Download Disability and chronic illness workshop An AHRC

DISABILITY AND CHRONIC ILLNESS WORKSHOP
AN AHRC-FUNDED WORKSHOP
UWE, Bristol
The Box, St Matthias Campus
Friday 30 January 2009
Constructions and Frameworks; Historical Reflections on the Nature of Disability and
Chronic Illness
Dr Julie Anderson (University of Manchester and Wellcome Trust)
Historically, both chronic illness and disability have been represented in a number of ways. From
invalidism to heroic ‘overcoming’, chronic illness and disability have symbolised the human condition
as it relates to bodily and health difference. The nature of chronic illness and disability has been reconstructed over time as a result of scientific discovery, the application of technology and most
importantly, the changing aspects of societical and cultural understanding. In examining disability
and chronic illness through a number of historical constructions such as class and gender this paper
seeks to understand how disability and chronic illness have been represented and framed over a
period of time. Conditions and diseases have shifted between categories and their effects have been
altered through a complex range of therapies and attitudinal changes and the paper will attempt to
unpick some of these nuances. Some, such as drug therapies and legislative changes are more
evident in a historical timeline, whereas others such as attitudinal change are less obvious. In
addition to these shifts, the paper will seek to make sense of the historical complexity of both bodily
and health difference through the twentieth century.
Capability, Disability and the Medical and Social Models
Gideon Calder (Newport)
The social model of disability has made crucial, invaluable differences, both politically and
theoretically. It has opened up rich resources, and highlighted a range of limitations and exclusions
inherent in the ‘medical’ model which it both critiques, and seeks to overcome. But the social model
also poses niggling questions, arising from the very persuasiveness of its basic case. If we pursue its
implications, we run into quite deep political, ontological and phenomenological issues which – as
this talk will argue – have implications outside of the field of disability theory and practice. This
paper seeks to identify some of those questions, and to consider the extent to which the capabilities
approach (endorsed by Martha Nussbaum and Amartya Sen) might provide a framework through
which they might adequately be thought through. My answer is a qualified ‘yes’. The critique
arising from the social model involves a commitment to some kind of model of enablement – and
some kind of capabilities approach is, I will argue, the best way of doing justice to its insights.
Using Corpora to Investigate Language, Gender and Illness Experience
Prof Jonathan Charteris-Black (UWE)
This paper demonstrates how approaches developed in ‘corpus linguistics’ can be employed to
investigate a range of variables (especially gender) in relation to a large corpus of transcribed
interviews with people who have experienced illness. Corpus analysis allows the analyst to 'see'
things that would otherwise go without comment and to apprehend otherwise hidden phenomena.
The method represents an integration of qualitative and quantitative techniques.
This paper compares two software programmes “Wordsmith Tools” and WMatrix as sources of
insight into the language of people experiencing illness. Wordsmith Tools identifies words that are
used more frequently by one gender when compared with the other, while WMatrix identifies
concepts that are used more frequently by one gender when compared with the other. The findings
for key words may be compared with the findings for key concepts and both may also be used as the
starting point for an interpretive and eventually qualitative analysis.
The body politic: theorizing disability and impairment
Dr Philip Cole (Newport)
The role of the idea of ‘impairment’ in the social model of disability isn’t that clear. In a recent paper
Lorella Terzi made some useful suggestions which I want to consider here. We know that the social
model of disability says that what disables people is nothing to do with their body, and everything to
do with the social context. This is a model that sees disability as social oppression. It’s a highly
political approach, and some of its proponents point out that it is not intended to be a theory of
disability, but more a political tool for action. Terzi’s concern is that the social model over-socializes
disability such that it loses the connection with the physical body, and because disability is
connected with impairment, there must be some connection with the physical body – but what is
that connection? Terzi says there has to be a causal connection … there must be a causal
relationship between impairment and disability. Her second concern is that the social model
replaces departure from the normal with an idea of difference – but impairment is not just
difference, it is a departure from normal human functioning. So it is the idea of impairment, which
remains, say some writers, a more objective and physical notion, that grounds the idea of disability. I
have some concerns with these moves, and some concerns about seeing the notion of impairment
as something objective and physical independent of the socialized idea of disability. What I’m going
to suggest is that the idea of impairment itself needs to be socialized and, indeed, politicized.
