Christine Durham and Paul RamcharanInsight into Acquired Brain Injuryhttps://doi.org/10.1007/978-981-10-5666-6_2

2. Understanding the Assumptions of Major Models of Disability Theory

Christine Durham¹ and Paul Ramcharan²

(1)

Eltham, VIC, Australia

(2)

Future Social Service Institute, Centre for Applied Social Research, RMIT University, Melbourne, VIC, Australia

Christine Durham (Corresponding author)

Email: cdurham@talkaboutchange.com

Paul Ramcharan

Email: paul.ramcharan@rmit.edu.au

Everything is vague to a degree you do not realise till you have tried to make it precise.

Bertrand Russell.

2.1 Introduction

The Foreword introduced ABI through Durham’s personal experience. The co-author, Ramcharan, has been involved in funded disability research for 25 years. He was involved in research of the All Wales Strategy for the Development of Services to Mentally Handicapped People [sic] 1983 (see Felce et al., 1998) and co-directed the Learning Disability Research Initiative, a two million GBP strategy involving thirteen projects designed to support implementation of Valuing People (2001), a national intellectual disability government policy in England (see Grant & Ramcharan, 2007). Paul’s work for over a quarter of a century has melded an interest in the everyday life experiences of people with a disability (Ramcharan, Roberts, Grant, & Borland, 1996), and advocacy and voice (Goodley & Ramcharan, 2010). The interest in everyday lives and the everyday struggles faced by people with disabilities was a key basis upon which this exploration of the life experiences of people with ABI was both interesting and, at the same time, challenging. Durham’s work was, therefore, immediately of interest leading to both his supervision of her Ph.D. and his contribution to this volume. Both share the passion to seek to change lives for people whose struggles are grounded in their social circumstances as much as their biology.

Chapter 2 provided a review of Websites, books and blogs written by people with ABI, supplemented by a consideration of the information and resources most readily available to people with ABI.

The period over which mending bodies and re-establishing basic skills take place can be variable. One guide to TBI suggests written by a neuropsychologist using ‘psychological tests’ suggests that

research on these tests indicate that for two years following a head injury, there is evidence of improving scores. After this period…I can no longer see large changes in scores (http://www.tbiguide.com/getbetter.html)

More importantly, many people with ABI recount this as an early inpatient response to the question of how long it would take them to get better. From the perspective of the professional (the outsider), this time frame is ‘golden’ insofar as the greatest recovery is presumed to happen within this time, and it attracts the greatest professional input designed to mend bodies and re-establish basic skills. It is analogous to the ‘golden hour’, directly after a traumatic injury when there is greatest likelihood that prompt treatment will prevent death. Although recognising its limitations, we shall for brevity, therefore, use the term ‘golden period’ to refer this two-year period, or thereabouts, directly after the person acquires their brain injury.

We also use this term to contrast with the views of people with ABI. As shall be seen, from the perspective of the person with ABI (the insider), this period is far from golden—it is the ‘dark hole period’—the time of greatest pain, loss and despair as Durham has found in her continued engagement with people with ABI over the years.

Depending on the cause of the brain injury, for example, a car accident or a fall causing broken bones some people with ABI are hospitalised. Others suffer brain injury and it is not diagnosed, and/or they are not hospitalised. Some spend a short time, others months or years in hospital depending on their injuries and/or severity of the brain injury. Except for people with severe brain injury, at some time during the ‘golden period/dark hole period’ of medical and rehabilitative attention, most people with ABI go home to their communities where they have to mend their ‘fractured lives’. Examples of information and resources that are typically available for people with ABI and their families have been examined, but from what source does this information come? Upon what assumptions is it based? This is the question that preoccupies us in the following three chapters.

We show that many of the categories of understanding in the information on Websites are drawn from what might collectively be termed a biopsychosocial model encompassing a majority medical model input. We also argue that this more formal academic engagement around ABI has significant blind spots, that it is preponderantly negative, that it predisposes to only certain professional interventions and that in so doing it misses solutions to the everyday support required once a person moves home from hospital or rehabilitation. By exploring the underlying theory, models and information, this review seeks to re-frame the approach on sound alternative assumptions, and to further inform and populate the methodological tool Keys to the ABI Cage that is used in this study.

In the first section of this chapter, some of the theoretical frameworks around disability are discussed and two broad categories are identified, the body-object view of ABI and the body-subject view of ABI. The dominance of the body-object view, it is argued, is not inconsequential. The results of such a view continue to objectify people, to obfuscate any interest in the complexity of their everyday lives and, as a result, to miss what is most important—the person behind the theory and behind the actions consequent to the theory when applied. The remainder of this chapter will then examine features and assumptions of the body-object view, including research into ABI, leaving a focus on building the body-subject view for the chapter to follow.

