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Contents
The Disability Press
ii
Acknowledgements
iii
Contributors
iv
Abbreviations
v
1
Introduction: Emerging Insights and Perspectives within
Disability Studies
Laura Hemingway
1
2
Further Towards an Affirmation Model
Colin Cameron
12
3
A Case for the Sociology of Impairment
Thomas Campbell
27
4
Coming Out Softly: An Exploration of ‘Erectile Dysfunction’
from Augustine to Scorsese
Paul Dawson
41
In Search of a Flexible Model of Disability: Germany and the
Disability Rights Movement
Pauline Eyre
52
5
6
Early and Current Approaches to Disability in Portugal: a Brief
Overview
65
Fernando Fontes
7
The Suffering Body in the Cultural Representations of Disability:
The Anguish of Corporal Transgression
78
Bruno Martins
8
The Significance of Studying Disabled International Students’
Experiences in English Universities
Armineh Soorenian
9
Male Anorexia Nervosa: Risk, Subjectivity and Disability
Chris Till
Index
90
105
118
The Disability Press
The Disability Press aims to provide an alternative outlet for work in the field of
‘disability studies’. It draws inspiration from the work of all those countless disabled
individuals and their allies who have, over the years, struggled to place ‘disability’ on
to the political agenda. The establishment of The Disability Press is a testament to the
growing recognition of ‘disability’ as an equal opportunities and human rights issue
within the social sciences and more widely in society.
The Centre for Disability Studies at the University of Leeds has provided funding for
this volume. We also wish to record our thanks to the School of Sociology and Social
Policy at the University of Leeds for its continuing support.
Colin Barnes and Geof Mercer
Acknowledgements
This book grew out of the ‘Centre for Disability Studies Postgraduate Research
Student Conference’ held at the University of Leeds, 12th May 2007. This book
would not have been possible to complete without the funding and support of the
Centre for Disability Studies. We would also like to thank Colin Barnes in particular
for his support and advice during the writing and editing of this book.
We would like to thank all of those who participated in or attended the conference,
and hence made this book possible. The presenters included: Ruth Bailey, Elizabeth
Brace, Colin Cameron, Thomas Campbell, Paul Dawson, Alice Elliott, Pauline Eyre,
Fernando Fontes, Andrea Hollomotz, Nina Marshall, Bruno Martins, Jon Minton,
Julie-Ann Pencle, Armineh Soorenian, Pedro Teixeira, Chris Till and Emma Wright.
The chairs and organisers were: Thomas Campbell, Fernando Fontes, Laura
Hemingway, Andrea Hollomotz, Beatriz Miranda, Julie-Ann Pencle, Armineh
Soorenian and Chris Till.
We would also like thank everybody who submitted papers to the book and all the
contributors.
Contributors
Colin Cameron is a PhD candidate and lecturer in the School of Media,
Communication and Sociology at Queen Margaret University, Edinburgh.
Thomas Campbell is a PhD candidate at the Centre for Disability Studies, School of
Sociology and Social Policy, University of Leeds.
Paul Dawson is a PhD candidate at the Department of Oral Health and Development,
School of Clinical Dentistry, Sheffield University.
Pauline Eyre is a PhD candidate at the School of Languages, Linguistics and Culture
at the University of Manchester
Fernando Fontes is a PhD candidate at the Centre for Disability Studies, School of
Sociology and Social Policy, University of Leeds.
Laura Hemingway is a PhD candidate and Research Assistant at the Centre for
Disability Studies, School of Sociology and Social Policy, University of Leeds.
Bruno Martins is a PhD candidate at the Faculdade de Economia da Universidade de
Coimbra [Faculty of Economics of the University of Coimbra] – Portugal.
Armineh Soorenian is a PhD candidate at the Centre for Disability Studies, School
of Sociology and Social Policy, University of Leeds.
Chris Till is a PhD candidate at the Centre for Disability Studies, School of
Sociology and Social Policy, University of Leeds.
DH
Abbreviations
ACAPO
Portuguese National Association of the Blind
AN
Anorexia Nervosa
ASL
American Sign Language
BBC
British Broadcasting Corporation
BCODP
British Council of Disabled People
CDS
Centre for Disability Studies
CIS
Council of International Students
DDA
Disability Discrimination Act
DED
Disability Equality Duty
DRC
Disability Rights Commission
DPI
Disabled People’s International
DSA
Disabled Students’ Allowance
DSM
Diagnostic and Statistical Manual
EHEA
European Higher Education Authority
FE
Further Education
FSA
Food Standard Agency
GDAs
Guideline Daily Amounts
HE
Higher Education
HEFCE
HESA
HMSO
Higher Education Funding Councils for England
Higher Education Statistical Agency
Her Majesty’s Stationery Office
International Classification of Impairments, Disabilities and Handicaps
IGD
NS
NUS
Institute of Grocery Distribution
National Socialist
National Union of Students
OU
Open University
PA
Personal Assistance
QAA
Quality Assurance Agency
SENDA
Special Educational Needs and Disability Act
SWD
Students with Disabilities
UK
United Kingdom
UPIAS
Union of Physically Impaired Against Segregation
UN
United Nations
UCAS
Universities and Colleges Administration Service
UKCOSA
United Kingdom Council for International Students Affairs
CHAPTER 1
Introduction: Emerging Insights and Perspectives within Disability
Studies
Laura Hemingway
Introduction
Although data are dependent upon the definitions used, it is suggested by the Prime
Minister’s Strategy Unit (PMSU) (2005: 27) that there are “…11 million disabled adults
and 770,000 children in the UK, equivalent to 24% of the population and 7% of all
children”. Despite representing such a large proportion of the population, disabled
people experience disadvantage in all aspects of their everyday lives. In more recent
decades, this disadvantage has come to be challenged by the disabled people’s
movement, which has drawn attention to the ways in which social, economic and cultural
factors restrict opportunities (rather than focusing on individual impairment as the cause
of exclusion). This challenge has been paralleled by the emergence of Disability Studies
as an academic discipline. The Centre for Disability Studies (CDS) at the University of
Leeds has been at the forefront of these developments, promoting the work of both
established academics and up-and-coming researchers within Disability Studies. It is the
insights and perspectives of this latter group (including both UK-based and international
researchers) which form the focus of this edited collection, with the aim of showcasing
some of the research currently taking place within the field. In order to provide a
backdrop to some of these emerging perspectives, this chapter offers a brief overview of
some of the key developments in the discipline, before looking at the establishment and
role of the CDS in this process, and the formation of the Disability Press. This is
followed by an explanation of the recent CDS-run postgraduate research
conference that made this edited collection possible. Finally, the chapter provides an
overview of the contributions included within this publication.
Developments within Disability Studies
Interest in disability issues within the academic sphere is not new, having been a concern
of medical, health and rehabilitation studies for decades. It is developments within the
sociological realm, however, which have been considered the most significant (Barnes et
al., 2002) and which predominantly form the basis for this discussion. The sociological
analysis of disability has emerged through sociological issues relating to social control
(Parsons, 1951), socially constructed deviance (Goffman, 1968; Foucault, 1965; 1973)
and medical concerns (Zola, 1973; 1977; Gerhardt, 1989). In addition, pioneers of the
sociological understanding of disability have included writers such as Peter Townsend
(1979), with his work on poverty, and David Thomas (1982), a mainstream academic
who produced a truly sociological understanding of the experience of disability.
Disability Studies in its current context has its roots in events occurring in the late
1960s and 1970s. The first signs of challenge to the prevailing discourse of disability
occurred in 1966, with the edited collection presented by Paul Hunt entitled Stigma: The
Experience of Disability. During the 1970s, alongside the increasing politicisation of
disabled people and emerging accounts put forward by disabled people about their own
lives (in the UK and the US), the Open University (OU) launched the first course to deal
solely with disability issues, called The Handicapped Person in the Community (Brechin
and Liddiard, 1981). Although disabled people were not involved in its initial production
beyond some level of consultation, later contributions from disabled people led to its
development and re-write in the 1980s, and finally to its re-naming at the end of the
1980s as The Disabling Society (Finkelstein, 1997). The OU also produced two
important edited texts during this time, with key contributions from disabled people
(Brechin and Liddiard, 1981; Brechin et al., 1981). These advances were further
supported by the establishment of a dedicated academic journal in 1986, previously
known as Disability, Handicap and Society, now titled Disability and Society. This
journal provided one of the first platforms for academic debate around disability
(committed to the social model of disability) (Barton and Oliver, 1997), and offered an
outlet for new findings and insights devoted exclusively to disability issues.
Furthermore, in the Editorial for the first issue of the first volume of Disability, Handicap
and Society, the stated intention of this new journal was
ultimately to provide an additional “…means of developing understanding and
contributing to the struggle for democratisation and the realisation of significant change”
(Disability, Handicap and Society Executive Editors, 1986: 4). Following these
developments in the UK, there has been further progress on an international scale, with
important contributions from key writers such as Lennard Davis (1997a) in the edited
collection The Disability Studies Reader, as well as the introduction of journals such as
the Review of Disability Studies.
Of great significance to these developments have been the key transitions in
understandings of disability. The dominant conception within much of the work
produced prior to the 1970s was that social and economic disadvantage could be
attributed to individual impairment factors (Barnes et al., 2002), representing a limited
understanding of disability bounded in concepts of ‘care’ and ‘cure’, and notions of
‘normality’ (Finkelstein, 1997). These ideas, apparently based on ‘professional’ and
‘expert’ knowledge, dominated Disability Studies. What marks Disability Studies out
today from this previous work is a critique of ‘traditional’ assumptions about disability,
which have been framed around a medical interpretation of disadvantage (Titchkosky,
2000). Thus, there has been a shift in interpretations of disability, from what is often
referred to as the individual or ‘medical’ model of disability, or ‘personal tragedy theory’
(Oliver, 1986), to a more social understanding of disability. A brief outline of these
models is provided below.
The ‘medical’ model is based on the premise that an individual has an impairment
or ‘functional limitation’ which prevents them from full participation in society, and is
ultimately regarded as the cause of disability (Oliver, 1990a; 1996). The remedy is
sought in the ‘rehabilitation’ or ‘cure’ of the individual. This arguably constitutes a
deficient basis for understanding disability and impairment, not merely for focusing
almost entirely upon the impairment, but for also failing to acknowledge disabling forces
inherent in the cultural and physical environment (Oliver, 1990b; Barnes et al., 1999;
Swain et al., 2003). An alternative, social interpretation of disability began to emerge
during the 1970s, with the Union of the Physically Impaired Against Segregation
(UPIAS) (1976) redefining disability as that which is socially created; a result of social,
environmental and attitudinal barriers experienced by the individual. Two distinct terms
therefore emerged: ‘impairment’ which is the biological, functional attribute or condition
of the individual, and ‘disability’ which is the experience of social disadvantage. The
social model was established further
during the 1980s and 1990s (Finkelstein, 1980; Oliver, 1983; 1990b) and
importantly, it was disabled people themselves who were central to these developments.
Whilst the social model/approach/understanding to disability is largely accepted
within Disability Studies, it has not been without criticism, and debate continues to
surround issues related to the role of impairment or other social divisions (such as age,
ethnicity, gender and sexuality), as well as the supposed neglect of people in particular
impairment groups such as people labelled with learning difficulties or mental health
service users (see Morris, 1991; Bury, 1996; Crow, 1996; Corker and French, 1999;
Thomas, 1999; Shakespeare and Watson, 2002; Shakespeare, 2006). Furthermore, efforts
to develop or expand the social model have also been witnessed, in the form of the
relational model and ‘impairment effects’ (Thomas, 1999; 2004), and the affirmation
approach (Swain and French, 2000) (the latter of which is explored further in this
collection by Colin Cameron, see Chapter Two).
It is only more recently - in the last twenty years - that Disability Studies has
emerged as distinct from other social science disciplines; as one that is involved in
political struggle (Davis, 1997b) and driven by a social understanding of disability
(Barnes, 2004). Furthermore, it was not until the 1990s that UK universities adopted the
social approach to disability within their Disability Studies teaching, continuing instead
to focus on an individual or ‘medical’ interpretation of disability (Ibid.). The discipline
of Disability Studies now encompasses researchers from a wide range of backgrounds
and traditions. Within these it is possible to identify those working within materialist
analyses (Finkelstein, 1980; Oliver, 1990b; 1992; 1996; Barnes, 1991; Gleeson, 1997);
feminist perspectives (Morris, 1991; 1993; Corker, 1996; Sheldon, 1999; Thomas, 1999)
and postmodernist approaches (Shakespeare and Watson, 2002; Shakespeare, 2006), to
name a few. Furthermore, issues highlighted by disability studies have gradually begun
to inform other disciplines, including literary studies (Davis, 1995; Thomson, 1997);
geography (Gleeson, 1999; Imrie, 2003; 2004); history (Borsay, 2005) and psychology
(Goodley and Lawthom, 2005). Such varieties in approach and perspective have led to
considerable debate and important developments within Disability Studies.
The Centre for Disability Studies
The Centre for Disability Studies (CDS) developed from the former British Council of
Disabled People’s (BCODP) Disability Research Unit,
established by Professor Colin Barnes in 1992, to become an internationally renowned
centre for both research and education within disability studies (CDS, 2008a). Located at
the University of Leeds, and working from a social model of disability perspective, the
CDS introduced an array of undergraduate, postgraduate and electronically-based
Disability Studies courses (opening up opportunities for education to a wider audience).
At the same time, it has expanded its contacts, networks and partnerships of disabled
people, including members from a variety of backgrounds. The CDS has collaborated
with various national and international organisations of and for disabled people. It also
has links with local and national user-led organisations, agencies and academic
institutions. A key aim of the CDS has been to promote appropriate research practice and
the dissemination of findings for disabled people, within the framework of the social
model of disability. This has involved a focus upon ‘emancipatory’ research (Oliver,
1992; Stone and Priestley, 1996; Beazley et al., 1997; Moore et al., 1998; Mercer, 2002;
Barnes and Mercer, 2004) and the launch of a range of channels for knowledge transfer.
In addition to hosting a range of meetings, seminars, presentations and conferences, the
CDS distributes disability-related findings via an Internet-based disability discussion
forum (with a range of national and international members); the Disability Archive UK (a
freely available online resource providing access to various texts, papers and other
sources) and the Disability Press (an independent publishing house).
Run by CDS, the Disability Press is a dedicated Disability Studies publisher,
providing an alternative, not-for-profit channel for researchers working within the
discipline. It has also been a platform for many of today’s established figures in the
disability field. Thus far, the Disability Press has published nine edited collections and
two reports (see CDS, 2008b), which have aimed to stimulate debate and promote the
range of perspectives held within Disability Studies, with both national and international
focuses. This book is the first publication by the publisher to have been collated entirely
by postgraduate researchers, with the prime intention of representing emerging ideas and
research interests within the field.
The impetus for this book stemmed from a conference that took place on 12th May
2007 at the University of Leeds. Run by CDS postgraduates and primarily held for new
researchers within the field of Disability Studies, the aim was to provide an outlet for
students to network, engage with current disability debates, and present findings
(sometimes for the first
time) within a supportive academic environment. What became apparent was the
diverse and valuable nature of some of these original contributions for Disability Studies.
Topics covered by the speakers included experiences, barriers or policies evident within
the areas of employment, health care and higher education; histories and analyses of
international disability policies (within Portugal, Jamaica, Germany and the United
States), and issues emerging in relation to sexuality and people with learning difficulties,
to name a few. Following the conference, the speakers were invited to submit their
papers as chapters for the current collection. A selection of those submitted are presented
here to provide an illustration of some of the different views and interests that emerged
on the day.
Contributions and Layout of this Collection
The chapters showcased here present a range of independent and distinct perspectives
intended to stimulate further debate within Disability Studies. The contributions are
diverse in terms of their content, and the researchers who present them (with both
disabled and non-disabled researchers, those based within and outside the UK, and at
different stages in their research careers). As such, it has been considered necessary to
place the chapters in alphabetical order by surname, rather than attempting to construct a
logical sequence or some form of categorisation for the reader.
The collection of contributions begins with a piece by Colin Cameron, who
considers some of the existing divisions within Disability Studies, as mentioned earlier,
in relation to the social model of disability. The affirmation model is a relatively recent
development of the social model which asserts that whilst disabled people may
experience disadvantage linked to their impairment, many people with appropriate
support reinforce a positive, affirmative identity. This approach, first proposed by John
Swain and Sally French in 2000, is explored in detail by Cameron. Here, he asserts the
usefulness of the affirmative model, drawing on cultural examples to support his claims.
Whilst he largely supports the basis of the affirmative model, he proposes the addition of
key definitions which he believes will assist in strengthening the utility of this important
theoretical development.
In Chapter Three, Thomas Campbell follows a similar theme - proposing an
elaboration of the social model in order to enhance existing knowledge - only this time
the focus is on the contribution to be made by a sociology of impairment. The
importance of the development of a sociology of impairment, or of the body, has been
discussed in the past,
most notably by Bill Hughes (2002), but Campbell takes this argument forward in
Chapter Three, proposing an historical approach to the emergence of impairment
categories. The chapter draws on the work of Hughes, Paterson and Oliver, to argue that
disablement can only be properly understood once a sociological understanding of
impairment has been developed. For Campbell, however, the study of disabled people’s
experiences of impairment has had a tendency to individualise disablement and therefore
takes a step backwards from the important achievements of the social model. He
proposes instead that the study of impairment should be focused on how particular
impairment categories emerge, change, and in some cases, disappear. His research is
therefore primarily concerned with how particular impairments become problematised
due to changing socio-economic, political and scientific conditions. Campbell concludes
by suggesting that through the historical study of these processes, a sociology of
impairment can be developed, which will enrich the sociology of disablement.
In Chapter Four, Paul Dawson reports on the notion of ‘perfect sex’ and
compulsory sexuality within the context of psychogenic ‘erectile dysfunction’. Drawing
on various cultural artefacts, in particular, the theological work of Saint Augustine of
Hippo’s The City of God and the Martin Scorsese film The Departed, Dawson highlights
the manner in which the stigma of erectile dysfunction is infiltrated by the notion of
compulsory sexuality. The idea of ‘perfect sex’ is illustrated by an exploration of
Augustine and the ‘Rampant Rabbit’ vibrator, which he argues represents a cultural
continuity. He concludes the chapter by suggesting that the notion of compulsory
sexuality and perfection of sex does, and could in the future, lead to a heightened
‘Othering’ of men ascribed with ‘erectile dysfunction’. The underlying theme of the
chapter is one that presents the possibility that compulsory sexuality constitutes a
component of disability.
An explanation of the development of perceptions of disabled people within
Germany, drawing distinctions with the British situation, has been provided by Pauline
Eyre in Chapter Five. She argues that in order to further understand German theories of
disability it is essential that they are positioned within Germany’s historical context, with
particular reference to the legacy of the Third Reich, and the regime’s goal of the
eradication of disabled people. Eyre presents a detailed overview of the development of
Disability Studies within Germany. Her essential argument is that attitudes to disability
have remained obscured by a ‘squeamishness’ about
drawing attention to the issue of disability at all, to the extent that Germany has
failed to take up a social model of disability, and is only now exploring an alternative to
the ‘medical’ model.