Blossoming into ‘Real People’? Framing Schizophrenia as Chronic Illness or Disability in the
Context of Social and Economic Rehabilitation, 1945-1980
Dr Vicky Long (Warwick)
Schizophrenia emerged as a diagnostic label in late nineteenth and early twentieth-century
psychiatric practice which grouped together a number of behavioural and psychological symptoms,
hypothesising that all stemmed from a sole organic disorder. Schizophrenia, as elaborated by these
psychiatrists, was a chronic and degenerative illness which inexorably dehumanised its sufferers.
From the late 1950s onwards, mental health care policy began to focus on rehabilitating and
ultimately resettling hospital patients into the community. Psychiatrists seeking to rehabilitate longstay patients diagnosed with schizophrenia consequently began to explore their capabilities and
aptitudes. John Wing, director of the Social Psychiatry Unit, suggested that many of the problems
experienced by patients diagnosed with schizophrenia and many of the symptoms they displayed
were not natural products of a disease process but resulted from the interaction between individuals
and their social environment. Individuals diagnosed with schizophrenia had secondary social
disabilities, which could be alleviated by manipulating their environment.
Employment was seen as a crucial means to reintegrate patients into social life and thus
psychiatrists began to experiment with methods to prepare patients for their future role of
employee in a workplace environment. Here, mental health care rehabilitation dovetailed with
existing systems of industrial rehabilitation inaugurated by the Ministry of Labour which had been
designed to assist people with physical disabilities seeking to rejoin the workforce. I will argue that
the convergence of these two ideologies of rehabilitation subtly transformed understandings of
schizophrenia into a condition which was perceived as both chronic and disabling. Schemes operated
through the Ministry of Labour measured success in terms of cost and number of individuals placed
in work. Consequently, little attention was paid as to whether employment fulfilled any
psychological function for psychiatric ‘rehabilitees’, who were frequently placed in the types of
monotonous and repetitive work often implicated as a cause of neurosis. Because schizophrenia had
been defined as chronic and disabling, individuals diagnosed with schizophrenia were perceived as
‘difficult’ cases to place and were frequently marginalised by Ministry of Labour officials keen to
bolster ‘success’ rates.
CFS/ME: Can a Phenomenological Approach help?
Dr Andrew McGettigan (Central St Martins, UAL)
This presentation will extend some of the themes in Havi Carel's Illness by considering a particular
condition. Chronic Fatigue Syndrome, or ME (even the name is controversial), is a potentially severe,
chronic condition that has been marked by several controversies in recent years. Its aetiology
(cause) and pathogenesis (disease process) are unknown and there is no general approach to
treatment. It is not clear if it is single, but diverse, clinical entity, or an umbrella term covering a
number of similar syndromes.
Without agreed physical markers, and dependent on exclusionary diagnoses, the recognition of it as
an illness has been the source of debate and controversy, as has the suggestion of psychiatric or
behavioural components. The patient experience has justifiably been opposed to a dimisive
approach from some professionals who inform them that there is no disease or damage underlying
their symptoms - this leads to the implication, or inference, that the problems are 'all in the mind'.
On the other hand, pressure groups advocate lifestyle changes and NHS guidance refers to
'abnormal illness behaviours' and 'somatoform disorders'.
The naturalistic conceptual resources framing the debate can appear limited - reducing the complex
issues to a simplistic division between mental, psycho-social or physical causes. This presentation
will outline how phenomenology, premised on the suspension of the classical mental/physical
division, could contribute to a rethinking of the concepts underlying identification and management
of the condition - particularly in approaches to coping and possible recovery.