2.2 Differences in Perspectives of Disability

Man has become less rational than his own objects, which

now run ahead of him, so to speak, organising his surroundings

and thus appropriating his actions,

Jacques Baudrillard.

As already mentioned, it is all too easy to slip into a view that damaged brains produce damaged emotions, damaged behaviour, damaged communication, damaged interaction…damaged people…disabled people. The following introduces philosophies and ways a person with ABI can be viewed.

2.2.1 The Body-Object Model

‘The body is our general medium for having a world’

MauriceMerleau-Ponty, Phenomenology of Perception.

The roots of the distinction upon which we draw in this volume have a significant past, lying in broader philosophy, at least since the Enlightenment.

Naturalism and idealism as competing epistemologies have been in contention since Schelling, Kant and the later phenomenologists starting with Husserl who questioned Descartes proposition about the measurement of the object world through science. The competing traditions pit the pursuit of the factual world in the capacity of science to intercept, define and hence find meta-theory, against the idealist view that the reality of external objects cannot be subject to proof. The idealists’ world is mediated by our consciousness, and it is only through such consciousness and intention that the world comes into existence.

In this way, even the hard fact of a ‘stone’ is not, for the idealist, defined through its scientific properties, its physical properties, chemistry and origin (igneous formed from fire and sedimentary formed from the compacting of layers). Rather, the stone may be the object of an aesthetic interest, and it may be a weapon in certain circumstances, evidence of the likelihood of a particular presence such as oil or gold, and so forth. In this way, the stone exists only by the intention of its use, by the conscious intention of the actor.

From one point of view, what is important for the purposes of this volume would be the external and defined fact of acquired brain injury. From another point of view, what is important is how we come to know acquired brain injury through consciousness and experience. The result of our epistemology is consequential to our understanding of the world, our ontology and, more importantly to the choices we make in intercepting and working upon that world. As Merleau-Ponty (2002) argues ‘to understand is to experience harmony between what we aim at and what is given, between the intention and the performance—and our body is the anchorage in the world’ (Merleau-Ponty, 2002, p. 167).

According to the French phenomenological philosopher Merleau-Ponty (2002), the view we have of the body plays a foundational role in the way we understand and engage with the world. He wrote of difference between the ‘body-object’, as determined and predicted by medical science, as the outsider’s perspective, and the ‘body-subject’, as the body as we experience it, the body that gives meaning to the world around us, as the insider’s perspective. An outsider or etic (Pike, 1954) description of an observed behaviour or belief often holds a different perspective or philosophy to that of an ‘insider’ (emic) (Pike, 1954). Just as body-object proponents rely upon Cartesian dualism and the separation of the body as an external object from its observation, so the body-subject proponents see object and subject as one and the same, i.e. as people see things, so they are.

However, even within the bifurcated category, body-object or body-subject, which is used to structure this and the following chapter, there are many different philosophies, ‘models’ or belief systems that have evolved, define and fundamentally affect the way in which the individual with ABI is viewed and treated. Perception of ABI is dictated by the dominant belief, model or ‘lens’ through which the individual, the medical or rehabilitation professional, family member, friend or the general public views, considers, assesses, or judges the person with ABI. These different beliefs can affect the way outsiders regard and behave towards the person with ABI.

Disablement models that developed in the twentieth century ‘defined the meaning of terms we use every day, and that do not always exert a positive effect upon the people to whom such terms refer’ (Masala & Petretto, 2008, p. 1242). So before reviewing the ABI literature, it is essential to discuss the place of theoretical systems in research. As a researcher, do such frameworks dictate the approach and limit what I want to observe or measure? Should a theory be used as an apparatus to interpret a person’s world? Or should we be looking in our data for the ways in which people themselves construct their own realities and mould something out of these accounts? These questions are not inconsequential because they have a bearing upon how interactions take place between people, one party to this interaction being a person with ABI. It is, therefore, also relevant to the method employed in any study of people with ABI including the present study.

Below, we demonstrate the points made above by exploring and considering varying theoretical views of disability and their corollaries and consequences.

2.2.2 The Moral Model

The first and oldest model of disability is the moral model. In this view disability is a defect caused by a moral lapse or sin.…it brings shame to the person with the disability, (Olkin, 1999, p. 25)

“Macbeth: How does your patient, doctor?

Doctor: Not so sick, my lord, as she is troubled with thick–coming fancies that keep her from rest.

Macbeth: Cure her of that! Canst thou not minister to a mind diseased, pluck from the memory a rooted sorrow, raze out the written troubles of the brain, and with some sweet oblivious antidote cleanse the stuffed bosom of that perilous stuff which weighs upon her heart.

Doctor: Therein the patient must minister to himself.”