In Chapter Six, Fernando Fontes offers an analysis of changing conceptions of
disability and of disabled people in Portugal. He investigates the values attached to
disability, highlighting its social and political implications in shaping current public
opinion and disability policies. Fontes begins by drawing attention to claims that
‘disability’ and ‘disabled people’ as specific categories emerged in Portugal in the
nineteenth century. Nonetheless, he identifies a tendency for the categorisation of
disabled people from early fifteenth century onwards, which corresponds to an increasing
involvement of the State in the provision of social and economic support to the
Portuguese population. The chapter then looks at how this categorisation process, which
implied the construction of new ideas and meanings attached to disability, impacts on
current perspectives of disability.
Bruno Martins discusses the experience of impairment in Chapter Seven,
particularly in relation to the effect that the acquisition of an impairment can have on the
personal histories of the individual. Drawing on the phenomenological tradition, and
using empirical findings from his research into the experiences of ‘blind people’ in
Portugal, Martins looks at both cultural constructions of attitudes towards ‘blind people’,
and how these relate to actual experience. Through this analysis the interplay between
embodied experience, cultural representations and socio-political transformation is called
to the fore.
In the penultimate chapter, Armineh Soorenian draws attention to disabled
international students’ experiences of English universities; experiences which she argues
have been long neglected, especially considering the increasing number of disabled
international students studying in the British higher education system. A disabled
international student herself, Soorenian argues that her personal experiences have been
central to her decision to explore the barriers faced by other disabled international
students. The chapter, drawing on insights and informant responses from Soorenian’s
current research, demonstrates the range of constraints that disabled international students
encounter and emphasises the significance of documenting disabled international
students’ accounts, in order to improve understandings of these barriers. The chapter
poses questions about possible solutions to making UK universities more inclusive for all
students, as well as highlighting the benefits that the
establishment of a dedicated support service could provide for disabled
international students.
In the final chapter, Chris Till argues for the necessity of a new theoretical
approach to Anorexia Nervosa (AN), as a consequence of existing theories’ apparent
inadequacies for application to male AN. Till draws attention, however, to some of the
more recent theoretical developments which have taken some steps towards allowing for
a sociology of male AN by attempting to overcome the disembodiment of, and the
primacy of, sexual difference in theories of AN. Combining Bill Hughes’ call for an
embodied notion of impairment with an analysis of AN, Till fundamentally problematises
the psychological model of AN, with a view to developing a thoroughly sociological
analysis of how it is perceived. It is suggested that an approach influenced by the
sociology of knowledge, and Foucauldian analysis, will enable theorising that is not
dependent on sexual difference and does not reify separations between mind and body, or
individual and society, by shifting the focus onto knowledge.
Conclusion
This chapter has provided a brief history of the development of Disability Studies, with a
view to creating a backdrop for the contributions within this collection. The important
role played by the Centre for Disability Studies, and the various outlets that it has
provided for both established and emerging Disability Studies researchers, has been
highlighted. This has involved a particular focus on the conference that led to this
collection, and the Disability Press which provided the opportunity to present key
elements of ongoing research projects from some of the ‘newcomers’ to the Disability
Studies field. The contributions described here have offered theoretical possibilities and
empirical insights into a range of issues, illustrating the perceived continued importance
of the social model of disability (albeit with recommendations for further developments);
a sustained recognition of the important role that histories of disability, and
understandings about experiences of impairment, can play; and the importance of policy
developments to engage with some of the inherent social barriers that disabled people
encounter. Whilst these insights are only a selection of the numerous ongoing projects
currently emerging within the fast-growing discipline of Disability Studies, this book
hopes to provide an introduction to some of the interests and perspectives arising out of
this exciting field of study.
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CHAPTER 2
Further Towards an Affirmation Model
Colin Cameron
Introduction
In describing the social model of disability as “a hammer for justice and freedom”
Michael Oliver (2004) draws attention to its nature as “a practical tool, not a theory, an
idea or a concept” (pp.11-12). The social model is, it is contended, a practical tool to be
used in identifying and addressing the disabling barriers that prevent people with
impairments from participating equally within mainstream society. Any builder or DIY
enthusiast will recognise, however, that in order to carry out a variety of jobs it is useful
to have more than one tool. If I want to knock a wall down or bang a nail into a wall, I
will use a hammer of one type or another. If the screw holding the arm of my glasses to
the lenses falls out I will look for a little screwdriver. While it would be an option to try
and bang the screw back in with a hammer, this would be to use more force than
appropriate. The fact that I have chosen to use a little screwdriver in this instance does
not imply criticism of the hammer. The hammer is a bigger tool and can do bigger jobs.
But the screwdriver has been designed to do better something the hammer was not made
for. In considering here the affirmative model of disability, first proposed in 2000 by
John Swain and Sally French, I suggest that this model exists in relation to the social
model as the little screwdriver relates to the hammer. It is another practical tool designed
to do another useful job.
I begin this chapter by considering some of the divisions among Disability Studies
academics between critics of the social model (focussing upon feminist concerns) and
those I refer to straightforwardly as ‘social modellists’ (Oliver, 2004: 8-9). I then discuss
the affirmative model as an
intervention in this argument, drawing attention to what I consider ambiguities that
weaken what is otherwise an important theoretical development. I conclude by proposing
affirmative definitions that I hope will strengthen this model as a tool for analysis of the
lived experience of impairment in a disabling society.
Conflicting Voices
Criticism and scrutiny of the social model is not new, and has been an activity of writers
in Disability Studies almost since the term was first used by Oliver in 1983 as a
description of the principles established by the Union of the Physically Impaired Against
Segregation (UPIAS) (UPIAS 1976; Barnes, 2004). Oliver (2004: 8-9) identifies five
main criticisms of the social model that have been made within the discipline: that the
social model ignores or is unable to deal adequately with the realities of impairment; that
it ignores our subjective experiences of the ‘pains’ of both impairment and disability; that
it is unable to incorporate other social divisions, such as ethnicity, age, gender, sexuality;
that it cannot be used in order to describe the way that disabled people are socially
positioned as ‘other’; and that it is inadequate as a social theory of disability. Feminist
writers have stated that the social model over-emphasises socio-structural barriers and
ignores personal and experiential aspects of disability (Reeve, 2004). Jenny Morris
(1991: 10), for instance, has suggested that “there is a tendency within the social model to
deny the experiences of our own bodies”. Liz Crow (1996) has argued for a renewed
social model that would allow for a more complete understanding of disability and
impairment as social constructs and would recognise an individual’s experiences of their
body over time and in different circumstances. Carol Thomas (1999: 42) has developed a
social-relational definition of disability to account for the “socially engendered
undermining of the psycho-emotional well-being of disabled people”. Tom Shakespeare
(2006), drawing upon feminist theory, contends that the social model provided disabled
activists with a framework through which they “could deny that impairment was relevant
to their problem” (p.33).
The response to these criticisms made by social modellists has been that:
the social model is nothing more or less than a tool with which to focus on those
forces, structural and social... that shape our understanding and responses to people
with designated impairments (Barnes, 2007: unpaged).
The social model is not an all-encapsulating theory of disability (Oliver,
1996: 30). It is simply a distinction which offers a different explanation of the meaning
of disability to the dominant (individual model) sense in which this term is usually
thought of, and put into practice, in everyday life.
The individual or medical model, encapsulated by the World Health Organisation
(WHO) in 1980 in its International Classification of Impairments, Disabilities and
Handicaps (ICIDH) identifies disability as:
any restriction or lack (resulting from impairment) of ability to perform an action in
the manner or within the range considered normal for a human being (WHO, 1980:
28).
Thus, disability is recognised as an individual limitation caused by the bodily
imperfections and abnormalities of people with impairments. Appropriate social
responses to the ‘problem’ of disability thus conceived are identified in terms of care and
cure of the individual (Edwards, 2005: 15). The social model, on the other hand,
identifies disability as:
the disadvantage or restriction of activity caused by a contemporary social
organisation which takes no or little account of people who have physical
impairments and thus excludes them from participation in the mainstream of social
activities (Barnes, Mercer and Shakespeare, 1999: 28).
The social model is, then, a description that demonstrably does not exclude impairment.
Following from the above, disability is defined as “a form of disadvantage which is
imposed on top of our impairments” (UPIAS, 1976 cited in Oliver, 1996: 22). Without
impairment there is no social model of disability. While disability is not the only
collective social response that could be made to impairment (the major thrust of the
disabled people’s movement has been to demonstrate this), without impairment as a
departure from and challenge to socially valued norms of physical embodiment in
bourgeois capitalist or modern society, disability as a specific form of social oppression
would not exist. The fact that much research and campaigning activity within the
disabled people’s movement has focussed on structural and environmental barriers
reflects (perhaps controversial) positioning decisions rather than a weakness of the social
model itself.
The Affirmative Model and the Personal Tragedy Model
One intervention within the structural/individual, barriers/experience debate was made by
Swain and French in a Disability and Society article in 2000 entitled ‘Towards an
Affirmation Model of Disability’. Here an
affirmative model is proposed:
essentially a non-tragic view of disability and impairment which encompasses
positive social identities, both individual and collective, for disabled people
grounded in the benefits of lifestyle of being impaired and disabled (Swain and
French, 2000: 569).
Rooted within perspectives emerging from the collective voices of disabled people,
particularly through the disability arts movement, and aiming to build upon “the
liberatory imperative of the social model” (Swain and French, 2000: 569), the affirmative
model is identified as a critique of the dominant personal tragedy model corresponding to
the social model as a critique of the medical model. In terms of levels of experience –
through which the structural shapes the cultural and the cultural shapes the personal
(Thompson, 1998: 17) – the personal tragedy model is the cultural expression of the
medical model and is materialised through the endless circulation of stereotypes
reinforcing the disciplinary messages that conformity is good, aberration is bad; that
‘able-bodiedness’ is valued, impairment and disability are shameful.
It is unsurprising to discover one-dimensional representations of disabled people
abounding in nineteenth century classic fiction. Here we find poor, pathetic victims
(Dickens’ [2003] Tiny Tim); plucky, tragic but brave strugglers against adversity (Joanna
Spyri’s [1995] Clara); and sinister and exotic freaks (Stevenson’s [1994] Blind Pew).
These writings tell us that disabled people can be pitied, marvelled at, or feared, but never
just accepted for who they are (Keith, 2001). What is more disturbing is to discover how
little distance has been travelled and how these same stereotypes continue to circulate in
mainstream culture in the twenty-first century. These are the cultural resources upon
which people with impairments are expected to draw in order to construct personal and
social identities (Cameron, 2007). One need only turn to the pages of any recent issue of
the Dandy comic to discover ‘Blinky’:
This lovable, but dim boy is very confused, to say the least. With him
around, simple tasks like posting a letter or making a cup of tea can result
in widespread chaos and disaster (usually for other people). Debate rages over the
cause of Blinky’s unusual behaviour. Some say he does so many stupid things
because he is short-sighted. This has yet to be proven as he’s never seen an
optician. The opticians have seen him, he’s just never seen them’ (Thompson,
2006, unpaged).
In his autobiography BBC journalist Andrew Collins (2003: 67)
informs us that disabled people are strange and frightening:
Mrs Munro had a mentally and physically handicapped son called Steven whom she
occasionally brought into school just to scare the life out of me.
Ubiquitous charity advertisements continue to present disabled people as tragic victims,
dependent on others for charity:
Are YOU in despair trying to find holiday accommodation suitable for US who are
unfortunate enough to suffer from a disability?’ (Disabled Holiday Directory, 2007:
unpaged).
Capability Scotland is always on the look-out for any new commercial premises in
which to display one of our purple bear collection cans...With your help Capability
Scotland can make positive changes to the lives of disabled children and adults
(Capability Scotland, 2007a: unpaged).
Caravanning for the Disabled (2007: unpaged) ‘inspire’ with the message that:
a disability need not prevent someone from enjoying the many pleasures
caravanning can bring. In fact, for many, horizons have been broadened and their
lives enriched thanks to a determination not be beaten…They also realise more
clearly how limited their lives would be without the stimulus touring and travel
provide.
Attractions at the launch party of the Student Recommended Card (a discount card for
use in a range of public houses) in Edinburgh included fire eaters, pole dancers and
singing dwarves (Student Recommended Card, 2006).
As Jane Kroger (2000: 20) notes, people:
are largely ascribed identities according to the manner of their embedding within a
discourse – in their own, or in the discourse of others.
Participation as a disabled person within a culture in which narratives around
impairment are overwhelmingly negative can be a demoralising experience. Texts
representing impairment as misfortune are often the only available sources of information
about what is possible and likely for disabled people in terms of life experience. The
results for many disabled people are not infrequent interactions such as described by
Janet Read (2000: 33):
when a stranger or someone only slightly known made an approach in public that
was not actively intended to be hostile
but was often experienced…as inappropriate or undermining. It was not unusual
…to get a strong whiff of charity in these encounters…Sometimes it also seemed
that being disabled automatically made you public property and gave you a public
persona that was not always welcome.
Little wonder that rejection of disability identity and an avoidance of personal association
with anything or anyone to do with disability is common:
If I saw anyone who was disabled I didn’t want to talk to them, and if I did talk to
them it was as if I was able-bodied talking to them, doing the old patronising bit
(Shakespeare et al., 1996: 51).
I don’t think I considered myself as anything other than normal...My perception of
disability was framed in terms of those people you see on Blue Peter (Swain and
Cameron, 1999: 72).
[I’m] a normal person. The only difference is I’m in a wheelchair, and I try not to
think of that as a difference (Watson, 2002: 514).
Disabled people find themselves faced with choices involving either an acceptance of
devalued status as disabled; or a rejection of self, an unwillingness to identify or be
identified as disabled, regarding impairment as something to be despised and triumphed
over, not to be referred to or drawn attention to, certainly not to be made the foundation
for a positive identity.
In seeking to address the personal tragedy model, and in order to explain the need
for an affirmative model, Swain and French (2000) draw upon both the feminist and
social modellist positions described above. By disassociating impairment from disability,
they argue, the social model leaves open:
the possibility that even in an ideal world of full civil rights and participative
citizenship for disabled people, an impairment could be seen to be a personal
tragedy (Swain and French, 2000: 571).
The rejection of a tragic view and establishment of an affirmative model is, it is argued,
not a concern of the social model. The feminist position “of admitting that there may be
a negative side to impairment” (Swain and French, 2000: 571) is also regarded as
problematic. In a recent interview on the affirmative model Swain observed that when
challenges are made to the social model on the grounds that it ignores impairment, this is
always from the perspective that impairment is something awful, characterised by pain
and chronic illness (Cameron, 2006). In arguing for an extension of the social model in
order to include the personal, feminists are not making
a claim for the recognition of the rights of disabled people to enjoy being or to be positive
about being who they are. This is not to deny that there can be negative experiences
resulting from impairment, but to suggest that this is not necessarily all that impairment is
about.
Problems with the Affirmative Model
Insofar as the affirmative model - drawing upon the writings and experiences of disabled
people - asserts that, far from being tragic, being impaired can be valuable, exciting,
interesting and intrinsically satisfying, this is a welcome theoretical development. The
argument being put forward by Swain and French (2000: 574) becomes problematic,
however, when the suggestion is made that there are benefits to being disabled.
We interviewed Martha, a Malaysian woman with a visual impairment. She was
separated from a poor and neglectful family and sent to a special school at the age
of five…and subsequently went to university and qualified as a teacher.
If what is being argued is that there are sometimes benefits to segregated ‘special’
education, then this is ground that ‘special’ educationalists and a whole range of
disability industry professionals would give assent to. Working recently in Glasgow as a
trainer for Disability Equality in Education, many of the head teachers with whom I
talked said that while they accept now that inclusion within mainstream schools is
appropriate for many children with impairments, ‘there will always be a need for special
schools for some of them’. Any argument from within Disability Studies suggesting that
‘special’ provision can sometimes be the right option seems to be on dangerous territory.
The same argument could be made to justify segregated activity in other spheres. It
might be suggested that people benefit from being disabled because they get to spend
their time in day centres doing jigsaws, which is an enjoyable experience; or that it’s
good to be disabled and excluded from work, because work is very often boring. There is
a contradiction in saying that the affirmative model builds upon the social model
(disability is oppression) and then saying ‘but sometimes the effects of being disabled are
good’.
Dostoyevsky (1948), a disabled writer recounting his experiences of a nineteenth
century Siberian labour camp, characterised the human being as “a creature that can get
accustomed to anything” (p.8). Disabled people learn resilience, but making the most of
a bad situation is not the same as having the established rights and opportunities to decide
that this is the lifestyle one wants, or being able to make the same choices anyway in the
first place. Sian Vasey (1992) is quoted as saying:
We are not usually snapped up in the flower of our youth for our domestic and
child-rearing skills, or for or decorative value, so we do not have to spend years
disentangling ourselves from wearisome relationships as is the case with many nondisabled women (cited in Swain and French, 2000: 575)
It is one thing to affirm one’s sense of self (as Vasey does) and another to imply that,
because it is possible to deal with experiences positively, it is therefore sometimes a good
thing to have been excluded from opportunities to form relationships to start off with. If
living with the impact of desexualising, demeaning expectations and stereotypes around
gender and impairment were really such a non-issue, there would be little reason for
thinking of disability as oppression at all. The fact, though, that these are identified as
disabling barriers to be challenged is a recognition of the rights of disabled women to be
able to control and determine their own lifestyles – having the right to accept or reject
conventional roles and relationships on their own terms – rather than having to always
accept the limited choices on offer.
The argument set out by Swain and French (2000) appears to be trying to conflate
disability and impairment, clouding rather than clarifying the distinctions outlined in the
social model. This would perhaps be acceptable if it were not for the statements
definitely rooting the affirmative model within the social model: “an affirmative model is
being generated…through building on the social model, within which disability has been
redefined” (Swain and French, 2000: 578). As they later say in another discussion on the
same subject:
in recognising a non-tragic view of disability, it is essential that this is set in the
context of the social model of disability and the oppression and discrimination
faced by disabled people (Swain and French, 2004: 37).
The problem here is illustrated in the statement that:
though it is more difficult for disabled people to form sexual relationships, because
of disabling barriers, when they do any limitations imposed by impairment may,
paradoxically, lead to advantages (Swain and French, 2000: 575).
The enjoyment of a more interesting sex life as a result of being impelled to
experiment has to do with imagination and impairment rather than with disability. As is
acknowledged, the disabling element has to do with the barriers (physical and social) that
create problems for disabled
people in entering sexual relationships in the first place. People with impairments
have the right to enjoy sexual relationships without experiencing the negative
judgements, assumptions and prejudice that disability involves. Disability is not
something to be affirmed.
Disability Arts
The argument is tenuous which cites disability arts and culture as a collective expression
of the idea that there are benefits of life style and life experience in being impaired and
disabled (Swain and French, 2000: 569). While the disability arts movement has had at
its heart the challenging of personal tragedy images and affirmation of the rights of
people with impairments to self-respect and to feel good about being who they are
(Hevey, 1992; Pepper, 2003; Masefield, 2006), it has also been a major focus for
campaigning against disability. Disability Pride does not mean that disabled people wish
to celebrate experiencing an unequal oppressive social relationship, but that they are
coming together in order to protest and demonstrate, using arts and culture among other
strategies, against being socially marginalised and excluded. There is a subtle difference
between being a member of a campaigning group demonstrating against disabling
barriers and being glad that you are disabled so that you can be a member of a
campaigning group demonstrating against disabling barriers. There is a difference
between being a member of an oppressed group and enjoying being who you are, able to
like and love yourself as you are, and being a member of an oppressed group and
enjoying your oppression.