‘Sick or disabled?’: A discussion of the interaction between chronic illness and psychoemotional disablism
Dr Donna Reeve (Lancaster)
Working from within a disability studies perspective, this paper uses the extended social relational
definition of disablism (rather than disability) whereby:
‘Disablism is a form of social oppression involving the social imposition of restrictions of
activity on people with impairments and the socially engendered undermining of their
psycho-emotional well-being.’ (Thomas, 2007: 73)
Like the social model of disability traditionally used within disability studies, this definition clearly
recognises disabling barriers which operate at the structural/material level, affecting what people
can do. However, in addition to the more usual public barriers faced by people with impairments,
this definition also explicitly recognises barriers which operate at the psycho-emotional (personal)
level. Thus someone may be prevented from doing something because of a flight of stairs (structural
disablism) or because of the attitudes/stares of others (psycho-emotional disablism).
Disability studies has been criticised for failing to take account of the lived experience of impairment
and in particular, for failing to represent adequately the experiences of people living with chronic
illness. Similarly, there have been criticisms of medical sociology for neglecting the effects of
disablism when discussing the lived experience of people with chronic illness.
In this paper I will discuss some of the issues which arise when considering the potential role of
psycho-emotional disablism in the lives of people with chronic illness. I will draw on the narratives of
two women with MS and a man with RSD who took part in my doctoral research, to show the
complexity of their lived experiences of chronic illness and psycho-emotional disablism.
I show how psycho-emotional disablism is revealed within their accounts of dealing with health
professionals and other people, and how it is exposed by the problematic relationships they have
with themselves (internalised oppression) as they move between different subject positions such as
being disabled, sick or well. In addition psycho-emotional disablism can happen when one is forced
to occupy a particular position by others, for example when applying for disability benefits.
However one cannot simply analyse these examples through the lens of disablism alone – it is also
necessary to take account of impairment and impairment effects as well as other facets of identity.
This is particularly true in the case of chronic illness such as MS with unpredictable ‘good’ and ‘bad’
days; what are the consequences of being ‘disabled’ one day, but ‘able’ the next? I also show how
chronic illness can be exacerbated by the experience of psycho-emotional disablism as well as
impacting on how people can resist this ‘inner’ dimension of oppression.
Importantly, although someone might not see themselves as disabled, as the examples I discuss
show, this does not mean that psycho-emotional disablism will also be absent from the lives of
people with chronic illness.
Therefore, when looking at concepts of chronic illness, it is also necessary to take account of the
concept of psycho-emotional disablism and vice versa – they do not exist in isolation but interact
with each other in a complex manner.
Capturing the personal impact of chronic illness: the example of
rheumatoid arthritis
Tessa Sanderson (UWE/ BRI)
In this paper, I want to explore how the assessment of chronic illnesses such as rheumatoid arthritis
(RA) is still based on a biomedical framework, and how inclusion of personal values and adaptability
to measurements might capture the personal impact of long term conditions (LTC). The
measurement of RA focuses on the disease and impairments caused by the disease, capturing the
dysfunctional biological body. Functional disability is positioned as a key clinical outcome for the
assessment of RA disease activity and as a predictor of future morbidity. However, the key
instrument for measuring functional disability, the Health Assessment Questionnaire (HAQ), includes
items that may be of little importance or irrelevant to some individuals with RA. Thus, it appears
that the functional loss is captured simply in criteria deemed important to clinicians and without
considering the personal impact of that loss.
Access to expensive RA medications, biologic therapies, is determined by the Disease Activity Score
(DAS) in the UK. The DAS is an algorithm of different measurements of disease activity and a high
score (very active disease) is required for eligibility for these therapies, and as such, access is
determined by the biological body. The functional and psychological disability associated with the
disease activity is not captured, nor is the personal importance of that disability or adaptability to it
considered. From the perspective of those living with RA, it appears that the ‘lived experience’ of
the illness is ignored. The mismatch between health professionals valuation of the disease activity
and patients valuation of the impact of their illness, can be very distressing.