—William Shakespeare, Macbeth

People with disabilities have been recognised as ‘different’ and treated according to such differences for many centuries. Recognition and veneration through the ages, of ‘gifted’ savants with prodigious abilities beyond the population at large (Treffert, 2014) and, since Athenian times¹ (Penrose, 2015) a consistent recognition and support for those disabled in the military service of their country, represent but a small minority of cases resulting in ‘positive regard’.

More often than not the effect of such ‘difference’ has resulted in treatments that have produced troubled lives, impoverishment and a life quality for which none of us would choose to queue. Through the ages, people with disabilities have, inter alia: been seen as ‘possessed’ or ‘children of the devil’ (leading to exorcism, bloodletting and being burnt at the stake); subject to infanticide (and death); treated as freaks (leading to fair game for circus sideshows, commodification and humiliation); perceived to belong to the class of ‘moral degenerates’, (such as prostitutes, criminals and beggars who have traditionally attracted the interest of the corrective services); argued to be a threat to the national gene pool (leading under a eugenic argument to both mass murder in Nazi concentration camps and to enforced separation of males and females in institutions); rated as ‘unemployable’ (leading to their occupancy of poor houses and later institutions); and, latterly, accepted to be legitimate beneficiaries of welfare (having to declare their disability to access additional support services), (see e.g. Thompson, 2010; Metzler, 2013; McClimens & Richardson, 2010; Nielson, 2012; Bogdan, 2014).

For most of history, humanity has perceived the trouble as lying with the person with a disability whether by possession, incapacity to work, moral degeneracy and more recently in their biology. How might we better understand this sad history, through which the morality of public and Government views have separated, labelled and denigrated one significant group of humans? One way is to consider the links between Government, economy, knowledge and public sentiment (McClimens & Richardson, 2010).

The lack of engagement of Governments and people with disabilities prior to the middle ages meant that the treatment of people with disabilities was likely to be a product of community sentiment. Such sentiment would have been diverse across regions, but would almost inevitably have included issues around systems of religious belief on the one hand and economic security on the other. Given the unpredictability of agrarian modes of production and technology, capricious climates and insecure tenancy, the economic circumstances were often highly testing.

The confluence of living on the edge of survival, alongside religious views of possession might, in the absence of other options have led to people with disabilities being left to die or to infanticide or exclusion, e.g. being treated as possessed. The very survival of people with disabilities was, therefore, at issue and exacerbated by very low levels of medical proficiency. Often, the family mediated the experience of relatives with a disability by controlling interaction with the rest of the community. Families, it should be noted, have consistently been a vital support mechanism through the ages. But for people with disabilities, life was tough and, for many, all too short.

The emergence of new nation States in Europe in the middle ages saw the protection of land for the nobility, giving rise in 1325 to Prerogativa Regis (in the prerogative of the monarch) in which land was held for ‘idiots and natural fools’ for the land-owning classes, though no provision was made for those without land. In the absence of such support from families, people with disabilities were likely to be driven to vagrancy, prostitution or shelter in the monasteries from which they were ‘sent to beg “cap in hand”—the source of the term Handicap—for charity’ (Ramcharan, 2016).

The moral model of labelling views the person with a disability as being responsible for both disability and the treatment accruing given the adopted moral position. The religious model has, in the past, been an extreme model where disability is viewed as punishment by God, or a supernatural force and was common in the Middle Ages and particularly during the Inquisition. It was often seen as resulting from their immoral actions the person or those of their parents. Although the moral model of viewing ABI can be seen as ignorant, some insiders privately still hold onto this perception (Durham, 1997). This influences well-being and self-efficacy for people with ABI. Some outsiders behave towards insiders, people with ABI, as if they are being punished by God, or because they had ‘asked for it’ by engaging in reckless behaviour, driving dangerously or taking drugs, for example (Durham, 1997).

It was not until the Elizabethan Poor Laws in the UK in 1601 that the roots of welfare can be identified. The landed gentry now operated in smaller identified areas termed parishes. Since taxes were essential for parishes to thrive, it became necessary to identify the ‘impotent poor’, i.e. those unable to be economically productive. The resultant laws represented the first recognition of the State’s responsibility to support the deserving poor. To be deserving of ‘alms’ or handouts, it was, therefore, necessary to be defined or to self-define as disabled, a welfare model that lasts in some shape or form to the current day. By doing so, the government social policy and administration of disability separated people with disability from the population at large providing a serviced existence for those eligible.

The alms offered from the earliest times were not enriching but based on the principle of less eligibility, i.e. that they would not match the level of wages for employment (Claeys, 2000). Furthermore, this ‘economic model’ distinguished between the ‘employed, unemployed and unemployable’ (Scull, 1989, p. 219). In this model, the person’s inability to work and the consequences of this for the individual, employer and Government are established as a basis for social policy. This model was used primarily by policymakers to assess distribution of benefits and to counter fraudulent claims, but this model can lead to confusion and lack of coordination in disability policy. Another important dimension of this model is that by declaring themselves disabled, the person effectively declares themselves unemployable, the result of which means they are more likely to be confined to the financially disadvantaged sectors of society or, later, institutions.

