Keys to the ABI cage
The lists in Fig. 9.1 present concepts at differing levels. Some are about attitudes (being positive, sense of humour); others are about outcomes (success, achieving hard things); some are in the metaphysical realm (spiritual support, love and intimate relationships); activities, environments and sentience feature (nature, environments); personal development and achievement (achieve hard things, working hard to achieve things, further study); others relate to support (seeking social support, seeking professional help); and belonging and identity feature strongly as do the hope for doing normal things and feeling like a normal person.
There are signs that the literature since this study was conducted that is beginning to reflect some of these arguments. Levasseur et al. (2016), for example, use a Human Development Model-Disability Creation Process (HDM-DCP) drawing upon an anthropological model of human development and disability. This model shares the notion of habits that was central to the arguments made earlier on in this chapter. The model sees such habits as the result of the person’s interaction with personal (identity, organic and capability factors) and with environmental factors (societal, community and personal). Habits cannot, therefore, form if factors prior to interaction remain confused or unclear, ‘…illustrating the circular and practical … dynamic and interactive process of disability and human functioning’ (p. 638). This cyclical process has its similarities to our notion of ‘constructive circumambulation’.
However, the model focuses on the individual without recognising that environmental, interactive, community and other concepts are interactively produced. It is the joint learning and distribution of competencies which makes a difference. Thus, the capacity of those close to create outcomes through interaction and to themselves learn how to do this is placed centre stage as a principle for service provision.
In short, none of the categories is any different from those we would expect of any of us. Why then should such hopes, aspirations and capabilities be so hard to achieve? Think again of your ‘‘looking’ glass role’. Had you identified any of these as having potential to help you feel and fare better?
A positive approach to ABI would privilege these ideas and would do so among key people in the person’s life.
Keys to the ABI Cage allowed people with ABI to easily identify phenomena that contributed to a satisfying life for them—to their psychological wellbeing, happiness and hope for the future. Yet the search for life satisfaction remains unresolved for many and in the literature too (Astrom, Asplund, & Aström, 1992). Participants emphasised the need to grow, to transform. Some were ‘deepened by suffering’ (Nietzsche, 1995). In the words of Helen Keller
Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.
and Martin Luther King,
Human progress is neither automatic nor inevitable… Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals.
Several participants felt that their life was enriched by their ABI experience; they now appreciated being alive, they were aware of their strengths and weaknesses and they now felt wise.
These beliefs or understandings also emerged through the interview process as a means of learning about ABI and applying new knowledge to themselves, reflecting on their life and gaining insight. This appeared to be a turning point for some participants in terms of their self-understanding and new pride in what they had achieved and overcome. The study identified that some participants had constructively circumambulated around the phenomena of ABI and worked things out for themselves: they had learnt that there were many Keys to the ABI Cage, that certain things affected their quality of life and that they had different ways of coping with their challenges. The ‘powerful experience’ of ABI had led them to acquire better insight into life. They felt wise. This is powerful information to pass on to others experiencing the life challenges of ABI.
The participants chose and talked about virtues and strengths such as: wisdom and knowledge, courage (accomplishing goals in the face of opposition), humanity (strengths of tending and befriending others), justice, (fairness), temperance (forgiveness and mercy, humility and modesty, self-regulation and self-control) and transcendence (appreciation of beauty, gratitude, hope, humour and playfulness and spirituality).Thus, subjective well-being is influenced not only by their physical, cognitive or emotional impairments but by their engagement with everyday life and relationships and by a focus on ‘what is strong, not, what is wrong’. These findings have subsequently been made available to people with ABI with the publication of ‘Unlocking my Brain through the Labyrinth of Acquired brain Injury’ (Durham, 2014) to encourage them to reflect and gain insight and have their own ‘Eureka moments’.