John Fiske (1995: 58) has noted that:
the recognition of social difference produces the need to think differently: thinking
differently reproduces and confirms the sense of social difference. What is crucial
here is that the thinking is different…not divorced from social reality: thinking
differently involves the subordinate in making their sense of their subordination,
not in accepting the dominant sense of it or in making a sense with no relationship
to domination.
The ‘thinking differently’ of the disability arts movement involves a reappraisal of what it
means to live with impairment in a disabling society. The expressive performance and
output of disability arts are an exploration of the ways in which disabled people
experience their bodies; and of how they relate to those bodies and to their physical and
social environments within a context of domination: “I’m in love with my body – it’s the
only one I’ve got” (Holdsworth, 1989: 16). “But let me tell you this body has
been reclaimed” (Napolitano, 1993: 12).
And he looks at the crowd on the TV screen
With their wheelchairs, their sticks and their guides
They are brandishing banners
They are pissing on pity
And they celebrate difference with pride
And something stirs inside
(Stanton, 1995: unpaged).
In affirming impairment, I would suggest that the disability arts movement is also
explicitly rejecting disability, when disability is understood as personal and social
oppression. As Alan Sutherland (2004: unpaged) expresses it:
We break through the idea, presented to us by the medical profession and disability
charities in particular, that our situations are different and unrelated, and come
together not as the blind or the deaf or the epileptic, or the spastic or the arthritic,
but as disabled people.
People with diverse impairments are united by a shared knowledge and experience of
disabling barriers and collectively they work to challenge and undermine those barriers.
Time for Definitions
The central assumption of the tragedy model is that disabled people want to be
other than as they are, even though this would mean a rejection of identity and self
(Swain and French, 2000: 576).
The affirmative model stands in opposition to this in affirming the lives and experiences
of people with impairments as valid. In accepting this, what we have here holds promise
not just as a tool for analysis of the lived experience of impairment within a disabling
society and for reconciling the conflicting perspectives of feminists and social modellists,
but for disabled people as a framework “for making sense of themselves as actors in their
own cultural worlds” (Willis, 2000: xiv). The issue is that, while this article addresses
the meaning of disability (Swain and French, 2000: 569) it does not clarify. While we are
told what the affirmative model is ‘about’ and what it is ‘like’, we are not told what it
‘is’. While it is acknowledged that it is a summary of an affirmative model (Swain and
French, 2000: 580), there is, I feel, a need for a set of definitions in order that we can say
concisely what we mean when using this term.
It is because the words we use are important in terms of framing the interactions we
are involved in, and the roles and expectations that we hold of ourselves and towards one
another – for example, as disabled people relating to ourselves or to non-disabled people,
or as non-disabled people relating to disabled people – that definitions have their uses.
While many organisations for disabled people (as opposed to organisations of disabled
people) in the disability industry would give assent to the proposition that the main
difficulties faced by disabled people are social and attitudinal, this does not necessarily
mean they work within the social model as defined by disabled people. The marketing
slogans of numerous charities illustrate this point. ‘See the person, not the disability’
(Scope, 2005), while well-meaning, implies that trapped within each flawed disabled
body, there is imprisoned a healthy, ‘normal’ person: the true self. ‘Turning disability
into ability’ (Capability Scotland, 2007b), suggests that with appropriate charitable giving
and care, disabled people can be helped to overcome their ‘afflictions’. I recently ran a
Disability Equality Training session in Edinburgh at which a day centre manager made
the comment:
I’m glad you’ve told us about the affirmative model. We’ve been using the
affirmative model for years. We think all our users are lovely people.
If the affirmative model is to be effective, it must be more than about identifying
disabled people as ‘lovely’. It must place the experience of impairment within the
context of disability as social oppression without leaving room for ambiguity. To this
purpose I tentatively propose the following as affirmative model definitions:
Impairment:
physical, sensory and intellectual difference to be expected and respected on its
own terms in a diverse society.
Disability:
the loss or limitation of opportunities to take part in community life on an equal
level with others due to physical and social barriers.
The definition of disability proposed here is a variation of the social model definition
adopted by Disabled People’s International (DPI) in 1981 (Barnes, 1994: 2). Whereas the
DPI definition identifies disability as ‘the loss or limitation of opportunities to take part in
the normal life of the community on an equal level with others due to physical and social
barriers’, I have removed the term ‘normal’ from the affirmative model
definition. As numerous disabled writers have observed (e.g. Davis, 1995; Oliver, 1996;
Thomson, 1997), ‘normality’ is a problematic concept.
Where the proposed affirmative model significantly diverges from the social model,
however, is in its definition of impairment. There is no mention here of ‘functional loss’,
‘individual limitation’, ‘lack’ or ‘defect’ – all heavily loaded terms - as there are in the
definitions of UPIAS (1976) and DPI (1981). Rather, impairment is represented simply
as one characteristic of human difference among many. There is room within this
definition both for feminists’ recognition of the sometimes painful realities of embodied
experience and for disability arts’ claim to self-respect and validation of identity.
Conclusion
Just as the social model is a practical tool, not a theory, an idea or a concept, so this
affirmative model is intended. It is a framework that recognises both the importance of
and significant distinctions within and between ideas of diversity and equality; and can be
used to argue that both be taken into account. In this, I suggest that the definitions here
are useful in providing a framework inclusive of ideas relating both to recognition and
redistribution (Fraser and Honneth, 2003). An affirmative understanding of impairment
as valid difference provides a basis within which to root claims for inclusion as equals
within a diverse society; while an understanding of disability as socially-imposed
restriction of activity involves an acceptance of the need to address barriers to equality.
There is a strong sense among many disabled people that they would not
necessarily want to spend their whole lives in the mainstream as it presently exists even
were this made possible (Conroy, 2006). If the mainstream is conceived as a space from
which people with impairments are largely excluded – a space where there is considered
a right way of doing things and where other ways are considered of less value – then it is
a space characterised by dullness and sameness. What is established is the right of people
with impairments to be able to choose their own lifestyles and ways of getting things
done. If this means wanting to be with other people with impairments, with people who
share a knowledge of another way of being, rather than striving to join in with the often
bland and predictable mainstream, then this must be recognised as a valid choice.
Richard Hoggart (2005: 51) comments that “true democracy allows each person or as
many as wish it to be individuals – quirky (and) rough at the edges”. Disabled people
reject communitarianism, described by Hoggart
(2005: 5) as “a debased form of community spirit”, preferring to be effective self
choosers who, when they wish, locate themselves outside the large groupings that are
endlessly represented as desirable. Herbert Read (2002: 29) observed that:
the whole of our capitalist culture is one immense veneer: a surface refinement
hiding the cheapness and shoddiness at the heart of things.
Being positioned as an outsider can provide an opportunity to gaze critically at the
mainstream, a point that is at the heart of Disability Studies. If this leads to being wary of
the attractions of the ordinary life of the community, an affirmative sense of self
establishes the claim to the right to be different.
Stephen Duncombe (2007: 18) states that “reality is always refracted through the
imagination, and it is through our imagination that we live our lives”. Identity is not a
fixed, inner characteristic but a struggle, emerging and re-emerging as the stories which
we use to live develop, and dependent on the choices and decisions that we make. It is “a
creative work of the imagination…grounded in the real world in which it functions”
(McAdams, 1993: 112). The affirmative model does not provide some kind of magic
glass through which disabled people can look and then say “Oh, everything is fine now,
I’ve got a positive disability identity”. There will be days when as disabled people we
(along with everybody else in late modern capitalist society) get fed up with ourselves
and our limitations or about situations in which we find ourselves. But there is a big
difference between feeling temporarily low and feeling constantly negative about
ourselves because we have not the words or ideas with which to construct positive private
narratives.
Everywhere we go, we are charged with telling stories and making meaning –
giving sense to ourselves and the world around us. And the meanings we evoke
and the worlds we craft mesh and flow, but remain emergent: never fixed, always
indeterminate, ceaselessly contested (Plummer, 1997: 20).
The personal tragedy model provides a storyline through which impairment can
only be experienced as a discreditable characteristic. The affirmative model definitions I
have proposed are intended to provide a basis for a self-respectful and assertive stance to
be taken in the face of social and cultural assumptions of tragedy. Whereas the social
model provides a tool for the structural analysis and explanation of the poverty and
disadvantage experienced by people with impairments in a disabling
society, the affirmative model, building upon the social model, provides a
framework for the personal understanding and address of the day-to-day interactions in
which we are continuously engaged.
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CHAPTER 3
A Case for the Sociology of Impairment
Thomas Campbell
Introduction
The social model’s strength is its simplicity. Its critics sometimes lambast it for not
taking into account the experiences of people with specific impairments. The sociology
of impairment should aim to be distinct from a social model of disability, and would
ultimately enrich an analysis of disablement and therefore by proxy it would improve the
analysis provided by the social model. The social model has been perhaps the most
important tool for raising consciousness amongst disabled people, analysing policies and
explaining the process of disablement. It seems fitting therefore to not attempt to revise
the social model, but instead provide other analytical tools for both the academic analysis
of disablement, and for political action.
Since the mid-1980s, across the social sciences and humanities, the lack of an
analysis of the body has been recognised and numerous attempts have been made to
reposition corporality at the centre of critical thinking (Turner, 1984; Butler, 1990; 1993).
This movement has predominantly been engendered by work hitherto concerned with
gender and sexuality. As an emerging field of enquiry disability studies has often tried to
distance itself from a concern with the body, with writers such as Mike Oliver (1996a)
declaring that disablement has nothing to do with the body, the concept of disability
importantly proposed a definition of disablement as oppression to counter the oppressive
idea that disabled people were oppressed because their bodies were different, instead
suggesting that society does not cater for how disabled people differ.
The principle argument of this chapter is that the sociology of disablement would be
enriched by the development of a sociology of impairment which primarily dealt with the
historical development,
formation and ossification of ‘accredited impairment categories’. The development
of this specialism may shed some light on why particular impairments are problematised
at particular spatial and temporal points. The sociology of impairment proposed here is
essentially a sociology of the various systems, practices and processes that are utilised in
the government of disabled people, its closest relation would thus be the sociology of
knowledge.
A further argument proposed in this chapter is that much theoretical and empirical
work has previously been conducted that is relevant to this program, and these theoretical
and empirical insights can be drawn upon to enrich the study of disablement and to
suggest possible frameworks through which a sociology of impairment should precede.
Within disability studies these include historical accounts of disability such as HenriJacques Stiker’s (1997) work, Deborah Stone’s the Disabled State (1984) or Lennard
Davis’ (1995) Enforcing Normlacy. Outside of disability studies Michel Foucualt’s
History of Madness (2001; 2005) and History of Sexuality (1979) can be understood to be
dealing with impairment categories. The sociology of knowledge proposed by Karl
Mannheim (1936; 1986) and Norbert Elias (2000) also offer insights as to how we may
wish to conduct a sociology of impairment. Further empirical studies have also been
drawn upon (Pollack et al., 1993; Wailoo, 1999; Kerr, 2005). I attempt to distinguish my
conception of a sociology of impairment from both the work of Bill Hughes and Kevin
Paterson (Hughes and Paterson 1997; Hughes 1999; 2000; 2002; Paterson and Hughes
1999), and the criticisms of a proposed sociology of impairment by Colin Barnes (1996)
and Oliver (1996b) by suggesting that they have a different conception of the vocation of
sociology to me.
Disability Studies and the Study of Impairment
The social model crucially developed a conceptual distinction between impairment and
disablement (UPIAS, 1976; Finkelstein, 1980; 1981; Oliver, 1990; Barnes, 1991), a
distinction that has been drawn upon repeatedly by disability activists to criticise social
relations that they consider to be oppressive. The social model of disability has been a
hugely successful tool for disability activists’ battle against disablement (Barnes, 1991).
Since the mid 1990s, however, critics within the disabled people’s movement and
disability studies have suggested that the social model should take account of impairment,
or that it ignores experiences of impairment in its theorisation of disablement (Morris,
1991; Crow, 1992, 1
996; French, 1993). This is to hamper the usability of the social model, as it represents a
small group of people’s experiences of disablement. My argument is thus simply that we
should maintain a conceptual separation between impairment and disability. We must
begin, however, to understand impairment sociologically. Only then will we develop a
fully sociological understanding of the social, economic, political, scientific and cultural
processes which together intertwine to produce disablement as we understand it today.
Disability studies is thus impoverished without a sociological understanding of
impairment, as it is unable to account for the manner in which administrative and
scientific practices, regularities and knowledge about impairments take part in the
production of relations of disablement.
The sociology of impairment will thus follow Nikolas Rose (2001: 20) in
recognising that:
Medical thought has also been fully engaged in the ethical question of how we
should live - of what kind of creatures we are, of the kinds of obligations that we
have to ourselves and to others, of the techniques which we can and should use to
improve ourselves, and the kinds of persons we should strive to be.
The critical focus of the sociology of impairment is not purely restricted to the study of
medical thought. Many groups have different knowledge about impairments and they
would all be analysed: physicians; psychologists; bureaucrats; educationalists. The
sociology of impairment would thus be concerned with studying how these particular
institution’s knowledge about ‘impairment categories’ is formulated; how they interact
with other organisation’s knowledge about impairment; how particular impairment
categories ossify and become institutionalised and the political ideology and moral values
they have to rely upon to achieve differing degrees of administrative acceptance.
Whilst Abberley (1987) Barnes (1996) and Oliver (1990, 1996b), show some
sympathy for the project of the sociology of impairment, both Barnes and Oliver show
some trepidation towards it as a critical endeavour. Barnes’ comments, responding to
criticisms of the social model of disability perhaps reveal why he takes such a stance:
People can only talk of their own experiences of impairment. This makes any
notion of a ‘social' model of impairment extremely difficult, if not impossible, to
conceive (Barnes, 1996: 4 emphasis in original).
The study of individual’s experiences is a relatively recent conception of
sociology. The German sociological tradition emerged out of several disciplines, one
them being history (Antoni, 1959), and its classics have often been sociological studies
which took a historical view of the study of long term social processes (Weber, 1930;
Troeltsch, 1931; Wolfflin, 1932; Elias, 2000). It is proposed, therefore, that the sociology
of impairment will attempt to identify and analyse the various social processes which lead
to the problematisation of differences; identification of impairment categories;
ossification of impairment categories and in some cases the de-problematisation of
impairment categories. This sociology of impairment would therefore draw upon
Mannheim and Elias’ vision for a sociology of knowledge (Mannheim, 1936; 1986; Elias,
1971; 1987a) and Foucauldian histories of the present (Foucault, 1977; 1979; 2001; 2005;
Hacking, 1982; 1990; Rose, 1985; 1999). If the sociology of impairment is framed in
terms of the sociology of knowledge about impairment and how that changes, becomes
institutionalised or declines through history, then it becomes much easier to conceive of a
sociology of impairment. The sociology of impairment therefore should not study
individual experience. Moreover, I take issue with Oliver’s (1996b: 7) suggestion that
“the traditional role of the sociologist is giving `voice to the voiceless'”. Again this is a
recent conception of sociology that I would argue ultimately individualises the study of
disablement rather than sociologising it. I understand sociology to be the study of social
relations, social processes, social change and not an attempt to document individual
experiences, which have hitherto been un-documented.
Firstly, I am not suggesting that we develop a social model of impairment, the
project is instead concerned with developing a sociology of impairment. The distinction
here is crucial. The social model of disability’s primary goal is to operate as a tool, to reconceptualise disablement for disabled people and for their organisations, but it is
unlikely that a social model of impairment would serve the same purposes. We must
develop a sociologically informed theory of impairment to enrich the study of
disablement by sociologists (including those sociologists who also happen to be disability
activists). Barnes’ (1996) inability to conceive of a social model of impairment is due to
his conception of the nature of sociology. I would not conceive of a sociology of
impairment to be concerned with the study of people’s experiences of impairment.
Instead the sociology of impairment would be concerned with: analysing the social
relations in a society which at a given historical period have coalesced to problematise a
particular impairment or make it visible; examining how impairment
categories are co-opted by particular medical, administrative and lay groups and
studying how particular impairment categories can disappear. The sociology of
impairment is thus concerned with the problematisation of difference across historical
periods and geographical areas rather than attempting, as much recent sociology has, to
give a voice to a particular group, whose opinions and experiences have previously been
hidden.
My proposal for a sociology of impairment is, therefore, an attempt to develop a
sociology of impairment, which will be crucial in the development of a comprehensive
sociology of disablement. It is not an attempt to criticise the social model for excluding
impairment but instead to enrich sociological understandings of disablement by providing
a framework for how impairment may be studied. Paterson and Hughes (1999) have
hitherto called for the sociology of impairment to be focused around the
phenomenological study of the body. I, however, would like to present this chapter as
offering an alternative call for studying impairment, invoking historical research
concerned with the constitution of ways of construing the body and impairment. This is
done through analysing particular medical, bureaucratic or lay organisations; rather than
as Hughes and Paterson (1997) have done, focusing on bodily experience. Across several
papers Hughes and Paterson (Hughes, 1999; 2000; 2002; Hughes and Paterson, 1997;
1999) elaborate what the sociology of impairment would be concerned with and the
theoretical traditions it would draw upon; their work draws heavily on phenomenological
philosophy, specifically the work of Maurice Merleau-Ponty (2002). By focusing on
individuals’ embodied experience of impairment in the present, Hughes and Paterson, to
my mind, rather than enriching the analysis of disablement begun by the social model,
distract our attention away from the pragmatic and politically oriented decisions of the
social model. To focus our analytical and political concerns upon the analysis of
individual’s experiences of impairment to me seems inappropriate as it re-focuses
attention upon the individual, which I feel is counter-productive from both a political and
sociological point of view. The sociology of impairment I am proposing should thus be
distinguished from that of Hughes and Paterson as it focuses on the emergence,
development and ossification of impairment categories rather than on the embodied
experience of disabled people.
Critics of the social model such as Jenny Morris (1991), Liz Crow (1992, 1996),
Sally French (1993) and Tom Shakespeare (2006), have asserted that the social model of
disability is an outdated ideology that
needs to be renewed in order to take impairment into account. Morris’(1991: 10)
argument suggests that:
there is a tendency within the social model of disability to deny the experience of
our own bodies, insisting that our physical differences and restrictions are entirely
socially created. While environmental barriers and social attitudes are a crucial part
of our experience of disability - and do indeed disable us - to suggest that this is all
there is to it is to deny the personal experience of physical or intellectual
restrictions, of illness, of the fear of dying.
This argument may be somewhat utopian; in a society which has radically different moral
values, the restrictions posed by Morris would not be an issue: the fear of dying, inability
to accept physical difference, or cognitive difference, would appear to me to be problems
that would cease to exist if are our society‘s moral values assumed difference rather then
homogeneity (Bauman, 1993). Disabling moral values would thus be the cause of the
negative experiences described by Morris (1991), they are not incurred by an individual’s
biology. The study of how moral values have intermeshed, interwoven and taken part in
the formulation of impairment categories is exactly the kind of endeavour which would
be appropriate to the sociology of impairment. Nietzsche’s (1994) genealogy of good
and evil, and other historical studies that have been conducted in his wake (Foucault,
1977; 1979; Procacci, 1978; Hacking, 1982; 1990; Rose, 1985; 1999; Ewald, 1990),
would thus be the appropriate place to begin a search for how one may wish to conduct a
sociology of impairment.