More particularly, from a social policy perspective, the person with ABI is seen as a victim of circumstances, deserving pity and the recipient of charity due to the tragedy of their disability. The emergence of the Poor Laws in the UK, for example, demonstrate how the tragedy/charity model of the 1800s involved the transfer of the responsibility of giving alms from the Church to the government. Workhouses run by local governments housed the unemployable and in some cases the unemployed. The charity model views the disabled including those with ABI as having a tragic, negative and miserable existence. Through raising money and resources, somehow the suffering and sadness of the disabled person’s lives would be reduced (Oliver, 1990, p. 1; Swain & French, 2004). This model lasted for nearly two centuries, although both the Enlightenment and industrialisation played a significant role in once more changing the living circumstances of many people with disabilities.

The advancement of science as the Enlightenment unfolded, heralded longer working hours and progressively harder manual labour in the industrial sector, as well as the growth of bureaucracies and more ‘brain work’. Agriculture was increasingly mechanised and people moved in droves to cities to provide industrial labour. States too, were changing. Having established the place of alms or welfare, there was now a gradual extension of suffrage, i.e. voting rights. The Poor Laws in the UK from 1834 reflected this widening suffrage and the need to cater for more than just the landed classes led to a focus on the interests of the wider citizenry. Since all men would vote², it was necessary to appeal to all groups including people with disabilities.

While the workhouses provided temporary and low-quality housing for those temporarily out of work, people with disabilities and mental illness posed a problem for Governments and were expensive to house on a continuous basis. For example, as Richardson (2005) argues

Capitalism therefore sought to remove, control and discipline those who would not or could not conform to new working practices by introducing new secular controls…Between 1720 and 1825, 150 hospitals were built in England to cater for the rising numbers of sick poor (p.71).

These asylums were seen to be placed where the concentration of residents allowed scientific discoveries to be applied more systematically. The seminal work of Seguin and later others on how education could achieve change in the behaviour and abilities of people with disability was revolutionary. While the emergence of modern medicine and psychiatry saw medical staff placed in control of such asylums, Dykens (2006) argues that Seguin’s idea of the training school which through education delivered people with disabilities back to community life was adopted quickly but that,

..over time these schools changed dramatically. With the realization that students were not being cured, schools became less educational, larger and more custodial..institutions became places to keep persons away from a less forgiving and accepting society, (2006, 185).

McClimens and Richardson (2010) posit that up to and during the mid-1900s many people who had disabilities either died when they were young or lived their lives hidden away in institutions or their homes. In the first half of the twentieth century, both the moral and the early medical models were firmly entrenched in western culture and people with disabilities remained segregated from society (Mackelprang & Salsgiver, 1999). ‘Segregation was considered a caring policy in a society which did not care about disabled people…. but World War 1 produced hundreds of thousands of people with disability—who took on the role of the worthy poor’ (British Broadcasting Corporation, 1999, cited in Mackelprang & Salsgiver, 1999, p. 7).

Large institutions situated ‘around the bend’ (and out of sight, the source of this euphemism describing the insane) now operated to cure and to train the lunatics and mental defectives, at least those who did not remain with their families. Bracken and Thomas (2001) argue that in some ways, having been given positions of leadership within the institutions, that psychiatry was borne out of the institutions, rather than the other way around.

The early period in the emergent leadership of the medical profession was also influenced towards the end of the 1800s by Mendel and Darwin in relation to heredity and Binet in relation to intelligence. It may have seemed at the time that the potential of biological science was limitless and that, almost inevitably, the source was individual deficit or pathology. Consequently, the eugenics movement argued that people with disabilities were weakening the national gene pool. Separation of the sexes in the institutions and mass sterilisations followed and continued in some places up to the 1960s (Stubblefield, 2007).

However, the most egregious of the eugenics policies under Nazism saw many hundreds of thousands of people with disabilities gassed in the concentration camps. The repercussions of the Second World War for disability cannot be underestimated. The 1948 Universal Declaration of Human Rights emerged in large part as a response to the experience of Nazism. Not long after, Goffman’s (1961) work on asylums and Barton’s (1959) on institutional neurosis changed public sentiment and pointed to the regimentation, Spartan conditions and cruel treatment experienced in the asylums. While survival rates improved, inmates’ experiences are widely recognised as being extreme and catastrophically damaging. Not surprisingly the latter half of the twentieth century has seen deinstitutionalisation and resettlement in the community under a series of ‘community care’ initiatives hand-in-hand with normalisation theory.

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