This process of ‘analysing’ that knowledge, the next in Anderson and Krathwohl’s (2001) stages, was found in this study to be transformative—but maybe not immediate. It takes significant time, rehearsal and re-rehearsal to make sense of what it means in terms of relationships and place. For example, in distinguishing the many words for ‘white’ in Eskimo culture you may ‘make many mistakes’ before knowing which white makes igloos, which is a fishing hole, which is unsafe and so forth. This is why safe spaces for applying, evaluating and reviewing that knowledge are required. In doing so, patience is needed for while the brain may be plastic, it will take time for new neural pathways to turn rehearsal into habituality. It is also why in developing new relationships the distribution of competencies between people with ABI, family, services and others needs to be negotiated. But learning new distributions of competence is as much about the learning of others as it is about the learning of people with ABI. Learning together, therefore, needs to be in context and applied to goals that become agreed over time.
For many, both people with ABI and family carers, this new distribution of competencies requires adaptation and maybe even dealing with grief and loss. For example, the centrality of employment to people’s identity and felt sense of accomplishment as well as the source of material comfort may be significantly changed (Sveen, Soberg, & Ostensjo, 2016). In the Keys study, five participants were working in different areas to their preinjury jobs, two participants expressed job satisfaction and four were studying. Some participants wished they could have career opportunities or work longer hours. Others who were not working wished to gain some employment and many had tried with great persistence to obtain work but could not.
Thus, unfortunately, few of the participants in the present study felt they had recovered sufficiently to be able to claim they had a ‘healthy and productive lifestyle, or had returned to work’. If only two out of the 36 participants were satisfied with current employment, this is indeed a grim reality for the future of this group of people with ABI if life satisfaction and coping equates to being able to live as they had lived and worked before their ABI. Coming to terms with this and finding positive factors to balance out this part of their identity was clearly one of the harder things to accomplish for many people.
This finding was in agreement with the idea that although concepts of the ‘personhood’ as ‘lost’ or ‘shattered’ have dominated discussions in the literature, that this ‘perspective is a crude representation of the post-injury experience of self, and the aspects of stability, recovery, transcendence and moral growth are also involved in this process’(Gelech & Desjardins, 2011, p. 62). Nochi’s (2000) categories also show how a person can come to terms with their new self and develops new coping strategies as identified in Chap. 4 (Kendall, Kendall, & Muenchberg, 2009). It is also why Linge’s (1990) suggestion to note and focus on small achievements is wise for all of us, people with ABI too.
Keys to the ABI Cage aimed to help people with ABI discover and come to terms with the new self (self-actualisation) by helping them to understand ABI, to feel safe, to belong to the ‘brother/sisterhood’ of people with ABI, to recognise their achievements and to have their achievements recognised by others. Identification of factors that positively affected their lifeworld assisted them to see their ABI experience with ‘new eyes’.
Findings from Keys to the ABI Cage indicated few participants mentioned the word coping; however, they could nevertheless identify Keys what could be classified as coping strategies (see 8.2.3–8.2.7). Lazarus and Folkman’s (1984) seminal work and Smith and Lazarus’s (1990) work centres round the notion that emotions are influenced by evaluations (appraisals) of events that cause specific reactions in different people.
People with ABI in this study wrote about a wide variety of coping strategies—more extensive than those recorded in most coping self-report inventories (see Chap. 4), indicating that self-report inventories may fail to assess the full nature of coping. The problems associated with self-report inventories have been documented extensively in the literature, yet the use of these inventories to assess coping is still widespread (Kendall, Shum, Lack, Bull, & Fee, 2001).
Participants with ABI in the present study identified a plethora of unique ways to cope with multiple challenging situations at any one time; physical danger; emotional spin-offs including their loss of confidence and loss of trust; and their belief that they are sad, mad and bad, afraid, ashamed and isolated and fatigued.
This study unravelled complexity, whereas coping inventories do not. It allowed choice by the person of those things that they could or might use as ‘appraisal’ devices and buffers against stress. The Keys, therefore, allowed the collection of diverse experiences and provided grounds for choosing how people can engage. By drawing on the ‘talk-about’ cards, which represent the range of experience, people reflected on strategies and approaches they do not presently use but ones that may be open to them.
In the face of adversity, challenge and exclusion, it is hard to bounce back, to demonstrate resilience (Garmezy, 1991; Luthar & Ziegler, 1991; Masten, Best, & Garmezy, 1990). With the supports implied from our findings, some participants could be said to have displayed ‘resilience’. Adversity can be applied to people with ABI, but competence is problematic if you are not competent to walk, talk, think or even eat as you once did. Positive adaptation involves skills, attitudes, awareness, acceptance of deficits and taking steps to adapt. These are not the normal attributes of a person whose life is changed by ABI.