Morris (1991), Crow (1992; 1996), French (1993), Shakespeare and Watson (2002),
and Shakespeare (2006) seem to be arguing from the perspective that there is a level of
human experience which is not (at least partly) construed by the interactions of particular
social, political, moral and economic forces. This perspective is sociologically naïve, as
all experiences are mediated through language, culture and social relations which are
passed down inter-generationally (Elias, 2000). Embedded in these cultural products are
moral values that frame our experience of bodies, for instance, that we should fear death
(Neitzsche, 1994). Morris’ (1991) naturalising of these values should be considered
problematic, as by leaving scientific, moral and administrative values concerned with
individuality unquestioned, it allows for some disabling values to be naturalised. It is
precisely the historical development of these concepts and their naturalisation that we
must endeavour to study, because ultimately it
is from these moral values that the roots disabling social relations grow.
The Case for the Sociology of Impairment to be a Historical Endeavour
What clues does the study of language, in particular etymological research, provide
for the history of the development of moral concepts?
(Nietzsche, 1994: 32-33)
What does the historical study of moral values or concepts have to do with the
sociological study of impairment? I would suggest that a fertile way of developing a
sociology of impairment would be to consider the medical categories used by physicians
and the bureaucratic categories deployed by public bodies to differentiate, sort and label
disabled people, not only as technologies for government, but as individual moral values.
Impairment categories typically serve as symbols to legitimise a particular service
provision, be it bureaucratic, medical, technological or personal support. An impairment
category thus functions as a moral value alerting a particular organisation to the fact that
they are obligated to provide certain kinds of support to individuals accredited with this
impairment. Impairment categories should, thus, be considered as technologies of
government concerned with differentiating people with impairments from the rest of the
population. When our analytical attention is directed towards technologies of
government, then our research should proceed in the following manner:
the target of analysis…[isn’t] “institutions,” “theories,” or “ideology” but practices
- with the aim of grasping the conditions that make these acceptable at a given
moment; the hypothesis being that these type of practice are not just governed by
institutions, prescribed by ideologies, guided by pragmatic circumstances whatever
role these elements may actually play - but, up to a point, posses their own specific
regularities, logic, strategy, self evidence, and “reason” (Foucault, 2000: 225).
The sociology of impairment as I envision it will be concerned with analysing how
particular regularities have emerged in disciplines such as medicine, to recognise or
problematise a particular biological or cognitive difference as an impairment. We will
study how logics of what impairments should be recognised by the state or particular
institutions emerge; we will be intending to uncover the political ideologies that these
logics are dependent upon. We must study how it becomes ‘self-evident’ to physicians,
bureaucrats, or lay groups that a particular ‘difference’ is an
impairment. Moreover, we must be concerned with analysing how and why
particular rationalities emerge that legitimise the medical and administrative
problematisation of difference as an impairment. These rationalities are, of course,
embedded within certain political ideas and particular moral values. We must attempt to
approach them objectively and coldly so that we can analyse how particular rationalities,
moral values and political ideologies serve to differentiate and distinguish impairment.
The sociology of impairment would deploy historical and etymological research in the
development of these moral concepts, rationalities and frameworks of logic.
My conception of a sociology of impairment builds upon Stone’s (1984) study of
the ‘administrative concept of disability’, where:
The concept of disability is fundamentally the result of political conflict about
distributive criteria and the appropriate recipients of social aid. Instead of seeing
disability as a set of objective characteristics that render people needy, we can
define it in terms of ideas and values about distribution. A political analysis must
therefore begin by elucidating the dimensions of the disability concept that give it
legitimacy as a distributive criterion (p.172).
Stone is thus conducting a political analysis of the administrative category of ‘disabled
person’, she provides a lucid analysis of how the administrative category has come to be
accepted by particular public and administrative organisations. The sociology of
impairment therefore has a similar vocation, it must be concerned with how particular
impairment categories became legitimised; the moral values, political ideologies and
philosophical assumptions that were deployed in this process of legitimisation. It is,
simply put, the study of political forces and of how they have interacted in the
construction of a diagnostic or administrative category.
Similarly, to the projects of Foucault, Rose and others we will attempt to study: the
philosophical engagement of medicine, psychology and bureaucratic systems in relation
to what impairments are; the legitimacy of an impairment category or its acceptance;
what particular support, intervention or response an impairment may necessitate; their
ossification; their development; even the disappearance of an impairment category (Rose,
2001: 20).
History and Disability Studies
The emergence of disability studies as a viable object for sociological
investigation has occurred during a period categorised by Nobert Elias (1987b) as a
retreat into the present, where the attention of sociologists has often shifted towards
studying the present rather than studying how the present came into being. In recent
years a number of studies have emerged that have attempted to analyse the history of
disability (Stone, 1984; Davis, 1995; Barnes, 1997; Stiker, 1997; Thomson, 1997;
Metzler, 2006). Many of these studies have been concerned with literary representations
of disabled people (Davis, 1995; Thomson, 1997) or have remained within the confines
of traditional approaches to history (Metzler, 2006). The discussion below attempts to
utilise these mostly asociological studies to formulate sociological concepts that will be
useful in the historical study of the development of impairment categories. From here on,
previous researches into the history of disablement shall be considered, to allow us to
attempt to explain how a sociological analysis of the emergence of a diagnostic category
used to identify an impairment may be conducted.
In 1982 Henri-Jacques Stiker’s Corps infirmes et sociétés (A translation was
published in 1997) was published in France. The central problem being interrogated by
Stiker’s historical thesis is the moral hegemony that the concepts ‘equality’, ‘similarity’
and ‘sameness’ have achieved, and their relation to the subjugation of disabled people.
This historical re-evaluation of a deeply embedded moral value, that has seemingly
remained unquestioned and is regularly utilised to provide a foundation for political,
personal and business decisions, is the key challenge that Stiker presents us with. This
challenge is thus unsettling, as it questions the reasoning for basing a disability (or a
sexual, or race) politics on achieving equality, or on integration with the ‘normal
population’. Stiker understands the concept of ‘normalcy’ as being necessary for the
existence of discourses such as equality, inclusion and equal service provision.
Moreover, Stiker contends that without ‘Normality’ the concept of disability would be
unthinkable. The reliance on this potentially awkward and objectionable concept by
these hitherto unquestioned discourses thus problematises them. This call to historicise
disability, to unveil the different ways that ‘disabled people’ have understood themselves
and have been understood by others, for Stiker relates to the project of re-evaluating the
concepts and terms that govern both disability politics and the political debate when it
turns to disability issues. The historical formulation of words like ‘inclusion’,
‘integration’ and ‘equality’, must be investigated so that a picture of why people with
impairments become disabled people can be constructed. If we are to study how the
modern concept of ‘disability’ has emerged, then we should
investigate how specific impairment categories have emerged through their
constitutions by political forces, and how they have been accepted by institutional bodies.
Rosemarie Garland Thomson’s (1997) proposition is that the medicalised body that
disabled people find themselves with today, is a recent historical formulation. She
suggests that the representations we have of disabled people in antiquity imply that
disabled people were understood as ‘wondrous monsters’. In the nineteenth century
disabled people’s bodies were considered to be ‘fascinating freaks’. Thomson is not
suggesting that these are better ways of thinking about the disabled body, but merely
drawing attention to the historically contingent nature of the way that disabled bodies
today are understood; which in turn suggests that in the future, bodies with impairments
could be understood in different ways. Crucially, her analysis of American literature and
the American Freak Shows does investigate how these alternative ways of
conceptualising the disabled body resulted in practices and conditions that she deems to
be positive. Thomson (1997: 75) makes the acute point that the jurisdiction over the
‘production of freaks’ has shifted from entrepreneurs and the public, to physicians and
scientists. These changes in the jurisdiction of governing ‘extraordinary bodies’, should
be central to the concerns of the sociology of impairment. Thomson may make this
proposition but her research seems more concerned with studying the different
representations of disabled people than with the political and social reasons why and how
such changes in jurisdiction take place.
Thomson (1997: 114) makes an analytical comparison that alerts us to the
consequences of how the body is understood:
The concept of the norm that Foucault finds emerging in the eighteenth century thus
characterizes bodies with the differences we call disabilities as deviant rather than
distinctive.
This quotation encapsulates what is important in Thomson’s research is the assertion that
the ontological premise from which all understanding of disability in American society is
based has shifted; and not necessarily for the better. A sociological study of impairment
would focus its attention on investigating how this took place, what relations of power
were developed to allow for this transformation and what political, ethical, economic and
medical debates informed this change. It would also study how the emergence of
normality affected the development of individual impairment categories and the
reasoning behind the emergence of particular biological or cognitive differences, thus a
more complex and
nuanced analysis of how disablement has been constituted may emerge, enriching
disability studies as a whole.
Stone’s (1984) The Disabled State begins from the contention that “Disability is a
formal administrative category that determines the rights and privileges of a large number
of people” (p.27). For Stone, disability has been constituted as an administrative
category in three geographically and temporally distinct periods: nineteenth century
Britain, late nineteenth century Germany and the USA in the twentieth century. Stone
has focused much of her other scholarly pursuits on the emergence of insurance,
particularly social insurance. This analytical focus is continued in her historical
scholarship on disability. Stone’s (1984) analysis thus articulates the importance of the
disability category with the establishment of social insurance, and with the importance of
social insurance for the delimiting of who can and who cannot be considered as a
‘disabled person’. Stone’s (1984: 58) analysis reveals several key historical details, such
as the relation between an individual’s earning capacity and the legitimacy of one being
considered as disabled, and the importance in establishing medical practitioners as the
legitimate exercisers of this labelling category. Moreover, Stone’s (1984: 83-84) analysis
points to the tensions between medical professionals and policy makers in establishing
the category of the ‘disabled person’.
It is the focus on the emergence of the definition of disability that gives Stone’s
account an analytical character that is missing in the other histories reviewed above.
Moreover, the strength of Stone’s argument contra the other historical sources discussed
above is that she presents a political analysis of the emergence of disability as both an
administrative and a clinical category. By not conflating the two divergent histories
under investigation here, Stone is able to focus on the interactions between political
groups concerned with defining disability and the interests of the medical profession in
establishing the limits of the clinical term. Stone’s (1984) careful and measured approach
to the writing of the history of ‘disability’ offers key insights into how a history of
disability should be approached:
The concept of disability is fundamentally the result of political conflict about
distributive criteria and the appropriate recipients of social aid. Instead of seeing
disability as a set of objective characteristics that render people needy, we can
define it in terms of ideas and values about distribution. A political analysis must
therefore begin by elucidating the dimensions of the disability concept that give it
legitimacy as a distributive criterion (p.172).
From Stone we learn the value of studying the development of ‘disability’ as separate
medical and administrative categories. Stone offers us a useful analytical basis for
studying the interactions, conflicts and resolutions made between differing groups in
defining what it means to administrate, govern and speak of ‘disabled people’. To fully
understand this process we must also study the development of impairment categories
and how they have interacted with one another and with the separate medical and
administrative categories of ‘disabled person’.
The three histories of disablement discussed above all problematise ‘normalcy’,
identifying it as the core differentiating concept in the historical understanding of
disablement. The implications of rhetorical statements by Davis and Thomson are that a
sociological-historical analysis of disablement is needed so that the phenomena can be
understood. However, they offer us a para-sociological analysis (Kilminster, 2001) based
primarily on literary representation rather than on socio-political factors that constitute
the categories of ‘normality’ and ‘abnormality’ that compose the processes of
differentiation that makes disablement possible. From their failings we can learn to direct
our attention away from studying literary representations towards texts that can suggest
something about the socio-political construction of the triad of concepts ‘normality’,
‘abnormality’ and ‘disablement’. We must therefore ask a small, yet precise question,
which will be interrogated with meticulous theoretical rigor and precision. Asking how
and why a particular society becomes concerned with differentiating certain members of
its population as having an impairment at a specific point in history, will inform our
understanding of disablement. The ontical (or superficial) question may be why does a
certain impairment emerge as a way of differentiating individuals? The ontological (or
deeper) question however is why does differentiation in societies take place at all?
Conclusion
It is necessary to maintain a theoretical distinction between impairment and disability and
to discard our asociological conceptions of impairment. Disability Studies needs to
understand the development of impairment categories as resulting from particular social
processes guided by specific logics. Predictable critiques of the social model’s lack of
consideration of impairment will continue to emerge, unless disability studies is enriched
by sociological knowledge about the aforementioned processes. The formation of
impairment categories has been studied by countless writers and it seems inevitable that
this type of research will continue to be
produced in medical sociology and in the sociology of knowledge. Disability studies
should therefore attempt to direct this work so that it can inform an understanding of
disablement rather than letting it be perceived, as it often has been, as in conflict with the
social model.
The importance of the sociology of impairment for studying historical forces has
been outlined. It has been suggested in this paper that by focusing on political, moral and
bureaucratic forces in the formation, development, ossification or disappearance of an
impairment category, the socio-political nature of the production of impairment
categories can be emphasised. If the sociology of impairment is concerned with
individuals’ experiences of impairment then this would, in fact, serve to individualise the
study of impairment or disablement. This would be problematic on two accounts.
Firstly, it may engender individualisation of knowledge about disablement which would
be both a theoretical step backwards, and a step away from the civil rights model which
has served the disabled people’s movement in Britain so fruitfully thus far. Secondly, it
would be a step away from sociology and this research may not be as useful for the
purpose of developing a comprehensive sociology of disablement (or to use Oliver,1990
words, a ‘social theory of disability’). The sociology of impairment must therefore be
concerned with the social forces that constitute and frame impairment categories and not
with the experience of individuals. Within disability studies much work has been done
which comes close to writing a sociology of impairment, this should now be elaborated
through the writing of sociological histories of the formation of impairment categories.
Disabled people have a common experience of disadvantage and oppression: the social
model can be used as a tool for academics to understand this experience and for activists
to try and change social relations. The sociological study of impairment categories
proposed in this chapter would thus attempt to enrich these pursuits by hopefully
providing us with some understanding of why society makes impairments visible and is
structured in such a way that people are disabled. With my ongoing historical research
into the formation, solidification and institutionalisation of the diagnostic category
‘dyslexia’, I hope to make a contribution to this endeavour.
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CHAPTER 4
Coming Out Softly: An Exploration of ‘Erectile Dysfunction’
from Augustine to Scorsese
Paul Dawson
Introduction
The aim of this chapter is to explore and analyse various cultural artefacts that contribute
to the social construction of ‘erectile dysfunction’. These cultural artefacts have been
highlighted to purport that the salient structure of compulsory sexuality underpins the
manner in which we construct truths about erectile dysfunction.
The centrality of sexuality to men’s battle in becoming masculine is an integral part
of the production of men’s and women’s construction of gender and sexuality. The penis
is the focal point of the production of this construction. Potts (2001) argues that the penis
is often viewed as uncontrollable with a mind of its own which permeates the notion of
the inexhaustible and irrepressible nature of male sexuality. Medical discourses have
medicalised the penis as an uncontrollable homunculus sharing a synecdochal
relationship with the man (Potts, 2001). Furthermore, Grace et al. (2006) point towards
spontaneous erections as an example which is linked to the notion of male virility.
Therefore, an uncontrollable penis is a normative state of male identity. However, this is
only a small part of the truth of male sexual identity within contemporary Western
culture. It is the premise of this chapter that masculinity is built not upon this
uncontrollable notion of male sexuality – an animal instinct deep within the man – but
rather the control and perfection of this innate instinctual drive. Following this principle,
this chapter seeks to put forward a notion of compulsory sexuality through incorporating
the social model of disability in order to highlight how men ascribed with erectile
dysfunction are ‘Othered’. In
doing so, this chapter will incorporate an analysis of various cultural artefacts that
tackle erectile dysfunction and male sexuality. Before this, however, a definition of
erectile dysfunction shall be given.
There is a biomedical definition and a psychiatric one. The biomedical definition is
based upon a physiological problem with specific bodily aetiology: hypergonadism,
rupture following invasive surgery, and so on. The psychiatric definition is rather based
upon psychogenic aetiology. However, this ‘objective’ diagnosis of erectile dysfunction
is indebted to subjective assumptions of the discursive practice of masculine sexuality.
Nocturnal erections and the ability to reach tumescence during masturbation are the basis
of diagnostic management behind whether a man has a psychogenic problem or a
physiological one. The Diagnostic and Statistical Manual (DSM-IV-TR, 2000) adds that
male erectile disorder is also a psychogenic erectile dysfunction, which is solely the
inability to achieve and maintain an erection for penetrative sexual intercourse.
The Viagra Phenomena
Tiefer (2006) explains that before the release of sildenafil nitrate (Viagra) the population
of the US – and simultaneously those countries in the Western world who have imported
US culture – increased their sexual literacy through various examples such as Sex and the
City and the Clinton/Lewinski scandal. Sex, according to Tiefer, became a household
topic and was pushed to the forefront of people’s minds. Along with this, what sex
should be was imprinted on our consciousness. This provided the launch pad for the
‘Viagra phenomenon’ (as Tiefer refers to the appeal of the sexuo-pharmaceutical drug)
pushing Viagra into the public conscious and, as such, making erectile dysfunction (more
commonly known as impotency) a household name throughout the Western world. This
sexual problem became both an object of humour and stigma.
Although Viagra is a relatively new phenomenon, the desire for a quick cure is
influenced by the construction of discursive realities, generating normal and proper
notions of correct sex and masculinity, over the course of Western history. Reaching for
the starry cure of Viagra men are doing so with the totem pole of gendered discourses of
sexuality:
Viagra potentially offers a way to resolve both the problem of the lost erection (and
its associated anxieties) and the dilemma of the uncontrollable penis (Grace et al.,
2006: 309).
However, the miracle cure does not necessarily work and, contrary to what many people
believe, is not an aphrodisiac: the quick cure is largely a
corporate myth and has had a deep effect on the manner in which men (and women) view
their own sexuality and on the prescribed notions of what sex should be (Grace et al.,
2006; Tiefer, 2006). This is not a new phenomenon, according to Cooper and Leyser
(2000) impotency - as a discursive practice - has been with us for at least one and a half
millennia and there have always been a variety of cures available for the affliction
throughout different cultures (Boyle, 1994). I shall now highlight how popular culture
during the mid- to late-nineties represented this.
During an episode of the hugely popular television sitcom Friends the laddish Joey,
when asked what he would do if he were omnipotent, replies to the appreciation of fake
laughs; “Probably kill myself!”. Joey has misheard the word and refracted it to mean
impotent. The geek-ish Ross corrects him saying, and stressing the first syllable,
“Omnipotent!” within which Omn to Joey sounds like an “I”, to which Joey
embarrassingly comforts him with: “You are! I’m sorry”. Again there are massive
amounts of laughter. The point is deeply pertinent to the manner in which erectile
dysfunction, or in this case, impotency is viewed within contemporary culture. It is
pertinent that Joey is the sexually virile member of Friends. Joey would rather die than
have the sexual problem of impotency. His sympathy sits within the individual tragic
model of erectile dysfunction, viewing impairments as something to be pitied (Swain et
al., 2003), but as a sitcom Friends has as an overarching theme of what proper sex ought
to be. The dull monotonous consistency of what good and proper sex should be is pushed
consistently throughout the show. Monica and Chandler’s marriage stems from the great
sex that they have together and yet even their love life comes under strain when their
sexual organs are discovered to be dysfunctional and as such cannot conceive a child;
they opt for adoption. More directly relevant to erectile dysfunction: when Ross and
Rachel are gearing up to have sex for the first time, Ross accidentally crushes a juice
carton to which Rachel, fearing premature ejaculation, comforts her partner’s
embarrassing accident. Ross quickly explains that the wetness, confused by Rachel as
semen, is in fact, the crushed juice carton. Rachel, relieved, declares, “Oh! Thank God!”
