in a peripheral way,
and his engagement has not been facilitated in all of this. I
have made the point previously that sometimes the work of supporting
him could actually work against his sense of engagement at time,
(everyone is busy with his life, except him) unless it is done
very carefully.
Not rehabilitation
Neither is the work of facilitation the same as rehabilitation.
I outlined the T diagram in the Introduction, which is published
here for the first time, as a way of describing the difference
between therapy, which is preparation for engagement, and occupation,
which is the bringing about of that engagement. An example which
is pertinent to the work which I did with Barry is that of his
diary. As a therapist I worked very hard to habituate and train
him in the use of his diary, I organised the way it was laid out
and ensured that facilitators understood its significance. However,
this work was quite separate to the work of organising a life
in such a way that there would actually be things to put into
that diary. Similarly, as a therapist I have worked very hard
to train him to a concrete understanding of money. I have set
things up so that he uses only a certain amount of money a week,
so that he saves a certain amount and a certain amount is spent
on food. However, this is very different from the work of bringing
him to a place where he can have a real relationship with the
means of his subsistence.
Not a teacher
Neither am I his teacher. I do not just educate him to find a
life direction, I actually go along and put his feet on the steps
and walk some of the way with him. This makes me an ‘occupationor’(sic)
and not just an educator. It is likely that most of the work that
I did with Barry could be put into an educational framework as
much as into an occupation one. He was, for instance, constantly
having to extend his skills. Within each task however, I was insisting
on an occupation focus. The thing needed to be done, it was not
being done for practice and the matter of success was always critical.
This was especially the case when he was doing the jobs for Rose.
He needed the associations which came with the completed task,
although he might also have been honing his carpentry skills.
These were real jobs and not simply a practice run. This focus
on the real need which was being met is what differentiates occupation
from education here.
Not just training carers
In training facilitators/carers it has been very useful to have
a good understanding of the different approaches that there can
be to working with people who have a brain injury. It has also
been very useful to have a reasonably good understanding of brain
injury itself. This is not because I was tempted to try to change
the fact of the brain injury through rehabilitation, but because
it helped me to understand the immutability of the changes to
his brain. I was able to support facilitators towards an understanding
which was less judgemental than it might have been. Keeping the
fact of the brain injury in mind, while insisting on successful
outcomes to engagement, was the course which I steered. It is
important to ensure that the correct assessment also is made of
the situation. A knowledge of brain injury and the various approached
to it allowed me to be reasonably confident that the problem which
I was dealing with was one of engagement. I have not described
all the times when I was swayed from this belief, but invariably
I have found that I could safely return to a focus on activity
as the primary focus, and everything else as factors which simply
needed to be taken into account. A large part of my role as practitioner
has come to be a maintenance of this focus in the face of an,
at times. overwhelming desire to categorise Barry in other ways.
These ‘problems’, for example those of anger, depression
or inappropriate sexuality, I have chose to see as symptoms of
a lack of engagement in activity, rather than as the core problems.
This diagnosis of the origin of dysfunction is, of course, part
of my role as practitioner.
Facilitating occupation for the person with severe brain injury
includes an understanding of reciprocity
Part of my work as practitioner in this case has been to reflect
back to Barry what we have done together. This is one of the ways
in which full participation in something manifests itself. In
writing the stories, there was light shone on the meaning of what
we had done and I now see the stories as a necessary part of what
was done. In fact I now believe that I would not have done my
work with and for Barry if he did not have some manner of reflection
back from what he has done. I have always been puzzled by what
is meant by the word ‘insight’, especially as it is
related to people with brain injury. It seems to be some punishing
kind of self knowledge, which is not at all desirable, and yet
which is held out as some kind of holy grail. If this ‘insight’
is applied in some way to a shared knowledge of our common human
condition, then I find it much more acceptable. In this way the
stories which are told here have revealed my part to me in a new
way, and this part involves sharing what I have produced in some
way with Barry. The analogy can be drawn with a thank you letter,
a thing which is bound around by custom, so we know exactly what
to do.
There is a discipline to the reciprocity involved in a thank
you letter that has to be taught and which is the custom of our
community. We would be mightily indignant if the we gave present
was not acknowledged, as a receiver we would be thoughtless in
the extreme not to acknowledge it. There are at least two reasons
for not acknowledging the present. One might be that the receiver
has not yet learned to take their part in the community to which
they belong, they are still at the childish stage of imagining
that they will take, forever, without giving anything in return.
The second is that they do not have the means to respond –
they are in solitary confinement without any pen and paper and
no way of sending a whisper beyond the bars of their jail; or
maybe they have a brain injury and the gathering together of writing
utensils is a feat beyond their cognitive capacity, because they
are in a barren place without these things available. Maybe they
cannot remember long enough to connect the present with the person
who sent it, because the present has been removed and there are
no reminders of the person.
I feel that I have been in the position of a child who has not
yet learned how to respond adequately within the customs of my
culture. It has taken me so long to see the ways in which I can
respond in a way which is just right for the situation that I
am in. Yet I have not been like an anthropologist, feeling my
way through a strange culture and learning its ways. There has
been no way laid down here, I entered into a situation which seemed
to offer no patterns or rules. A place which felt bereft and alien.
Over time I have found that there are patterns and rules if you
look at what you are doing closely enough and I think that I am
beginning to get the hang of working with this person with severe
brain injury and this brings me to the point where ethical concerns
need to be dealt with.
Next page: Ethical concerns
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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
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