Perlesz, Kinsella, and Crowe (1990) stated that few studies explore the experience of coping well and resilience after traumatic injury, and this still seems to ring true. Curran, Ponsford, and Crowe’s (2000) study provided evidence that coping strategies are associated with emotional outcome, and Uprichard (2010), using the person-centred global approach, found that participants felt less valued and judged by society and wanted the focus to be on enablement rather than disablement. This is also a finding of Keys to the ABI Cage study.
The Resilience Research Centre (RRC) uses a more ecological and culturally sensitive definition of resilience. ‘In the context of exposure to significant adversity, resilience is both the capacity of individuals to navigate their way to the psychological, social, cultural, and physical resources that sustain their well-being’(Resilience Research Centre, 2017). Given this definition and what was said about the use of Keys to the ABI Cage in providing a scaffold for coping, the same may be asserted around resilience. The Cage maximises the chance that people may find the resources through which to sustain their wellbeing.
The nature of this scaffolding and a reflection on ‘Keys’ to the ABI Cage is summarised below.
9.4 Scaffolding Learning—Summary for Readers, for People with ABI, Family Carers and Professionals
Scaffolding learning requires establishing the conditions to create a ‘headspace’ in which people feel motivated to learn. Building trust in relationships is the key to this as is patience and a safe space to try and to fail. Working on ‘what is strong, not what is wrong’ is crucial—a positive educational approach. The metaphysical concepts around love, intimacy, hope, beliefs, belonging and support are an essential holding environment in which all thriving is accomplished. Being negative, critical or providing complex or mixed messages or being punitive is counterproductive and is iatrogenic, contributing to loss of hope and, in worst case scenarios, to a feeling of trauma and abuse.
Learning is not a singular thing to make people ‘normal’. To create new habitualities means working with people in their natural settings with their everyday relationships, families, friends and others. Normality is defined by the groups through their actions—trying to make the person fit with pre-existing habitualities is likely to fail and to stress all involved. Similarly, competence does not just adhere to the disability. Rather competence is distributed and all parties must learn how this new distribution of competencies will work for the benefit of the group and in a culturally sensitive manner. Whatever each person contributes, no matter how small should be valued as, ipso facto, their contribution to the groups and its identity. Moreover, each situation will be different and so will require a different approach.
Professionals need to plan for diversity and not establish prearranged approaches imposed by authority and without listening to the voices of people with ABI, those which ignore each person’s peculiar circumstances, relationships and settings.
Since replicating pre-existing relationships is unlikely to work, adaptation, coping and resilience need to be major mechanisms through which all parties operate. This may also involve dealing with grief and loss.
In all forms of learning, a range of learning styles (intelligences) needs to be catered for in ways which make them understandable. The learning process that follows should draw on some of the concepts and any others that are not listed from this study as a positive mechanism for helping people to explore possibilities, options and their interconnections consistently.
The process of learning may be very slow and so patience is required. Understanding is supported by constructive circumambulation in which by drawing on appropriate concepts and ideas the person begins to test the complex interconnections making up their life. Habituated acts which glue people together in culturally acceptable ways take time to (re-)learn—rewiring the neural pathways may require rehearsal ad infinitum—but the brain has a plasticity the nature of which is as yet not fully tested, leaving hope that things can change.
Once understanding begins the opportunity to apply, analyse and evaluate follows naturally if the understandings have been worked upon in natural settings across the important relationships in each person’s life. At this stage, and reflecting back on Bourdieu’s concept of habitus discussed earlier, the stage of application, analysis and evaluation will draw upon all those resources—economic, social, cultural and symbolic, that are available and will seek to convert these into positive outcomes for the person and the groups within which they operate. It may be that in this approach the final element of Anderson and Krathwohl’s (2001) approach—creativity—may become a function of all parties including the person with ABI as they draw upon, co-ordinate and apply the capitals they have to their best advantage. The role of professionals will be in supporting the conversion of these capitals into outcomes.