Although a tired way of expressing relief, Rachel’s reference to thanking God is pertinent
to exploring erectile dysfunction.
Saint Augustine and the Post-Lapsarian Body and Soul
Saint Augustine is widely accepted as inaugurating the notion of Original Sin as tied to a
Western/Christian world which viewed(s) sex with “not
simply suspicion but hostility and loathing” (Wiesner, 2000: 273). The body - in
particular the sexual body - is seen within Christian notions as the site of sin. Weisner
colludes with authors such as Foucault (1981), Pagels (1988) and Power (1995) who
argue that Augustine is, symbolically, the original stereotype of the sexually repressive
Catholic practitioner.
To some, the idea of a repressive hypothesis (Foucault, 1998) is pushed by
Augustine more than any other writer in history. This is not surprising regarding
Augustine’s religious obviation of sexual intercourse. Here we need to look at
Augustine’s biography. From a contemporary viewpoint Augustine had grappled with
his faith from birth, with his mother being a devout Christian and his father a Pagan, and
after fathering a child with his unnamed mistress, at 33, Augustine was finally – to the
relief of his mother - baptized by his mentor, Bishop Ambrose in Madrid. Tellingly, after
this he became celibate. His life can be, and is, read as the Christian embodiment of sex:
Augustine’s writings and life embody the common perception as the “man who gave
definitive form to Christian fear of sex and woman” (Cooper and Leyser, 2000: 540). It
is difficult to perceive of a man renouncing sex as anything other than this commonly
held view when his work speaks so blatantly of sex as a sin. The title of Chapter 18 of
Book 14 of the City of God is particularly pertinent, “Of the shame which attends all
sexual intercourse” which goes on to read:
Lust requires for its consummation darkness and secrecy; and this not only when
unlawful intercourse is desired, but even fornication as the earthly city has legalised
… does not even conjugal intercourse, sanctioned as it is by law for the propagation
of children, legitimate and honourable though it be, does it not seek retirement from
every eye? (Augustine, 2000: 466).
Yet Augustine’s repressive influence is now beginning to be perceived as a
misreading of Augustine. Cooper and Leyser’s (2000) pace Foucault commentary of
Augustine argues that the Saint’s notion that the failure of the body to react to the mind’s
lust, whether procreative or lasciviousness, is a sign of the post-Lapsarian state of
Original Sin:
Sex in Paradise, Augustine believed, would have been unimaginably exquisite.
Humans would have known no frustration or interruption of desire: men would have
been spared the embarrassment of impotence (Cooper and Leyser, 2000: 542).
Adam’s Fall - and that of humanity - left him at the mercy of an unwieldy body that could
fail him at any time. The post-lapsarian soul and body are disconnected which, according
to Lyotard (2000), is a precursor to the
Cartesian cogito and the split of the mind and body. As Foucault (1981: 175-176) notes
on Augustine’s theologising:
Before the Fall, Adam’s body, every part of it, was perfectly obedient to the soul. If
Adam wanted to procreate in Paradise, he could do it in the same way and with the
same control as he could, for instance, sow seeds in the earth. Every part of his
body was like the fingers, which one can control in all their gestures. Sex was a
kind of hand gently sowing the seed.
Mellor and Shilling (1997: 95) reiterate this point when discussing Augustine’s
perception of death which:
[C]ould never be welcomed as freeing the soul from the body as it prevented the
soul’s deepest wish: to live at peace with the body.
On lust Augustine (2000: 465) tells us “while it [lust] moves the soul it leaves the
body unmoved”. The soul was the connection to God given by God: these are not the
words of a man who saw sexual thoughts and sexual intercourse as a negative act, but
rather the words of a man who knew from past experience that the exquisite nature of sex
was given, and subsequently removed by, God following the Fall: the lapse of the
paradisiacal conjunction of the body with the soul. As Cooper and Leyser (2000: 542)
propound, “The body was a site of punishment: it was not the cause of the problem”. For
Augustine impotence in the post-lapsarian earthly world was the body’s inability to be at
one with the soul which was only ever at one in Paradise. After the Fall sex divided
against itself. Original Sin in Augustine’s work is not concerned with the body per se but
rather the disjunction, a disjunction epitomised by the erectile dysfunction. In the present
day, when man is capable through the secularisation brought about by the reason and
rationality of science, one can rediscover this perfection once again (this is discussed
below).
The influential discursive element in Augustine’s work represents proper earthly
sex as that between a man and wife sanctified by God, which resonates with
contemporary compulsory heterosexuality (Rich, 1993) and heteronormativity. Feminists
such as Benston (1972) have argued that marriage is the site of an andocentric patriarchal
culture wherein the man has the rights to a woman’s body through domestic and sexual
labour. There is recourse to understand that this has an affinity to the Augustinian notion
of impotency. An impotent husband was sufficient grounds for divorce for a woman who
was in a relationship that had not been consummated by sex (Broughton, 1999: 106). As
such, patriarchy requires
sex in order to fulfil the basic rights of man as practised and represented behind the
closed doors of the bedroom.
Scientia Sexualis and Masculine Homosociality
Sexuality is everywhere, it is tracked down and made apparent by the discursive practices
of the scientia sexualis (Horrocks and Jevtic, 1999). According to Foucault (1998: 23)
“Western man has been drawn for three centuries to the task of telling everything
concerning his sex”, and so even well before Augustine’s time we have been inciting sex
to discourse. The expert knowledge of the DSM 4 tells us that there are a host of sexual
disorders (known to earlier editions of the DSM as perversions - which included
homosexuality). These disorders range from paedophilia, to the lesser known
frotteurrism (the desire to rub one’s self up against another person for sexual pleasure).
Today, with sex being opened up and legitimised as a pleasurable act, the idea of sex as
being done properly remains with us. Indeed, every lifestyle magazine attempts to
reinforce the notions of the perfectability of sex. With this holds certain exclusionary
practises for those who do not fit within the remit of these notions.
The increase in recognition and classification of sexual activities and identities
since the late nineteenth century (Weeks, 2003) has led to sexual liberationists epitomised by Ken Plummer (2003) - seeking to normalise what had previously been
deemed to be deviations or perversions. In Plummer’s work the incitement to discourse
of an increasingly sexually diverse world has encouraged him to propose the notion of the
intimate citizen. Included in his list of potential intimate citizens are the sadomasochistic
citizen and even the paedophilic citizen (Plummer, 2003). On the one hand, a notion of
rights for deviant sexualities – although of course paedophilia is starkly problematic to
the notion of citizenship – is commendable, yet on the other it is deeply problematic in
that it may be solidifying the mutable character of sexuality, placing sexuality further
under the spotlight and microscope of discourse. For the erectile dysfunctional male this
furthers his exclusion. He will be further probed, prodded and tested under the regime of
truth within a state that promotes intimate citizenship. There would be no room here for
the erectile dysfunctional citizen except as a social pariah or outcast. Plummer’s notion
of an intimate citizen is ripe within a culture that, as mentioned, cannot stop delineating
sexual behaviour and moreover a culture that is swamped and imbued with sex.
In 2002 Fergus et al. undertook a study to discover an understanding of
the way men, following invasive surgery for prostate cancer, live with the
subsequent sexual dysfunction (mainly erectile dysfunction) as a result of this procedure.
The core category they uncovered was, not surprisingly, stigma. Many men felt that they
were not ‘real’ men because of the ‘inadequacy’ and as a result tended to hide their
ascribed problem. The strength of the male sexual script - as virile, active and always
ready for sex (Potts and Tiefer, 2006) - was only discovered when the researchers heard
second hand reports that some men would rather face the potentially lethal effects of
prostate cancer than suffer from any erectile dysfunction. Rubin (2004), researching how
men accredited with erectile dysfunction talk about it, concluded that men will place their
masculine self-image before that of any meaningful discussion of their erectile
dysfunction. Rubin’s (2004: 30) study, conducted through focus groups, observes that:
the first thing the participants from the clinic did on entering the seminar room for
the discussion was to comment on the football match that was taking place that
evening.
Michael Flood (2007) describes the masculine image as rooted in the social phenomena
of male homosociality. This term refers to the manner in which men’s social bonds
reinforce heterosexuality through “male-male peer relations” (Flood, 2007: 1) wherein:
[h]omosocial bonds are policed against the feminizing and homosexualizing
influences of excessive heterosociality, achieving sex with women is a means to
status among men, sex with women is a direct medium of male bonding (Ibid.: 17).
The pertinence for the stigma exacted upon the erectile dysfunctional male within such a
sexual culture is glaringly obvious.
An outstanding example of homosociality and the masculine self image as linked to
erectile dysfunction is touched upon in the explorations of masculinity within the Martin
Scorcese film The Departed. The mob mole Detective Colin Sullivan (played by Matt
Damon) suffers from erectile dysfunction. The audience is first introduced to this when
his sympathetic psychiatrist girlfriend tells him (whilst symbolically and tactlessly
peeling a banana) that it is not that uncommon. Sullivan says nothing other than telling
her he has to go to work. Later in the film homosociality is again expressed when
Sullivan’s boss congratulates him on having a fiancé after Sullivan, whilst managing his
discreditable stigma (Goffman, 1964), tells him that his penis is working “overtime”. At
play here is the knowledge that real men do not have problems with getting it up. What is
also at play is that women are also complacent in the relational construction of erectile
dysfunctional: she ends up having an affair with Sullivan’s counterpart in the movie
due to the ‘problems’ of Matt Damon’s character. Scorsese takes this a step further
(perhaps with a glint of misogyny) and has Sullivan’s partner have an affair to feel
sexually wanted and attractive.
The social consequences of erectile dysfunction are evident within the text of The
Departed. Sullivan’s main attribute is his ability to lie throughout the film in order to
convince everyone that he is real: a real cop and a real man. His constant lying brings
him face-to-face with the true nature of what it means to be a real man as embodied in the
functional erection. The fabrications of his existence to all those except the mob boss can
be viewed as a metaphor for his failure to achieve hegemonic masculinity (Connell,
2005) and his erectile dysfunction is the embodiment of this process. Although of course
the disabling effects of a society that requires sexuality from its members is a tool for
understanding the exclusion of erectile dysfunctional men, the male sexual script may in
fact literally cause sexual dysfunction through the notion of performance anxiety that
leads to self doubt and fear of failure. Yet the pressures placed on men to perform once
these norms are internalised is great. Paradoxically, as Damon’s character highlights the
more a man appears to internalise these norms the more susceptible to erectile
dysfunction he may be.
There are many accounts of men and women with physical impairments which
reinforce the Cartesian mind-body dualism. These accounts propose that they are trapped
within their “broken” bodies. Seymour (1998: 147) refers to this as the “disaggregation
of embodiment – the separation of self and body”. However what this suggests is the
fusion of the symbiosis of self and body rather than a split. The man ascribed with
erectile dysfunction is alienated from his body yet at the same time he is alienated from
his masculine self. Although the social model of disability has predominantly focused on
structures of oppression (Barnes, 1991), there is due course to propose that the social
construction of hegemonic masculinity is part of the aetiological reality of erectile
dysfunction.
Compulsory Sexuality
It is generally reckoned that homosexuality is increasingly being normalised and
sanctioned, particularly by the State. However, this may be taking the open mindedness
of the value of diversity within a multicultural society too far. When applied to sexuality
multiculturalism is laced with as much ‘Othering’ as is applied to race. It has been
argued that we live in a society that promotes an exclusionary practice of compulsory
heterosexuality (Rich, 1993). When a given group is afforded behavioural mechanisms
through differences such as skin colour there is tendency to de-humanise the ‘Other’
(Bauman, 1989). When there is a difference in sexuality based upon the social reality of
sexual discourses, the same effect can occur. Although homosexuality has been
legitimised and homophobia is apparently sanctioned, the use of the word “gay” as a
pejorative term has been reclaimed by heteronormative practices and is now widely
acceptable in a linguistic shift of homophobic language. ‘Gay’ is now used pejoratively
as a synonym for rubbish or crap. In 2006 the BBC radio DJ Chris Moyles used the
word’s reclaimed meaning live on air by describing a mobile phone ring tone he did not
like as ‘gay’ and although publicly chastised was defended by the corporation’s
governors. The governors supported Moyles as they argued he was broadcasting to an
audience of predominantly young people, it was to be expected that Chris Moyles would
use expressions and words that listeners themselves used (BBC, 2006) and therefore
oddly the homophobic remark was excused. At issue here is that heteronormativity as
sanctioning the sexual other is still salient and by default sexual prejudice is still salient.
Illustrating exclusionary practices towards homosexuality may appear to be a digression
from erectile dysfunction. The power that heteronormativity still holds within
contemporary culture to have allowed an insidious form of homophobia to be displayed,
highlights that the open mindedness and liberalisation of sexuality is merely a superficial
toleration of sex that has been constrained and coded through long periods of western
culture.
Although influenced by a supposed repression of sexuality in western society since
at least the fall of the Roman Empire (when Augustine was theologising) has sought to
say what the normal practice of sex is: heterosexual relations. As well known in sexual
theorising there were no terms for homosexuality or heterosexuality before the middle of
the nineteenth century (Foucault, 1979) but the influence of the past millennia and a half
of Christianity upon these discourses cannot be ignored. However, these ossified
discourses have led to something exclusionary beyond compulsory heterosexuality when
we explore erectile dysfunction as disabled by a disabling society and culture. He is
disordered, impaired and excluded because Western society practices an implicit
compulsory sexuality. It is the power of the discourse of compulsory sexuality that the
erectile dysfunctional male is forced to make himself better by the standards of the
appropriate sexual norms and values of Western culture. Even when Augustine was
writing he was still promoting a compulsory sexuality: one
that even existed in the transcendental state of the Garden of Eden. As the sexual
liberationist theorists argue anything goes, but what occurs when nothing goes? The
erectile dysfunctional firstly highlights a problem within gendered notions of the male
sexual script but one that is primarily based upon the notion that one must possess a
sexuality within western culture.
God and the Rampant Rabbit
The Augustinian man who is sexually impotent is not far from Damon’s character
Sullivan in The Departed. For Augustine the impotent male comes face-to-face with
God’s omnipotence; however, when we come to realise that God’s omnipotence is an
absurd hyper-reality that could not create a more powerful being than God, we see the
paradox of the omnipotent male sexual script as represented in the hyper-masculine
sexually omnipotent man always ready for the sexual act. The exclusion of the erectile
dysfunctional male is inherent and embedded within the myth of the omnipotent sexual
male: the essentialised animal reducing man to a stud with an ever ready penis which
moves from flaccid to hard whenever there is a whiff of sexual flesh. This omnipotence
represents itself in the manner in which Ann Summers have marketed their highly
successful vibrator: the Rampant Rabbit. The advertisement depicts the evolutionary
scale: from primate to a modern man who is superseded by The Rampant Rabbit. The
animal essence of the man is present in the signifier of the evolutionary scale and yet the
man becomes impotent in the cybernetic self-gigolisation (consuming to masturbate) of
women who prefer the omnipotence of the vibrator to the impotent man who has to make
way for the sexual inheritor of the female body: a plastic Rabbit. Women’s notion of
what sex should be becomes compliant with the male sexual script and want the everready omnipotent penis. The success of this piece of sexual technology is the realisation
of Augustine’s notion of perfect paradisiacal penetrative sex. Perfect sex is made real by
the earth shattering effects of this masturbatory tool that allows sex for a woman to be “a
kind of hand gently sowing the seed” (Foucault and Sennett 1981: 176) although gently
might be the wrong word. This may appear tongue in cheek: all men may be impotent as
sexual dynamos in the face of the omnipotent and increasingly omnipresent Rampant
Rabbit; however the way in which the vibrator has been marketed is deeply serious to a
man who has been subjected to the pain, humiliation and degradation that accompanies
the social reality of erectile dysfunction.
Conclusion
C.W Mills (2000) tells us that personal biographies are embedded within history and the
public domain. Our cultural history and our personal lives are inter-wined. He tells us
that our private troubles are a series of traps. Sexuality is a private domain: sex (as
Augustine knew) occurs behind closed doors but it is more than this: it is natural, we
think of it as our essence (Foucault, 1998). When something goes wrong with it we are
deeply confused and think that there is something abnormal with us. This work draws on
a variety of sources to highlight the manner in which erectile dysfunction is constructed
in contemporary society. The strength of the power of a dysfunctional penis can be seen
in Augustine who saw it as part of the existential insecurity of man following The Fall.
Erectile dysfunction is represented in mainstream media such as Friends and The
Departed which utilise cultural conceptions of masculinity whether to gain laughs or add
to the atmosphere of a gangster movie. Whereas Friends uses it within an exclusionary
manner, The Departed subtly highlights how the problem is a threat to masculinity and as
such is managed though lies and identity manipulation.
If Plummer’s work - pertinent to an increasingly fragmented sexualised culture is realised in the future of democratic states, where anything goes, erectile dysfunction
will be increasingly marginalised. The perfection of sex as propounded through Western
discourses highlights that the erectile dysfunctional man will be further marginalised and
othered. In fact if compulsory sexuality, in allowing the self to be realised by finding its
natural essence through sexuality, the disabling effects of this will – if they are not
already – be great. If the importance of sex is reinforced and heightened through
compulsory sexuality, erectile dysfunction and other sexual dysfunctions will become
more and more common, and indeed other forms of dysfunction may become apparent.
This, the paradox of sexuality is perhaps one that can be explored in further discussions
of disability and sexuality.
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CHAPTER 5
In Search of a Flexible Model of Disability: Germany and the Disability
Rights Movement
Pauline Eyre
Introduction
This paper will trace the development of theories of disability in Germany, demonstrating
a delay in the nation’s exploration and promotion of disability issues. The decision to
speak of ‘Germany’ here, rather than refer separately to the Federal and Democratic
Republics of Germany is taken advisedly: the re-unification of Germany in 1989 stands
at a point roughly half way through the history of disability discourse in the Federal
Republic of Germany, whilst the Democratic Republic lacked any discernible disability
movement. Significant differences, both quantitative and qualitative, emerged early on
between the flowering disability discourse in Britain and the rather more tentative calls
from individuals and associations in Germany to improve the lot of disabled people. The
climate which was to engender rapid growth in British disabled organisations, and see the
birth of Disability Studies courses in its academic institutions was, for a long time, absent
in Germany. According to Corker and Shakespeare (2002), the strength of British
Disability Studies has been its close connection between scholarship and activism. I
contend that the disparity between British and German understandings of disability
centres on Germany’s delay in establishing a tradition of academic investigation of
disability. My bid to trace the causes of the reticence on the part of German scholars will
necessitate a recursive examination of Germany’s past, and it will be shown that
Germany’s tardiness in developing a disability studies agenda can be understood as a
legacy of the Third Reich.
