By Anne Laney, Practice Manager

There cannot be many occasions in the history of the human race when so much of the global population is affected simultaneously, and so quickly, by the same thing. I am tempted to say no occasions, due to the nature, speed and scope of information sharing we are subject to in 2020. 

For me, two of the traits I have found myself exhibiting are rebelliousness and task avoidance and I have been using my own experiences from the last two months to force me to consider the implications and reflect on the details of the lives of many people with profound and multiple disabilities and complex needs before social distancing measures were imposed. I have already concluded that there are similarities that make uncomfortable thinking. I mostly have the ability to make changes to my life if I want. I share enough language and experience with my loved ones to be reasonably confident they will understand, not judge, and will support decisions I make. I’m not sure the same can always be said about the people whose history perhaps contains institutional care, neglect and even abuse. 

I recall two people in particular I have been fortunate to know who routinely “do” exactly what I want to “do” at the moment, and it is them I will use to illustrate how Intensive Interaction can be key to establishing common ground that supports the concept of “you can feel whatever you like” and “I’m here for you to get it off your chest”. It validates emotions however they are expressed. 

I have been drawn to re-explore the documentation created at the 2019 Intensive Interaction Weekend Workshop in Malham, organised and facilitated by Graham Firth. The subject for the weekend was ‘Using Intensive Interaction with people who exhibit demand avoidance’ and during our time together we considered in great detail what might be going on when people ‘don’t do what we want them to’, ‘decline to engage’, or seem to be ‘pushing boundaries’ all the time. The document can be sourced here.

We discussed the many ways people avoid many situations, ranging from having a meltdown or physically removing themselves from an interaction to withdrawing into their inner world: from becoming violent to switching sleep patterns to avoid contact with others. We explored why they might be choosing to be this way. An in depth look at the realities of life for people with PMLD, complex needs, autism and sensory processing differences soon establishes a series of threads common to all. Current circumstances mean many of these are now the experience of more of us. 

Quoting directly from the document, amongst other reasonspeople may avoid because:

  • They need to control a situation (possibly in response to some change or as a means of protection from something) and/or being unwilling to be controlled by others.
  • A ‘power’ issue, seeking power over those around who historically or currently hold power over the person.
  • A fear of the unknown, and a wish to avoid uncertainty; a fear of failure, of getting something wrong; a fear of being judged by, or of disappointing others.

Certainly I am able to see elements of these in myself. Having the ability to act on decisions I feel competent to make (akin to having control) removed, a fear of not being able to access my life in the way I could (which is similar to fear of the unknown). A closer comparison would no doubt highlight further similarities and I suspect that being judged and disappointing others is something I’m not prepared to address in myself just yet.

So, thinking about these two people who, through the way they chose to interact with us, illustrated to me both rebelliousness and task avoidance. Let me describe them.

Firstly, Jim.

As someone who has lived many years in institutionalised care, Jim seems to have chosen the route of most resistance in life! Strong minded, determined, mischievous, loving, speedy. The list of adjectives could continue and all would combine to give you a picture of a complicated, independent, and at times challenging individual. It is true that he often didn’t do as his support staff asked, resulting in occasionally confrontational interactions between them.

Having first met and worked with Jim thirty years ago, Us in a Bus were fortunate to still be visiting until only recently and, throughout that time the way in which Jim engaged with the world remained the same. 

Our time often consisted of him taking us by the hand and leading us vigorously and haphazardly around his home and if possible into the garden. Although mobile, he has a tendency to lurch in rather an uncontrolled fashion and we spent many discussions thinking of strategies that would minimize the risks involved. Engineering situations which encouraged him to be static were successful at times, but not always, and we had the distinct feeling he was, in some way, testing us. It was as if he was seeing just how far we were prepared to go to spend time with him. Of course, our Intensive Interaction hats mean we persist, stick with it and trust that the approach of giving control to our interactive partner reinforces their confidence and self-esteem. We maintain we were giving him the clear message that he was leading our interaction and choosing how we would spend our time together. We’d do whatever he wanted within the confines of health and safety, and share in whatever sensory, physical or psychological purpose it was serving. This recognised its importance to him and therefore its relevance to our time with him. 

In analysing this aspect of Jim, it seems clear that he is likely to have had few opportunities to be in control of much of his life, certainly when living in long stay institutions of the 1960s and 1970s. In recent years this has been addressed by him living at a fine home within which he is valued and recognised for the superb human being he is, but deep seated patterns have obviously been formed and he illustrates his need to revert to established methods of control at certain times. 

Further analysis of our time with Jim seemed to indicate that there was often a change of some sort around the time of his most unsettled sessions with us. Possibly a new member of staff, or a new bed, new sofa in the lounge or a new housemate. Reverting to things that have served in the past to keep control of what he can, would be an obvious solution. He uses what is, on the face of it rebelliousness, as a way of regulating his world. 

Secondly, Bob.

Bob’s way of avoiding interaction is far subtler than Jim. As a wheelchair user, physical distancing is tricky for him to initiate, so instead Bob seems to withdraw into himself. He restricts opportunities to make eye contact by closing his eyes and holding his head low, sometimes seeming to form a barrier with his hand in front of his face, sometimes with his fingers to his ears. 

We were fortunate to work with Bob for some years and, although his method of creating distance was vastly different from Jim, we did understand it to be of similar purpose. We thought he was testing us and we felt encouraged by this. That’s not to say we didn’t question constantly whether he wanted us there. We did, and we also trusted that Intensive Interaction, with its non-directive, supportive, “being there” approach, would prove to Bob that we did want to spend time with him.

Living in a loving and supportive home, with many opportunities for him to make choices and control those around him, meant that Bob’s “avoidance” came from a different place. Was he perhaps fearful? Who were we, what did we want and what would happen if he engaged with us? Could he do it wrong? What would happen if he did something different? It is of course impossible for us to know what Bob may have been thinking, and it is likely to be a combination of several of these things.

Gradually, with us constantly rebuking ourselves for ‘trying too hard’ and stepping back to the subtlest of interactions, Bob opened up. We heard his voice, saw his smile, received his hugs. 

To use a horticultural analogy, we planted and nurtured the seed of curiosity with Bob, but this was only successful because we cultivated holistically and organically. We didn’t impart huge amounts of chemical fertilizer in the hope of speeding up growth. In fact, Bob repeatedly reminded us that this was not how he blossomed. He turned inwards if we used too much. Less was more. The acceptance of this is fundamental to Intensive Interaction and gave us the tools to create a mutually trusting and fond relationship. 

So what can I learn from Jim and Bob? I hope my experiences mean that I have a more profound empathy for them. In all honesty, while this is true on an intellectual level, the nature of lifelong profound and multiple disability is vastly different to an enforced period of inconvenience. It would be foolish, insincere and inaccurate to liken my experiences of these times to any part of their lives. The comparison is useful as a reminder that I must continue to reflect on the questions life raises, in this case the life occurring during spring 2020, and recognise there are lessons that must be learned. I am tempted to add that how one teaches those lessons is another matter, and a far more complex and fraught process one suspects. 

Published by

Marilyn Anderson

18 May 2020

Linking Lives

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