Antecedentes

Social time theorists argue that we are continually projecting ourselves into “the

realm of the not yet” (Adam and Groves 2007, p. xviii), learning how to imagine our

futures from early childhood and extending our temporal horizons into the past and the future as we grow (Bell 1996; Stone 2012). We make plans, and are encouraged to do so - to think about what we want to be when we grow up and to make wishes for what we want to happen or to have (Markus and Nurius 1986; Adam and Groves 2007). ‘[D]uring each present the past we have already lived and the future we still expect to live play a central role in the way we experience, plan and act. Not only that, we have a relationship to our past, present and future; we take an attitude to our origin and destiny’ (Adam 1995, p. 19). This ability and constant interaction with

the future is argued to be implicit (Adam and Grove 2007), can be taken for granted, is overlooked and rarely analysed explicitly (Adam 1995; Grosz 1999; Shirani and Henwood 2011).

It is suggested that we assume that our lives will follow an ordered trajectory (Järvien 2004) and that the life we anticipate for ourselves is imagined dependent on our perception of ‘biographical certainty’ (Zinn 2004). In his book ‘Modernity and Self-

Identity’ Giddens (1991) explains that whilst questions such as “What to do? How to act? Who to be? ... all of us answer either discursively or through day-to-day social behaviour” (Giddens 1991, p. 70), making something of ourselves is “dependent on the reconstructive endeavours in which she or he engages” (Giddens 1991, p. 75).

66 This is achieved through engaging the reflexive self in an aim to build a consistent and stable sense of identity, using “key reference points [that] are set 'from the

inside', in terms of how the individual constructs/reconstructs his life history”

(Giddens 1991, p. 80).

Giddens explains that the ‘reflexive self’ grounds and organises itself through considering the trajectory of its lifespan, reflecting and learning from past experiences and then anticipating what is required for an “organised future” (Giddens 1991, p. 75). He details that in order to be reflexive, a level of self- awareness is required; the ability to be aware of oneself in the present, to be aware of both physical and emotional sensations. He also considers that in order to sustain and maintain self-identity coherence is required and this is achieved through the crafting of a continual narrative of self.

Giddens discusses the temporal element of the trajectory of the self, the importance of a continually reflexive narrative and explains how the reflexive self is crucial for the navigation and survival of various life events15_{. He states:}

“Negotiating a significant transition in life, leaving home, getting a new job, facing up to unemployment, forming a new relationship…all mean running consciously entertained risks in order to grasp the new opportunities which personal crises open up...such transitions are drawn into, and surmounted by

15_{The self, according to Giddens is a ‘reflective project’, its formation reliant upon the reflection of}

experiences, actualised through the skills of an individual to navigate its social world and create and maintain a coherent narrative. However, in order to achieve all of this the highest level of cognitive skill is required. For example, in order to reflect upon experience, build and sustain a narrative one is reliant on memory. This however can be highly problematic for people with SBI as memory loss and/or the ability to form new memories is common (Potvin et al. 2011; Palacios et al. 2012). Although a person with SBI may be able to remember their narrative before injury, they may not be able to build on it any further as they cannot remember any new experiences. This in turn would halt their progress towards self-actualisation. This however can only relate to those who have consciousness. Those in PVS or MCS are unable to sustain a sense of self at all. It is this problematic nature of the need for cognition that renders Giddens notion of reflexivity problematic within the topic and focus of this thesis.

67

means of, the reflexively mobilised trajectory of self-actualisation” (Giddens

1991, p.79).

Shirani and Henwood (2011) argue that the planning of ones’ own future is likely to be relatively unproblematic when our lives pan out the way we plan, but when something unexpected occurs that causes a disruption to the anticipated life course or is deviant to an envisaged possible self consequently forces a reorganisation and reimagining of the future. This can unsettle a sense of self and identity as ‘such

experiences challenge an individual’s ontological security derived from a sense of continuity regarding one’s life events’ (Shirani and Henwood 2011, p. 50).