A brief survey of National Socialist (NS) policies in respect of disabled
people will be undertaken. The Third Reich dealt with what it saw as the problem
of disability by implementing a policy which included both euthanasia and segregation.
In 1941, once the euthanasia programme had been abandoned, segregation was
maintained as the primary method of dealing with disability, a policy which remained in
place even after the dismantling of the NS regime. It should be remembered that such
policies were of their time in Western Europe, rather than uniquely a remnant of NS
ideology. Segregation, I will claim, continued to be seen as an effective management of
disabled people, because it both systematised encounters with disability and
circumvented squeamishness about NS treatment of disability by keeping disabled people
out of sight. There was, effectively, no need to examine the problem further.
I will proceed to trace the emergence of the disability rights movement in Germany.
Like the early British movement, it was dependent on its charismatic activists. In
Germany, figures such as Ernst Klee and Gusti Steiner campaigned vociferously against
entrenched, medically sanctioned, segregative models of disability. Remarkably,
Germany failed to develop a social model of disability; indeed until the late 1990s
theorists remained outside the debates about impairment which preoccupied the UK. I
will then proceed to show how, in the last few years of the twentieth century, resistance
to academic investigation in the field of Disability Studies began to be overcome. The
concept of independent living has assumed a new importance as part of a wider debate
about normalization techniques, theorized by Anne Waldschmidt (1998; 2003; 2006),
who has claimed that disabled individuals can be understood as absorbed into the shifting
bell curve of normality, with disability no longer so clearly delineated. My research
indicates Germany’s readiness to participate in a Europe-wide arena of Disability Studies.
Indeed, I will conclude by demonstrating how I understand Europe as poised at a critical
point, the time now being right for a new synthesized, cross-national model of disability.
Founding Constructions of Disability
Both the late launch and the divergent preoccupations of the German disability discourse
debate have lent it a wholly different texture to that of the British situation. Where, in the
UK, practical progress in matters of rights and services has gone hand in hand with the
development of disability studies as a theoretical concern, in Germany, disability
discourse has remained in the domain of the practical. Thus, in the UK from the very
outset, the debate has encompassed philosophical aspects of disabled being-
in-the-world (Finkelstein, 1980; Oliver, 1983). The coinage ‘disabled being-in-the-world
derives from Merleau-Ponty’s (2002) phenomenological understanding of subjectivity as
originating in embodiment, whereby the well-functioning body can recede into the
background as it becomes involved in its physical and intellectual projects. I posit the
notion of disabled being-in-the-world as that of a self acting via a body which is
thematized both through the negotiation of its own difficulties, i.e. from within, and
through the apprehension or internalization of how others see that body, i.e. from without.
In contrast to the UK situation, the German approach to a formalizing in academic terms
of material notions of disability has been, to say the least, timid; until recent years, there
has been no academic engagement with the field.
Germany’s tentativeness in acknowledging disability as an intellectual concern has
manifested itself historically in three ways, which all have an impact on the current state
of affairs in German disability discourse. Firstly, the number of activists involved in the
promotion of the discourse has been far fewer than that engaged in the energetic British
disability scene (compare for example Oliver, 1990; Barnes and Mercer, 1996; Thomas,
1999). Thus, although the discipline is acknowledged to have emerged there
contemporaneously with the British field, it seems to have lacked the same vital growth.
Secondly, the German movement has consistently, until very recently, demonstrated its
fear of intellectualization, whereas in the UK, as I have suggested, alongside the
disability rights movement grew a vigorous intellectual offshoot, which has continued to
debate the philosophical nature and implications of disability. In the UK, the widespread
implementation of the social model represented a radical shift in thinking, for it liberated
disabled people from the yoke of their individualized tragedy (Thomas, 2002). Thus,
disability came to be reformulated as a form of social oppression, whereby society
erected economic, social and political barriers which contrived to magnify and compound
impairments (Finkelstein, 2004: 13-16). The social model maintained its status in the UK
as “a touchstone of disability rights politics” (Thomas, 1999: 15-16). Despite its status as
the dominant force for the activation of disability theories, it has also been subject to
vociferous critique on the grounds that it attempts to split off the physical impairments of
the body from its disabledness, valorizing the disability, whilst side-lining impairment
(Corker and French, 1999: 2; Hughes, 2002: 66). Germany remained outside such
vigorous debate, demonstrating a prolixity, posited here as a third manifestation of its
under-confidence
within the theoretical arena of disability, in its retention of the segregation model of
disability, understood as a derivative of the medical model long-discredited in UK
theories of disability. In other words, where in the UK approaches to the subject of
disability have straddled many disciplines such as sociology (Turner, 1984; Bendelow
and Williams, 1998), ethics (Couser, 1997; Eakin, 2004) and, increasingly, in the wake of
enthusiastic interest from the United States, the humanities (Davis, 1995; Thomson,
1997), German disability discourse has, in my contention, continued to situate itself in the
bio-medical arena, lagging behind in its development of the discipline.
Any discussion of German theories of the construction of disability is, of course,
inseparable from the discourse’s place within Germany’s particular historical context,
subject to the legacy of the Third Reich, and always informed by that regime’s goal of
eradication of physical and mental ‘weakness’. Disability discourse came into being in
Britain and the United States at a time when Germany was still absorbed in the aftermath
of the NS regime and the protracted process of reckoning with individual and collective
guilt. Therefore, before proceeding to trace the development of disability discourse in
Germany, I will demonstrate how reactions to NS policies vis-à-vis disabled people
formed not merely a backdrop to the newly emerging discipline, but rather became
organically woven through the fabric of its cultural valuation. It will be shown that
attitudes to disability have remained occluded by a widespread embarrassment at drawing
attention to the issue at all, for I shall demonstrate that Germany’s tardiness at entering
the debate and its focus on particular facets of that debate is consequent on its coming-toterms with its past.
Carol Poore’s wide-ranging work (1982; 2002; 2003) into models and
representations of disability within Germany is invaluable: using as a starting point the
studies of Hans Mayer into the construction of disability as a category of outsider-dom
from the Enlightenment onwards, Poore proceeds via Joachim Hohmann’s work (1981)
to demonstrate historically contradictory attitudes to disability. Crucially, Poore (1982:
173) denotes the ideas of Hans Würtz (1932) as highly influential in the fathering of
stereotypical attitudes to ‘cripples’ which were to prove central to the development of NS
attitudes to disabled people. Würtz styled himself as a ‘cripple pedagogue’ (Poore, 1982:
168), and is understood by Poore (1982: 169) as “one of the most progressive experts of
that time in his field”, whose writings juxtaposed calls to integrate disabled people into
society alongside blatant traditional stereotypes. According to Klee (1980: 98),
Würtz invented the notion of the “cripple personality”. As Poore (1982: 169-70)
points out, Würtz’s investigation into definitive notions of the disabled personality led
him to draw up categories of ‘cripples’ whose deficiencies far exceeded previous
definitions, including the damning “handicapped by ugliness”. Würtz’s startling
conclusion was that ‘cripples’ are possessed of a defiant will which goes hand in hand
with revolutionary or psychopathic tendencies in their personalities. Amongst others,
Würtz names Rosa Luxemberg and Napoleon Bonaparte as examples of the ‘crippled’
political fanatics who set revolutions in motion (Klee, 1980: 99).
Despite his furtherance of stereotypical attitudes, and his perhaps unintentional
engendering of new prejudices, Würtz’s proposals for the potential integration of disabled
people into society were welcomed as an enlightened view at this time. His model was
founded on two basic principles: firstly, the necessity of setting the ‘cripple’ to work, not
as a mark of independence or an attempt to increase feelings of self-worth, but rather as
“an extremely necessary and effective means of social control” (Poore, 1982: 173), and,
secondly, the need to segregate ‘cripples’ from the rest of the community, a process to be
carried out at all levels from living institutions and schools through to workshops (Poore,
1982: 174). In fact, the organizing principle of segregation endured long after Würtz’s
theories had outworn their attraction. Würtz’s findings acted, not as they might have
done in a different ideological climate, as a dire warning about the lengths to which
reductive treatment of disabled people could be taken, but rather as an endorsement of
prejudice and fear. For the NS regime Würtz’s concepts of disability were ultimately
harnessable as justification of the system’s sinister plans to annihilate difference.
National Socialist Ideology
Robert Jay Lifton (2000: 45-47) points out that a mood of considerable resentment
towards the incurably ill or congenitally ‘defective’ had already taken a hold in Germany
following World War I. Robert Proctor (1988: 179) proposes that the indignation
expressed over the economic burden presented by this disabled group reflects a growing
worldwide movement towards the medicalisation of physical difference. As Lifton
(2000: 23) indicates, interest in eugenics, or, more specifically, sterilization, as a means
of sifting out criminal tendencies and mental weaknesses was gaining in force in the
United States and the UK. Lifton (2000: 24) attributes the German embracing of
eugenics, and the missionary zeal with which the NS regime implemented measures to
enforce it, to “the genetic
romanticism of an extreme biomedical vision combined with a totalistic political
structure”.
The publication which was to prove key in the NS regime’s euthanasia campaign
came in 1920 – Die Freigabe der Vernichtung lebensunwerten Lebens (Permission for
the Destruction of Life Unworthy of Life) – and medicalised the concept of euthanasia
for the incurable, the deformed and the feeble-minded, transforming the significance of
euthanasia into that of a healing work. Discussions for a putative euthanasia programme
began in 1935, and in late 1938 or early 1939, the programme of euthanasia killing was
implemented, including first newborn babies and then children under three whose
‘deformities’ and mental health problems had been reported to the authorities by
midwives and health visitors (Lifton, 2000: 50). The programme was gradually extended
to include older children and adolescents, and overlapped with the adult killing project.
In 1941, however, Hitler officially ended the general euthanasia programme, and
thereafter the killing continued in a more muted second phase – so-called ‘wild’
euthanasia, which permitted doctors to act on their own initiative, continuing to order
killing operations on an individual basis (Lifton, 2000: 56). The cessation of the
programme is attributed by Lifton (2000: 89) to widespread general resistance amongst
the German people, rather than to disquiet amongst the medical profession. The mood of
resistance was articulated by both Catholic and Lutheran church leaders, such as the
outspoken Bischof von Galen, who, Lifton (2000: 89) claims, took a courageous stand
against the developing NS ‘euthanasia’ consciousness, publicly denouncing the killing
programme. Poore (1982: 179) suggests that, whilst not all German doctors were even
aware of the euthanasia campaign “[b]y and large, the organized medical profession
welcomed the chance to take an active part in ‘separating out unproductive elements’”.
Meanwhile, the services of academic medical researchers were drafted in to provide
endorsement of the programme. In 1933:
the journals of the German Orthopedic [sic] Society were overflowing with articles
on ‘hereditary’ defects and summaries of dissertations written on such topics at
German universities (Poore, 1982: 182).
Köbsell (2006: unpaged) estimates that by the end of the NS regime about 300,000
disabled people had been murdered. Klee (1980: 77) puts the figures at 4000 children in
the Kinderaktion programme, and 100,000 adults as part of the T4 action. Poore (1982:
175) breaks the statistics down further to reveal that 120,000 of those killed were
mentally ill patients,
whilst 20,000 were sick concentration camp inmates. The final tally of lives
disposed of by the NS regime as ‘not worth living’ is unknown. Ultimately, however,
although popular unrest and protests did bring about the end of the euthanasia
programme, Poore (1982) makes it clear that the secondary means of corralling disabled
people retained its force, for:
under the Third Reich, old ideas of segregating people with disabilities gained new
force, driven forward by the racial hygienists (p.184).
This was to prove key in post-war attitudes to disabled people.
The post-war period was marked by an uncomfortable silence in respect of the
disabled population’s treatment at the hands of the NS regime. Most people knew
something of the fate of disabled people, but knowledge of the extent of NS policies and
procedures vis-à-vis disabled people was limited to the anecdotal. There seems to have
been no overt disavowal of the NS scheme for the eradication of disabled life;
remarkably, even the investigation into NS practices of the latter half of the 1970s
omitted to evaluate the policy of “destruction of life unworthy of life” (Köbsell, 2006:
unpaged). It is my contention that this failure to address the NS encoding of disability
perpetuated discriminatory practices.
In addition, Poore (2003: 38) contends that new developments in reproductive
sciences have had a special significance for Germany, with the result, for example, that
the gene technology debate depends on a particularized agenda. As Poore (2003: 38)
contends, this means that:
German intellectuals now take positions with regard to bioethics that are often quite
different from those of their counterparts elsewhere in Europe and the United
States.
Poore’s contention seems not to be based on empirical evidence, for, as Waldschmidt
(2006: unpaged) claims, “representative studies on disabled people’s attitudes to
reprogenetics and bioethics have not yet been carried out in Germany”. Nevertheless,
Waldschmidt’s view corroborates that of Poore, for she (Waldschmidt, 2006: unpaged)
claims that:
more than other segments of the German population, the disabled and their
organizations are likely to view the new technologies and the experts’ promises
with a sceptical eye.
Birth of the Disability Rights Movement
Although the charity AktionMensch (2005) suggests that Germany’s disability rights
movement may have had its roots in the Thalidomide disaster which rocked Europe in the
early 1960s, Köbsell (2006: unpaged)
locates its origin in the late 1970s, and suggests that the nascent movement was boosted
by the Frankfurter Landgericht’s (County Court) highly contentious 1980 judgement
discriminating against disabled people. Klee (1980: 76), in his commentary on attitudes
to disability within the Germany of that time, relates how the Frankfurt court ruled in
favour of a female plaintiff, that her holiday had indeed been marred by the experience of
sharing a hotel with a group of twenty-five disabled people, resulting in an award for
damages totalling half the cost of her holiday. The resulting public outcry was
insufficient to overturn the judgement, but proved grist to the mill of the disability rights
movement, which went on to capitalize, the following year, on the high profile of the UN
Year of the Disabled. Activists’ groups in the Federal Republic of Germany now began
to instigate more fully sustained and targeted demonstrations and initiatives, aimed at
raising the profile of disabled people, even culminating by the end of the year in the
development of a two-pronged drive in respect of not only assistive services but also
political representation of disabled people (Köbsell, 2006: unpaged).
Poore’s (1982: 184) observation that racial hygienists promoted the idea of
segregation of disabled people alongside euthanasia is crucial if we are to make sense of
the Federal Republic’s subsequent stance with regard to disability. As Maskos and
Siebert (2006: unpaged) have suggested, the ideology and supportive infrastructure for
the segregation of people with physical and mental impairments in medical and
educational institutions was in effect a continuation and extension of the NS policy of
systematic control of disabled people. Of great import is their (Maskos and Siebert,
2006: unpaged) claim that:
for decades in Germany, there was almost no alternative or escape for people with
disabilities from institutional care, and the nationwide net of medical registration
had been tightly webbed.
If, as I have suggested, disabled people simply dropped out of sight, unprotestingly,
in the post-war years, there is reason to suppose that this was largely due to the policy of
sequestering them in totalizing institutions which functioned, as described by Klee (1980:
53), like prisons, even in their late 1970s incarnations. The tendency to segregate people
with impairments has maintained the ascendancy in Germany. Indeed, a trend towards
increasing numbers of people housed in institutions has been discerned: if the number of
disabled people living in institutions was 103,519 in 1991, it had increased to 131,317
five years later, with the latest available figures for the years 1998-2001 showing an
increase of 55 per cent
over a ten year period, now standing at 160,346 (Bioskop, 2004: 13). Manteuffel
(2006: 1) has pointed out the discrepancy in Germany’s special schooling policies when
viewed against the European background: where, across Europe, 70 per cent of disabled
children go to mainstream schools, the figure falls to 12 per cent for German disabled
children. Günther Cloerkes’ (2003: 11-23) exploration of statistics relating to German
special schools not only makes clear the endemic nature of segregation at educational
level for disabled people, but also reveals the patchy nature of such provision: two to
three times as many children and young people are catered for in special schools within
administrative authorities which used to belong to the old Democratic Republic,
compared to numbers of those in special schools in the area formerly known as the
Federal Republic (2003: 21). Cloerkes’ position (2003: 21-22) that children and young
people are treated quite differently according to the Bundesland where they live leads to
his assertion that “disability as a statistic is socially constructed”.
The Widening Debate
Cloerkes’ conclusion is timely, reflecting a more general climate of changes in attitude to
disability in Germany at the turn of the twenty first century. At long last the resistance to
discursive investigations of disability has begun to be dislodged. The notion of selfdetermination (Selbstbestimmung) has surfaced as a prime concept in the German
disability movement, offering an alternative model to that offered by segregation.
Elsewhere, for example in the UK, this principle has been known as ‘independent living’
and has developed within the social model of disability (MacFarlane, 2004; Mercer,
2004). The German drive for self-determination owes much to the sustained
campaigning of fellow activists Klee and Steiner, who established reputations as the
foremost disability activists and theorists in Germany between the 1970s and the 1990s.
Steiner (1974a; 1974b; 1999) is at pains to point out that the movement for selfdetermination has not merely been plucked from the US or UK versions of the discourse,
but has emerged within the German discipline in its own right, and indeed, existed under
the guise of self-organized help before the equivalent US philosophy of ‘independent
living’ was known in Germany.
Of course, as Steiner (1999: unpaged) also points out, self-determination is always
based on specific circumstances, and is, moreover, always subject to the control of
supervisory authorities, with an associated threat of renewed imposition of dependent
living. In addition, disabled
individuals may find themselves caught in a dilemma: Waldschmidt (1999: 43)
draws attention to the fact that liberation from patronizing structures of institutional life is
compromised by the fact that the disabled individual draws upon her/himself the onus of
personal responsibility carried by all individuals of the neo-liberal society. Thus selfdetermination becomes a disciplinary practice, whereby the disabled individual, licensed
to participate in society, is also subject to its obligations and limitations. Maskos and
Siebert (2006: unpaged) point to employment, that is, the gaining of means to finance
participation in society, as the extra new demand made of disabled people.
In line with the widening debate about independent living for disabled people in
Germany, and with interest in the sociology of disability entering a “Boom-Phase”
(Waldschmidt and Schneider, 2002: 2), German scholarship can now be seen to have
engaged with the field of disability studies; from this period, indeed, intensification of
philosophical debate about the nature of disability spilled over into the public domain.
The years 2001 and 2002 saw two major exhibitions at museums in Dresden and Berlin,
documenting the history of disability. The wealth of material combined with its
impressive organization as interactive ‘edu-tainment’ made the exhibitions a seminally
important event in the move to shift conceptualizations of disability. Both exhibitions
drew unprecedentedly large crowds amongst the museum-going public, yet, as Poore
(2002: 185) points out, reactions amongst the press were surprisingly muted. Poore
(2002: 187), whilst recognizing the ground-breaking achievement of the exhibitions,
faults both on the grounds that they continued to treat disability as a congenital
characteristic, failing to take up the opportunity “to critique unquestioned concepts of
normalcy.” She asserts that this failure prevented the press from being “spurred on to
look at German society from the perspective of disabled people themselves” (Poore,
2002: 187). Indeed,
most of the reporters writing about the exhibition were not challenged to revise their
widely-held opinion that ‘suffering’ was the defining characteristic of disabled
people (Ibid.),
a claim substantiated by Poore’s (Ibid.) quotation from Andreas Schäfer’s narrow-minded
assertion in the Berliner Zeitung of the 15 March 2002, that “disability means suffering.
Period”.