A model of well-being in RA, developed from in-depth interviews, suggests that feeling well with a
LTC may not only result from an improvement in symptoms (pain, swelling, stiffness, fatigue) or
impairment, but also through adaptive processes (cognitive and behavioural). This includes
perceptions of normality, including both feeling normal and the ability to have a normal life. The
concept of normality, as described by the interviewees, was linked to the identification (or not) with
their illness, a pre-arthritis self, and social norms. By considering the meaning of illness to the
individual, a ‘lived experience’ of the illness can be captured, even within the context of a clinical
trial. That is, by measuring the importance a person places on the impairment of a function (or
intensity of a symptom), in addition to the level of impairment, a more accurate personal impact
level can be obtained (whether the importance stems from personal values or priorities, or external
circumstances). For example, where two people living with RA cannot get into a bath, the impact
will be greater for the one who does not have access to a walk-in shower or perhaps less for one
who always preferred showering. That is, the level of disability, the importance of the functional
loss, and the individual’s adaptability to that loss should be measured.
In summary, I argue that it is possible to move from the assessment of the biological body (disease
and level of disability) to a more holistic measurement of the ‘lived experience’ of chronic illness
(including the personal impact of disease and disability). This would allow standardised instruments
to be used in clinical trials, while also capturing variation in individual values and adaptability.
Disability History before “Disability”: Conceptualising Impairment and Chronic Illness in Early
Modern England
Dr David M. Turner (Swansea University)
The field of Disability History has been dominated by studies of modern, industrialised societies.
Much work in this field has focussed on the emergence of ‘disability’ as a product of modernity, as
industrialisation placed new emphasis on productivity and the functional capacity of bodies as a
means of establishing norms and as disability became increasingly distinguished from other forms of
bodily anomaly by a clearer medical perspective. Tracing the origins and impact of the economic
disadvantages faced by disabled people, and the ‘medical model’ that reduces impairment to
biological insufficiency, has been a major objective of Disability History, reflecting its origins in the
political activism of the Disability Rights Movement and the related academic field of Disability
Studies.
Important as this work is, it poses problems for historians working on periods before 1800. While
many aspects of disability in the nineteenth and twentieth centuries are becoming clearer thanks to
the wave of ‘new’ disability history, it is still the case that relatively little is known about the
evaluation of impairment and experiences of disabled people in earlier times. In her recent
groundbreaking study of disability in the middle ages, Irina Metzler (2005) has drawn attention to
the problems of applying the terminology and conceptual framework of modern disability studies to
pre-modern societies, and has highlighted the complexity of perceptions of physical impairment in
an age before ‘disability’ was a meaningful concept. Building on the insights of this work, this paper
attempts to rethink some of our understandings of impairment in early modern England. Beginning
with a review of the ways in which historians have approached disability in the pre-industrial period,
it goes on to discuss various ways in which impairment was conceptualised in early modern England.
Focussing in particular on the language used to describe physical impairment it highlights the
overlapping ways in which disability and chronic illness were described and evaluated in the
seventeenth and eighteenth centuries. It also highlights how a variety of sources beyond the
traditional canon of medical history, such as criminal court records, popular pamphlets and
auto/biographical materials might be used to examine how ordinary people conceptualised their
own and other people’s illnesses and impairments. Although the languages of impairment and
chronic illness were often opaque, making retrospective diagnosis of particular pathologies of
‘conditions’ difficult, early modern men and women might be articulate in describing the effects of
disabling conditions such as lameness on their daily routine and in explaining differences between
long term and more temporary problems. It also suggests some of the ways in which early modern
people might view their impairments in flexible ways and adopt different subject positions according
to circumstances and context. The paper concludes by reflecting on the implications of its findings
for the broader project of reassessing disability historically.