The imagining of one’s own future is also argued to be based upon a ‘standardized life cycle’16_{, an ordering of life events and decisions which reflect societal norms,}

values and expectations. The level of standardisation of life cycles within modern society is however debated within the literature (Shirani and Henwood 2011). Elchardus and Smits (2006, p. 303) question to what extent standardized life cycles have been replaced with what they term as an ‘individualised life course’. Beck and Beck-Gernsheim (1995) and Neale and Flowerdew (2003) argue that traditional norms have been replaced with life courses which emphasise individuality and personal choice. Elchardus and Smit (2006) however dispute this, concluding that the evidence overwhelmingly supports the continual dominance of a standardized life course. Conversely Markus and Nurius (1986) argue that the imagining of possible selves is both individualized and socially influenced, in that poss ible selves are envisaged and crafted from a range of possibilities derived from sociocultural contexts, media and immediate individual social experiences. Therefore, cultural traditions may still influence elements of an individual’s anticipated future, possible

16_{A life cycle is a phenomenon has been conceptualised by sociologists as “a normatively anchored,}

man-made phenomenon that imposes regularity on life’s events and life’s decisions” (Elchardus and

Smits 2006, p. 303). Within the literature, the level of standardization of the life style is discussed in relation to different historical periods. The industrial era is highlighted as a period of “strong

standardization and homogenization”, resulting in what Elchardus and Smits (2006) call a standardized

life cycle. “The structuration of the life cycle is said to become characterized by the increasingly strict

sequence of education, work and retirement, or of the pre-active, active and post-active life stages”

68 self or expected life trajectory, but these are likely to be predominately built in relation to individual circumstances.

Although we may imagine how our own lives will pan out, and dream for things we want for ourselves, how we anticipate our future is likely to involve others and we may anticipate and have expectations of what we think the future holds for them too (Duggleby et al. 2010). Although it is argued that we may no longer be completely influenced by our shared cultural traditions (Mark and Nurius 1986) with regards to how we build and construct our imagined futures, I have argued elsewhere that ‘not

in our wildest imaginings would we ever conceive of ourselves or our loved ones sustaining a severe brain injury. This catastrophic ‘unexpected event’ however is the reality for some people and their families who experience huge upheaval of their own lives in the present and find themselves faced with an enormous discrepancy between the future that they imagined for their family member and themselves and the actual outcome’ (Latchem 2013, p. 19). It is within this context of a future never imagined

and the intense disruption of planned lives that this thesis is set.

While expectant mothers imagine a standardised life cycle ahead for their unborn child, the life imagined for children born with brain injuries is quickly reimagined and adjusted for them by others, taking into account the impairments they have. These children do not have a pre-injured self and so there is no fracturing of a past and present self – and no big shift (other than at birth) in terms of their future. This however does not mean that futures are not imagined for them, but that the major future adjustment is made at birth. Similarly, for those who are over 65 and are then injured, they have already had the opportunity to live out the future that they or others anticipated. While they may have foreseen and made plans for retirement for example, the major rites of passage (or the opportunity for them) have passed. For those who are aged between 18-65, those deemed ‘working age adults’, they have an established self, with both a past, a present and a well thought out imagined future. It is within this context of an established past and much ahead in an imagined future, the fracture between these two selves and the impact on individuals and their families that is of interest here.

69 The way in which futures are imagined, how these are socially influenced (irrelevant of the extent to which this is individualised or standardised) and the problematisation of disruption to the actualisation of imagined lives are conceptualisations which are taken up and used to explain experiences of health and illness.

A further body of work which highlights the relationship between futures and selves can be found within the body of work which explores eugenics and medical ethics (e.g. Turnbull 2000). These papers bring together the role of futures in shaping self and connect self and society through temporal concerns. They demonstrate the embedded temporality in both decision making for both individuals and societal concerns and actions (risk taking) taken in the now based upon a projected future. These papers are really useful as a demonstration of the way in which futures are lived in the now, shape action in the now and is one body of literature to which this thesis contributes. What this literature however does not show is how multiple actors’ future projections act on others within the same situation. This type of work has not previously been applied to brain injury. But, what do we know about care, time and health? – what does the literature contribute to understandings of caring and medical practices that may be useful here?

2.2.2 The exploration of lived time in everyday life: care, medicine and health care