The Berlin conference on disability, which was a result of the exhibitions, set
forth with the explicit goal of examining the history of norms and can be viewed,
according to Poore (2002: 189), as launching a
New Disability Studies in Germany. The Frankfurter Rundschau featured a
report on the conference explaining the controversial nature of this new impetus to
investigate “the social power of norms” (Meister, 2001: 23). Waldschmidt, a keynote
speaker at the Berlin conference, used the opportunity to establish the
Arbeitsgemeinschaft Disability Studies in Deutschland: Wir forschen selbst! (Working
Co-Operative of Disability Studies in Germany: We Research Ourselves), proposing that
it was imperative to develop the disability discourse exclusively by peer research. Poore
(2002: 189) emphasises the singularity of this German insistence on “separation as a
method of developing the perspectives of disabled people,” indicating the intensity of
“the oppressive exclusion to which they have been subjected in Germany”, and
contrasting the situation with that of US disability scholarship, where many theorists of
the discipline are located in English and history departments, with no attempt to exclude
non-disabled scholars from the discipline.
Normalization and Disability
Waldschmidt (2003; 2006) has forged a reputation amongst German disability scholars
based on her investigation of normalizing techniques vis-à-vis disabled people in modern
society. Her theoretical perspective draws on Foucault’s (1991) theory of the pressure
exerted by normalcy’s operation in opposition to the external structures of law and
government. By this, Foucault is referring to powers that govern by individual freedom
and responsibility, requiring individuals to regulate themselves vis-à-vis statistical
normalcy. In common with Jürgen Link (1996), who developed the concept of
‘normalism’ in the 1990s, based on Foucault’s work, Waldschmidt discerns two types of
norm. Firstly, she posits a ‘normative norm,’ dependent on the external imposition of
sanctions and rules, prescribing a norm to which individuals must conform, and
subjecting them to penalties for deviation. Waldschmidt (2006) denotes the purpose of
this normative norm as the generation of conformity and the prevention of societal
upheaval. The second type of norm theorized by Waldschmidt is the ‘normalistic norm.’
Here, the individual is required to monitor himself/herself with reference not to external
rules, but rather to the societal group in which he/she is situated. Thus, individuals
oversee their own behaviour in light of everyone else’s behaviour.
The effect of this is the continual production of a normal distribution curve based
around a mean or average. According to Waldschmidt’s (2006) model, normalistic
norms are less static than normative norms, being
oriented towards change and dynamics. Crucially, normalistic norms, necessitating
statistical evidence a priori, can exist only in highly data-oriented societies. Thus, the
disciplinary strategies of Western societies are increasingly founded on normalistic
norms. Voluntarily, in accordance with ideals of autonomy, individuals orient
themselves vis-à-vis the bell curve of normality. Waldschmidt has indicated that the
influence of normalization techniques has been so great over the past two decades that the
concept of normalcy is now becoming embedded in social policies. In respect of
disability discourse, there can no longer be a clear delineation between normality and
disability. Rather, the territory which accommodates them both is shifting and variable,
and even unnecessary. According to Waldschmidt’s understanding disability can thus be
reconfigured as a landscape which changes over time, formed and shaped by the
individual disabled subject him/herself, rather than as a pre-existing external constraint
which is imposed by society on the disabled person.
Waldschmidt (2006: unpaged) elaborates her theory of normalization techniques,
differentiating protonormalization techniques from flexible normalization practices.
Protonormalization is characterized by a community’s continuing adherence to normative
techniques, reflected in the ostracization of deviancy. Thus, protononormative strategies
are in play wherever vagrants are ejected from public amenities, where homosexuals are
ostracized, where asylum seekers are interned in remote places. Flexible normalism, on
the other hand, allows homosexuals to conduct relationships openly or permits the
integration of disabled people into the community. Waldschmidt claims that the practice
of flexible normalization is dependent on the preservation of the bell curve, even as it
naturally expands outwards towards abnormalcy. As she puts it:
the band that binds the normal center [sic] with its boundary zones must not break.
Any danger that the entire normal field could dissolve would spark a backlash, a
return to strategies that emphasize narrow normalcy zones and fixed boundaries.
(Waldschmidt, 2006: unpaged).
Waldschmidt illustrates this by reference to the current worldwide ‘war on terror’, with
its ‘zero tolerance’ of suspicious behaviour and individuals (Ibid.). The implementation
of the current UK policy of Anti-Social Behaviour Orders offers a further example of
recourse to normative strategies.
Waldschmidt (2003) asserts that the field of disability theory in Germany has
undergone significant changes over the past two decades, due
to its integration of normalization strategies. By means of close examination of
definitions of disability and impairment, at both national and international level, she is
able to demonstrate changes in understandings of the terms involved, pointing out how
these reflect implementation of practices at structural level. From July 2001, reference is
made in German law to functioning which “deviates from the range of functioning typical
for the person’s age group,” and prevents participation in social life (Waldschmidt, 2003:
92). Waldschmidt is able to demonstrate the significant change that this represents by
comparison with the previous 1974 ruling, where “abnormal functioning” was referred to,
and participation in society was not even mentioned (Ibid.). Waldschmidt (2003: 97)
goes on to demonstrate how flexible normalization techniques have been absorbed into
standard practices in the field of disability management, exemplifying the point with an
illustration from the checklist administered by clinicians to disabled individuals, requiring
them to draw their own comparisons between their situations and those of their peers.
Conclusion: The Way Forward?
This paper has demonstrated the historical reasons for Germany’s delay in developing a
disability discourse and has revealed the growth of new shoots in the discipline. It has
been shown that Waldschmidt’s work into the integration of normalization strategies in
the field of disability theory brings new light to bear on the discipline and it is highly
significant that Waldschmidt (2003: 89) now feels able to refer to the disability discourse
of Western Europe as a whole. Indeed, the implications of my findings are potentially
far-reaching. Firstly, I contend that it is now time to combine intellectual forces in our
investigation of disability, for the meaning of the word ‘disability’ can no longer be
considered resident in any one national understanding of the term, nor in any one
theoretical sphere. Secondly, flexible normalization theory provides a way of challenging
rigidly polarized categories of disability and non-disability, shifting entrenched
understandings of the meaning residing in those terms and moving towards a theoretical
examination of the material subjectivity of disabled people.
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CHAPTER 6
Early and Current Approaches to Disability in Portugal: a Brief
Overview
Fernando Fontes
Introduction
According to Foucault (1996) cultures are made of ruptures, which means that they are
not rooted in historical vicious circles. Despite this idea of progress, I also believe
culture is not self-contained, as it does not exist in a void. Hence existent cultural
formations result from complex and overlapping processes, where elements from former
cultural formations play an important role alongside present contingencies. Therefore,
this historical continuum is the key for understanding change, as well as for identifying
large trends in ideas and beliefs. In the specific case of disability, this dialogical analysis
is crucial for understanding and deconstructing prevailing conceptions of disability.
Throughout history disabled people have been one of the most discriminated
against, excluded and oppressed groups, and the poverty linkage proves this (Coleridge,
1993; Beresford, 1996; Priestley, 2001; Turmusani, 2001; Zaidi and Burchardt, 2002).
Stone (2001) pushes this argument further by acknowledging the existence of a neverending cycle within which poverty produces impairment, which in a disabling society is
transformed into poverty. However, to stress this connection between disability and
economic deprivation and social exclusion is not claiming that the first is the cause and
the latter the result. Conversely, the deprivation and exclusion experienced by those with
any kind of impairment does not result from their impairment, but is due to the
psychological barriers and restrictions created by society. The experience of disablement
is thus constructed by society (UPIAS, 1976). This is precisely what has been suggested
by the social model of disability for the last twenty years.
As several studies have demonstrated (Barnes, 1997; Stiker, 1999), contemporary
oppressing views of disability can be traced back to the foundations of Western societies.
From Greek and Roman mythology to the Judaeo-Christian religions, from theatre and art
to literature, there are numerous examples of the representation of disability as
undesirable, sinful, impure, as tragedy and fatality, as well as charity and pity. These
visions are embedded in Western societies’ history and ideas, legitimising the further
exclusion of disabled people. To prevent the dominance of such biased notions of
disability, there is an urgent need to deconstruct those ideas, by exposing their basic
assumptions and consequent results, as well as by offering new emancipatory models of
disability.
This chapter examines specifically how perspectives of disability and disabled
people evolved in Portugal. It results from current research being conducted for a PhD
on issues of social citizenship and the development of the Disabled People’s Movement
in Portugal. Throughout this chapter, I will identify some of the values attached to
disability in Portugal, highlighting the social and political implications these constructed
values of disability have in shaping social policies in Portugal.
A Brief History of the Support Given to Disabled People in Portugal
Comparatively to other European countries, Portugal does not have a comprehensive
history of disability, which means that references to disabled people need to be found
under other research topics, namely under the topic of “assistance” or “public assistance”.
Moreover, any attempt to map it out needs to rely on the analysis of secondary data.
From the earliest days of Portugal as an independent kingdom (1143), there is
evidence that disabled people had to rely mainly on the existent charities, linked to the
Catholic Church, which provided assistance to all of those in need for public support
(Maia, 1985; Ferreira, 1990). These ancient charities (brotherhoods, confraternities,
shelters, hospitals, leprosy houses, ‘shops’) took different forms, depending on the local
established religious community or on their established goal. However, they all shared
some typical features, namely: their local scope, providing help for the locals and their
generic spectrum, providing assistance to people with diverse conditions (Ferreira, 1990).
This situation started to change by the end of the fifteenth century (Ferreira, 1990).
This was the result of an increasing involvement of the Crown in the regulation and in the
provision of public assistance. As a result, new hospitals were created all over the
country (the Hospital Termal
das Caldas da Rainha [1485], the Hospital Real de Todos-os-Santos, in Lisbon
[1491], and the Hospital do Espírito Santo, in Évora [1495]) and public assistance was
reformed. This reform was accomplished by the extinction of some old charities and
incorporation of others in a new type of charity – the Misericórdias. The first
Misericórdia, still in existence today, was created in 1498 in Lisbon by the Queen D.
Leonor (1458-1525) (Abreu, 2001).
Despite the fact that new charities were still targeting the economically deprived
population in general, what was new was the existence of specific services for disabled
people. These charities created home based support for those with incurable diseases
(called the ‘visited’ or the ‘listed cripple’) (Lopes, 1994). The support provided to
disabled people by the Misericórdias included free medicines, clothes, a place to live and
a monetary contribution (Lopes, 1994: 508).
During the eighteenth century, due to the amount of vagrants, the state started to
introduce measures to: separate the ‘deserving’ from the ‘undeserving’, i.e. the legitimate
beggars from the ‘non-impaired’ not willing to work, and to institutionalise vagrancy for
the first time. By a Decree of 1755, those vagrants considered able to work were
sentenced to forced labour. If the vagrants were found out of their home communities
they were sentenced to eviction. Those considered ‘invalid’ to work (including the
‘blind’), the ‘real’ poor, were licensed by the state to go begging in an orderly and
virtuous way (Lopes, 1994: 512). During this period other measures were taken,
noticeably the creation in 1760 of the Intendência-Geral da Polícia (Public Police) with
the control of vagrancy as one of its specific duties and the creation in 1780 by General
Chief of the Police (Pina Manique) of the Casa Pia in Lisbon. The Casa Pia was created
to collect and recover, by work, vagrants and beggars and to give education to the
orphans, but above all its creation represented the first step to the establishment of public
assistance run by the State (Lopes, 1994: 501).
The creation of these institutions and the implementation of acts targeting the
vagrants and the beggars may be read somewhat as an influence of the humanist and
enlightenment thought and its faith in human beings (Kant, 1798; Rousseau, 1913; Hume,
1965). This tendency was, however, counterweighted by the need to control the beggars
and to control deviance and deviant behaviours characteristic of this historic period in
Portugal (Maia, 1985; Lopes, 1994). These institutions and acts were similar to the
British workhouses and the Poor Laws implemented in England, where Marquês de
Pombal, the Portuguese Prime Minister at the
time (1750 – 1777), had been ambassador from 1738 to 1745. These institutions
were also created in the spirit of the Hôpital Général, created in Paris in 1656 by Luís
XIV, to incarcerate poor people and people with learning difficulties, as well as the Hôtel
des Invalides, also created in Paris in 1674 (Stiker, 1999: 98). The second half of the
eighteenth century thus marks the beginning of a new era in the treatment of poor and
disabled people, marked, for the French case, by the “…administrative repression in the
treatment of the poor…[which] entailed concentrating people with a view to establishing
order” (Stiker, 1999: 98).
The first half of the nineteenth century in Portugal, due to the French invasions and
the political upheavals, was absolutely catastrophic to the majority of the Portuguese
population. The deterioration of the living conditions increased dramatically the amount
of beggars in public spaces and the number of people requesting public assistance (Lopes,
1994). These facts pushed the Portuguese state, for the first time, to intervene directly
and in an organised way in the provision of public assistance and to assume a major role
in its provision. An example of this is the publication in 1835 of a Decree establishing
the General Board for Beneficence (Conselho Geral de Beneficiência). Again during this
period the State focused on two main actions (Carreira, 1996: 10). First, to repress and
extinguish vagrancy through the supply of charity to those who ‘deserved’ it; people with
impairments and those unable to work, such as the elderly, widows or children. Second,
to admonish those believed to be able to work, but relying on public assistance, and to
force them to work. To these two action strategies, I would add a third action, one which
can be characterised by the creation of specialised institutions mainly aimed at detaching
disabled people from the rest of society.
The nineteenth century in Portugal also witnessed the emergence of the first
specialised institutions for disabled people. The first was set up in Lisbon in 1823 and
was called The Institute for Deaf-Blind Children. This institute, created within the
structure of the existing Casa Pia of Lisbon, was not only an asylum but also a hospital
for deaf-blind children (Costa, 1981: 309). This institution was followed by several
others in the second half of the nineteenth century all over the country, such as the
Asylum for the Blind Nossa Senhora da Esperança created in Castelo de Vide in 1863; an
asylum for people who acquired an impairment through injury at work, set up in
Alcobaça in 1864 (Goodolphim, 1900: 67-72); the Hospital of Conde Ferreira created in
Oporto in 1883 for people with learning difficulties; the School Asylum for the Blind
António Feliciano de Castilho
set up in Lisbon in 1888; or the Institute for the Deaf José Rodrigues Araújo Porto
created in 1893 in Oporto.
The second half of the nineteenth century was also prolific in the emergence of
specialised psychiatric hospitals, most of them created to receive people who, until then,
lived in designated areas of large hospitals in Lisbon and Oporto. This is the case of the
Hospital for the Lunatics of Rilhafoles (currently Miguel Bombarda Psychiatric Hospital)
created in Lisbon in 1848 to receive those people that were at the Hospital of S. José
(Ferreira, 1990; Graça, 1996). This is also the case of the Hospital of Conde Ferreira
created in 1883 by the Misericórdia for people with learning difficulties who used to be
at the Hospital of Santo António in Oporto.
In the final years of the Monarchy (which ceased in 1910), there were several
specialised asylums, hospitals and institutes for disabled people. Most of these
institutions, apart from the recently created institutes, had no specific goals besides
incarcerating and separating disabled people from the mass of vagrants and, above all,
from the rest of society. Most of them were created by individuals and relied financially
on private funding and charity (Goodolphim, 1900).
As with the British case, where the “first chink in the wall came through the
medium of education” (Drake, 1999: 46), the first chink in Portugal came through the
creation in 1916 of the Medical-Pedagogic Institute. This innovative resource focused on
pedagogical goals rather than on incarceration, aiming to study and observe children with
learning difficulties in the Casa Pia of Lisbon (Costa, 1981). The establishment of a
dictatorship in Portugal in 1926 that lasted for almost fifty years (1926 - 1974) refrained,
however, the impacts of this important step. The emergence of new segregative
institutions with no pedagogical purpose was a reality in this period, targeting, mainly,
people with mental impairments. Examples are: the Hospital Nª Sr.ª da Saúde in Lisbon
created, in 1925 latterly called the Medical-Pedagogic Institute Condessa de Rilvas, or
the Institute Adolfo Coelho. During this period there was an increase in the number of
psychiatric hospitals, such as: the Hospital Júlio de Matos in Lisbon (1942), the Hospital
of Sobral Cid created in Coimbra (1945), the Psychiatric Hospital of Lorvão also created
in the Coimbra area (1959) and the Hospital Magalhães Lemos in Oporto (1960). The
creation of these institutions for the incarceration of people with mental impairments may
be located, I believe, within the spirit of eugenics, and of social control in vogue during
the Portuguese dictatorship (Bastos, 1997). At that time, mental impairment was closely
linked by those ruling, with delinquency
and vagrancy, as it can be seen in some writings of the time (see for example Mário
Simões dos Reis, 1940).
In a period more concerned with the control of minds (Pimentel, 2000) and with the
punishment of those considered to be different and thinking differently, the support given
to disabled people was almost non-existent. The responsibility of the state was, as it is
stated in the Statute of Social Assistance (Law number 1998, of 15/05/1944), to promote
the living conditions of poor people, although, as it stresses, public assistance should only
supplement the private initiative, meaning that state action should be directed towards the
coordination and facilitation of private assistance (Carreira, 1996). The public system
was, however, hardly supplemented by the private system of charities, since, as Hespanha
et al. (1997) recognise, the state exercised a powerful controlling activity over the
existing private charity organisations, limiting and making almost impossible their
activity. Due to the harsh situation faced by most of the Portuguese population, as well
as an openness in the regime and probably some international contacts, there was a boom
from the 1950s onwards in single-impairment organisations for disabled people formed
by families, mainly mothers, and professionals (Costa, 1981). Examples of these new
single-impairment charities are the Portuguese League of Motor Impaired (1956), the
Portuguese Association of Cerebral Palsy (1960), the Association of Parents and Friends
of Mongolic Children (1962) and the Portuguese Association for the Protection of
Autistic Children (1971) (Costa, 1981). According to Costa and Rodrigues (1999), this
emerging disability movement was also responsible for raising state awareness for the
needs of disabled people and their families. After the revolution (1974) this boom
continued with the creation of local branches of organisations all over the country and
with the emergence and mushrooming of education co-operatives for disabled children
(CERCIs).
Contrary to what happened in most of Europe, Portugal did not develop a Welfare
State until the fall of the dictatorship. After 1974, the development of an embryonic or
‘quasi Welfare State’ (Gough, 1996; Santos, 1999) and the recognition of the rights of
disabled people as human rights impacted greatly on the lives of disabled people. The
Portuguese ‘Welfare State’ has developed, however, unevenly for different sectors of the
population protected by different welfare-regimes with contrasting levels of generosity
(Ferrera, 1996; Santos, 1999; Hespanha, 2001). Due to the well-documented link
between disability and poverty, as stated earlier, disabled people in Portugal have been
supported mainly
by what is called a ‘System of Social Assistance’; a means tested system of social
solidarity meant to protect the poorest citizens unable to financially support themselves.
The level of protection offered by this scheme is, however, less generous than any of the
contributory systems, and is always subject to evaluation and scrutiny of the living
conditions of the applicants.
