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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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