Another major feature of the last thirty-three years is the lack of global disability
policy in Portugal, capable of gathering and giving sense to the politics followed in the
different sectors concerning disability. On the contrary, the disability policies in Portugal
have been mainly sectarian, most of the time with no linkage between them. This fact
has resulted in the existence of several contradictory movements within disability policies
in Portugal which allowed the state to disregard its own acts (Santos, 1990). Plus, most
disability policies are mainly based on the principles of assistance rather than on the
recognition of the rights of disabled people.
As it is possible to envisage from the above, ‘disability’ and ‘disabled people’ as a
specific category is a modern creation, which is as recent as the nineteenth century in
Portugal. Evidence for this lies in several factors: the lack of specialised institutions for
the assistance of disabled people in Portugal before the nineteenth century; the fact that
before that time disabled people were mentioned among other groups of people entitled to
be assisted by generic institutions, such as those economically deprived, those with ill
health, widows and orphans; the fact that disabled people as a specific category for state
support emerged only in the nineteenth century; this was a period of great development
for medicine in Portugal after centuries of captivity of the inquisition (which ceased in
1821); this corresponds to the time of creation of large residential institutions for disabled
people.
As it was also demonstrated, this tendency for the categorisation of disabled people
started earlier in the fifteenth century, generating an increasing involvement of the state
in the regulation of access to social provision. Similar to what Deborah Stone (1984) has
described for the US, the strategy in Portugal seems to have been the creation of two
different and isolated systems of production and allocation of goods. This involved a
core system based on labour, for those who could work, and a second system based on
needs, for those considered unable to work. The access to this second system was,
however, conditioned. Initially this was done mainly by political criteria, based on laws
which defined those eligible for support. With the spread of new scientific ideas in
Portugal, especially in
medicine, access to support became defined by medical criteria and medical
professionals.
This process initiates the creation of disability as a category and of disabled people
as a category of people detached from other groups in Portuguese society which
continued throughout the twentieth century. It constituted what Stone (1984) would call
a process of administrative categorisation. This process of categorisation implied the
construction of ideas and meanings attached to disability, which I will explore in the next
section.
The Values Attached to Disability and Disabled People in Portugal
The exercise of eliciting the meanings attached to disability in a time span perspective
has its limitations, since it is deemed to rely on the testimonies of those people with a
powerful voice in each period, which was never the case with disabled people. However,
despite these limitations I believe this exercise is still a valid one, as long as it is used to
expose and deconstruct the ideas underpinning the exclusion and discrimination of
disabled people. My analysis will focus on the Portuguese state and society’s
representations of disability and of disabled people after 1974. In order to do this I have
considered the legal documents that emanated from the state after 1974 and included
results from thirty semi-structured interviews conducted in 2005 with parents of disabled
children (Fontes, 2006).
Portuguese State’s Representations of Disability
During the Portuguese dictatorship there were almost no public concerns towards
disabled people or other excluded groups. The legal documents where disabled people
were referred to used words such as ‘abnormal’, ‘incapable’ or ‘diminished’ (see for
example Decree number 485/73, of 27/09/1973). This situation started to change after
1974, when democracy was re-established and the Welfare State started to be developed.
An analysis of the legal documents produced by the Portuguese state after 1974 allowed
me to identify two pervasive visions of disability in the legal documents: what I call an
essentialist vision of disability and what I call a bio-social vision of disability. Let us
take a moment here to look at each one of them.
The essentialist vision, as I am using the concept, refers to those visions closely
linked with the ‘medical’ model which tends to attach disability to biological issues.
Within this vision, disability emerges as a disease and disabled people as dependent and
incapable. It emerges in several
documents where the legislator uses words such as: ‘incapable’, ‘inaptitude’ and
‘deformity’. In an Act from 1980, for example, which establishes an additional youth
benefit for children with impairments and young people (Law-decree number 170/80, of
29/05/1980), it reads:
The additional youth benefit for children and young people is attributed to those
people who are less than 24 years old…that due to an injury, a deformity or illness,
congenital or acquired, are included in any of the following criteria:…c) Have a
permanent reduction of their physical, motor, organic, sensorial or intellectual
capacity, that prevents him/her from providing his/her subsistence when reaching a
working age.
This vision is also pervasive in those legal documents establishing access criteria to
certain benefits and/or services dependent on a medical evaluation. Moreover, it is at the
root of much of the charity rehabilitational philosophy in many policies developed by the
Portuguese State and followed by much of the disability charities. It can be seen for
example in the creation in 1977 of the National Secretariat for Rehabilitation (Law
number 346/77, of 20/08/1977), later renamed National Secretariat for the Recovery and
Integration of People with Disabilities (1997). The links to medical terminology are
manifest.
By the end of the 1990s a new vision of disability emerges, based on the concepts
of inclusion and citizenship and on the idea of the rights of disabled people. I call this
vision bio-social, because, despite the use of the language of rights, the attention raised to
issues of environmental barriers and the embracement of efforts to promote the
integration of disabled people into the labour market, disability continues to be regarded
as an individual question, as a problem of that person and not of society to which the
latter needs to answer. According to David Hevey (cited in Priestley, 1999: 34), there are
two possible ways to portray disability: the first is through the representation of the
‘impaired body’ and the second is through the representation of the disabling barriers.
Hevey states that the cultural construction of disability has been dominated by the former
(the impaired body). This is also evident in the Portuguese case where the legislator has
been unable to look to disability as a social question only. Disability continues to be
addressed through the impaired body around which all the technical and political
attention is focused. What results from these policies and legal acts is an ‘embodiment’
of disability, the idea that the disadvantages experienced by disabled people result from
their impairment and not from the physical, social and cultural barriers that are disabling
to people.
An example of this situation is the maintenance of a separate chapter in the General
Law of the Education System to deal with the education of disabled children, which has
no articulation with the other chapters where the Portuguese education system is
established. This situation was created in 1986 when the first General Law on the
Education System (Law number 46/86, of 14/10/1986) was published and persists to the
present day. The current General Law (Law number 49/05, 30/08/2005) keeps the
education of disabled children in a separate section within the special types of education
(Subsection IV).
Another clear example of the image of disability disseminated by the state is the
one presented in a 2002 campaign for the prevention of road accidents carried out by one
governmental organisation (Direcção Geral de Viação – DGV) and another Portuguese
Non-Governmental Organisation (Prevenção Rodoviária Portuguesa – PRP). In the
poster of that campaign we can see a person in a wheelchair in a sober position over a
black background and it reads in white and red letters: “Just to remember: 50” (referring
to the speed limit in cities or villages) and further down “The faster you go, the slower
you get”. This campaign, apart from the intended shock, portrays a very specific image
of disability and of disabled people: firstly, the idea of disability as punishment, in this
case for the irresponsibility of car drivers, as it was in ancient times for other sinful
activities; secondly, the idea of disabled people as less active (“slower”) and more limited
in their activities; and, thirdly, the idea of disability as tragedy.
According to Oliver (1990), this idea of disability as tragedy, present in this
campaign, is an ideological construction of capitalism, it is not something new, it is only
a new form of disability assumed after the emergence of capitalism. Therefore the
current images of disability are the combination of an individualistic ideology typical of
all capitalist systems with the other peripheral ideologies of rehabilitation, medicalisation,
and personal tragedy. The confluence of these ideologies produced what we have today:
the dominance of medical and individual perspectives on disability that helped to push
disabled people towards segregation. These ideologies are thus the key to understanding
the construction of disability and the economic and social disadvantages associated with
impairment.
Portuguese Society’s Representations of Disability
In my analysis of thirty interviews carried out with parents of disabled children in
Portugal I could identify these same conceptions of disability. Firstly, the idea of
disability as tragedy, in the case of these families, it was
not a personal tragedy as most of the literature mentions, but a family tragedy.
‘Disability’ is described in a first moment as a shocking and painful experience for the
family. This conception has been grasped by psychology through the concept of
‘mourning’ used to describe the feelings of the families concerning the upbringing of a
disabled child. This concept, also culturally symbolic, directs us to the idea of death, in
this case the death of the wished child (the child without any impairment) and the
upbringing of the unwished child (the one with impairments). The idea of disability as
tragedy is closely linked to another way of portraying disability; the impaired body. The
construction of disabled people is thus based on impairments, on difficulties and deficits,
which became the image of the disabled person.
Also correlated to this oppressive idea is the way in which disability impacted on
the construction of disabled people’s humanity. As Paul Abberley (1987: 16) described,
these stereotyped and distorted ideas of disabled people restrict their full humanity. As it
can be seen in a selection of quotes from the interviews, this fact is persistent in the
discourses of the families. Firstly, when they talk about other disabled children:
I was in the children’s hospital for two months and a half and I saw in there…
Look, I can see that my son is disabled, but, I’m sorry, my son is disabled, but there
are children much more disabled than mine. And it is through these thoughts that I
can build up some hope…There are people much more disabled, much more!
(Family 12).
I was always very sensitive to these things [disability], however when I got in that
centre [for people with cerebral palsy]… Let’s put it this way, we could see one
here and another one there, but not so many people together. When I arrived there
Dr. XXXX told me not to be scared. And I thanked God for the situation of my
child. Because there are children in worse conditions. My child is very normal
compared to most children I see in there (Family 18).
I see them [disabled people] there in the Centre [for people with cerebral palsy] and
I think to myself – ‘What is this doing in the world?’, because there are even those
that have those things to handle their heads, because they cannot do it, they do not
talk, they do not eat by their own hand…They have got nappies on…which is very
sad. I feel very sad for those things. And if I’m now a bit more comfortable with
my son’s disease it was because I saw children in much worse conditions (Family
28).
The logic of comparison with other disabled children is used by families as a
strategy to attenuate the ‘disability’ of their children. Secondly, in the idea that disability
restricts the person as a human being, an idea captured when families talked about how
they see the future of their children:
I won’t say that my son will be a one hundred per cent top child, probably he won’t
be. But I hope that he may at least create his own mechanisms and his own
defences, his own mechanisms to be a self-sufficient child and that in the future he
may take care of his own life without needing anyone to do it (Family 13).
I used to say that there are people in worse conditions than my son…And, to be
honest, I prefer him to be deaf than to be blind! Because deaf, I think that …blind
is more complicated to walk on the streets alone. There is a blind child in the same
nursery where my son is. And things are more difficult. And I think that my son
can become a man someday. And that’s what I used to say, he can turn into a great
man! This [the impairment] won’t prevent him from it. He is very bright (Family
14).
These conceptions of disability are accompanied by two interlinked but antagonistic
ideas: firstly, the idea of pity and, secondly, the idea of shame.
The idea of pity, present in much of the interviewees’ discourses, encapsulates the
feelings of compassion and mercy towards disabled people. In public discourses it
emerges frequently in words such as “poor person!”. This pitiful discourse, based on the
idea that people are not responsible for being impaired, that they were just unfortunate,
has been the basis of much of Christian charity and of public charity (Stiker, 1999).
The idea of shame, that translates into a feeling of disability as something impure,
something resulting from sinful practices, has its origins in the past that were perpetuated
by Christianity in the Bible (1995) (see, for instance: Leviticus and Deuteronomy). This
is well documented in my interviews. Firstly, in the shame the parents feel for giving
birth to a disabled child:
It was not fear, it was more shame… It was the anguish of having a different child.
How could I give birth to something like that! I was blaming myself for the
happening (Family 1).
It is very odd what I’m going to say, but if I had detected the loss of hearing in my
first [son], I would have never given birth to the second. Only if we, me and my
husband, were completely irresponsible would we opt to give birth to a third
child…It
would be another deaf person that I would bring to the face of the earth (Family 2).
Secondly, it is well documented in the attitude of hiding the impairment of the child from
the rest of the family and from the people in their local community.
One day my husband arrived home and said [to his mother]: ‘From now on, either
you stop with those kind of talks and keep your mouth shut, or you’ll be forbidden
to see your grandson! The next time you start with those talks or the next person
we know you’ve told about it, you’ll be forbidden to see your grandson!’ (Family
7).
I just say that my son has got developmental problems. I don’t give any other
explanations…I don’t give them the chance to ask anything else, I stop the
conversations at that point! (Family 17).
Conclusion
To conclude, I suggest that the Portuguese State does not fully respect disabled people.
That would only be possible through the embracement of the idea of disability as a social
fact, as a problem of society and not of the individual, and by taking on board the direct
consequences of this fact. I believe that this has been made easier by the adoption and
signature of the UN Convention on the Rights of Persons with Disabilities in 2006.
As I have tried to highlight, the persistence of specific ideas about disability have
had and continue to have serious implications in the ways disability policies have been
conducted and, more importantly, in the lives and the futures of Portuguese disabled
people. Firstly, by embodying disability and defining it as a medical problem, it assumes
the existence of a corresponding individual and medical solution. Hence, disabled
people’s real or accredited needs, regarded as special, become defined, controlled and
managed by disability ‘specialists’ and ‘professionals’; the technicians (Barnes et al.,
2000). Disabled people become involved/ entrapped in a non-symmetrical power
relation. As a result, disabled people are put into a dependency situation and portrayed as
passive towards their own lives and problem-solving, prevented from accessing the
labour market and from having a so called ‘normal’ life. Secondly, by keeping disability
at the individual level, these views thwart its politicisation. This element is of particular
interest and is currently being investigated further in my current research. This looks at
the way that the Portuguese Welfare State has addressed the rights of disabled people, as
well as the role played by the
Portuguese Disabled People’s Movement in shaping and influencing social policies.
From this analysis it is possible to conclude that disabled people in Portugal are still
experiencing several, overlapping processes of exclusion and oppression. These
phenomena are anchored, I believe, not only in the prevalence of a strong JudaeoChristian ideology, but also in the low education levels of the population, the dominance
of medical professionals in the area of disability and the low level of politicisation of
disability in Portugal.
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CHAPTER 7
The Suffering Body in the Cultural Representations of Disability: The
Anguish of Corporal Transgression
Bruno Martins
Introduction
Grounded on a long ethnographic account of the experiences of blind people in Portugal
within the Portuguese National Association of the Blind (ACAPO), my research has been
devoted to exploring how blindness is culturally represented and experienced. On the
one hand, the effort is to understand the processes through which the hegemonic cultural
values towards blindness and disability are produced and reproduced. On the other hand,
the effort is to explore how those dominant values relate with the experiences of blind
people, those who know blindness and its implications in the flesh.
Blindness, Representation and Experience
Focusing on blindness I analytically embraced a condition that strikingly recollects the
disabling dominant values in our society. Blindness figures among the impairments that
are more vigorously enclosed within the ideas of tragedy and incapacity, ideas that are
crucial to the social production of disability as a particular form of social oppression.
Actually, the tragic perspectives socially associated with blindness constitute one of the
reasons that led me to privilege the exploration of “blindness”, in spite of perspectives
that claim for a political genealogy of categorical designations that discards “blindness”
on behalf of “visual impairment” (for example, see Bolt, 2005). In an analysis that
strongly addresses cultural representations with regard to the production of hegemony,
blindness – rich as it is in historical and symbolic depictions in western culture (see
Derrida, 1993) –
refers to a more precise collection of values and cultural conceptions than, for instance,
visual impairment. Furthermore it is important to note that, contrary to blindness, visual
impairment is a category that may lack readily analogous expressions in other languages.
My research is intellectually and politically engaged with the insights brought by
the social model of disability. However, in this paper I would like to stress political and
cultural dimensions, which are often approached with reluctance within Disability
Studies, particularly within an “emancipatory disability research perspective” (Oliver,
1992: 111). By this I am stressing elements where the analysis of a disabling society
crosses with questions related to phenomenology and embodied experience.
Certain experiences with a strong corporal dimension (such as the amputation of a
limb, the loss of a sensorial ability or the onset of an impairment) carry strong
implications for personal histories. Those events imply an ontological violence that goes
further than the phenomenological and biological strains involved in the transformation
of the body: the cultural descriptions available permeate that transformation and that
violence. Phenomenological experience is enmeshed with the cultural representations of
that experience. But, on the other hand, analytical attention to bodily experience
blatantly de-authorises a naïve constructivism, which, while fighting the power of modern
essentialist ideologies to derive social hierarchies from biological differences, has
neglected, often to the limit, dimensions of existence where the lived body assumes
irredeemable centrality. Grounded on a long ethnographic account of the experiences of
blind people in Portugal, these questions, contending with ambivalent socio-political
implications, will be summoned through the notion of the “anguish of corporal
transgression”.
Before going further in the analysis of some elements where embodied experience
and cultural representations of blindness are called to the fore, I shall provide a general
overview of my research. My frame of analysis lays in the idea that blindness, as other
impairments, is socially portrayed by contingent cultural constructions; hegemonic
constructions that, rather than being sustained by the experiences of disabled people, are
based on ancient symbolic heritages and echoes; on the biomedical modern episteme that
invented disability as a pathological deviation from normality; and on the contemporary
relations of power that sustain a disabling society. In my research the deconstruction of a
medicalised modern conception that hegemonically pervades notions of blindness and
disability is sought through three different perspectives:
1) A socio-political approach. Through this I address the alternative conceptions of
disability brought by the social movements of disabled people. Particular attention is
given to the social model of disability and to the oppositional perspective it offers by
reconceptualising disability as a particular form of social oppression. With this
perspective, in which the naturalisation of exclusion is strongly rejected, I wish to
conflate theoretical work within the social model with an empirical analysis to allow me
to explore the political endeavours of the organisations of disabled people in Portugal. I
try to grasp the possibilities and constraints for a politicisation of disability in a country
that in terms of its civil society is broadly characterised by a lack of social movements
(Santos, 1994).
2) A sociocultural approach. Here I consider the Western history of blindness. Not
only to grasp the meanings and symbolic echoes attached to blindness across time, but
also to address the modern objectification of blindness as an impairment and, therefore,
its naturalisation as a particular form of pathology under the “hegemony of normalcy”
(Davis, 1995). Crucially, this western naturalisation of disability is also challenged in the
ethnographic endeavour I undertook in 2005 in Mozambique, Eastern Africa. There, I
explored cultural readings in which the Western categories about disability and disease
give way to other aetiologies and meanings attached to corporal difference. In those
apprehensions, the meaning of blindness (as the meaning of other perceived bodily
differences) always depends on the social relations that are seen to be the underlying
cause of it. The experiences of disease and impairment are invariably understood as the
outcome of some kind of social conflict that is tackled through the resource to sorcery,
activity which is taken to be the direct cause of damage to somebody’s integrity. So, in
Mozambique, the meaning, implications and social perceptions of impairments crucially
depends on a previous chain of events where sorcery and social relations are made
decisive - social relations in which ghosts are an important part: they intervene in the
world of the living, offering or withdrawing protection, acting in revenge or punishment.
This ethnography reflected a more profound epistemic persuasion: the meaning of bodily
difference always depends on the cultural mediations through which it becomes socially
intelligible (Ingstad and Whyte, 1995; Butler, 1993). Cultural representations and forms
of social organisation arise as decisive in defining possibilities and expectations for
people with impairments. Therefore, in my perspective, this anthropological
denaturalisation of disability through ethnographies in non-western settings appears as an
important contribution to the political
perspectives that fight the dominance of modern medical models on behalf of a
socio-political outlook.
3) An experiential approach. From this angle I confront the hegemonic values
surrounding blindness with the personal experiences of blind people. This challenge was
undertaken through a collection of life stories of blind people and through a longstanding
ethnographic account of their daily experiences in Portugal. I will focus precisely on this
last dimension: the relation between the experiences of blind people and the dominant
cultural accounts of blindness.
The Personal Tragedy Narrative
In our societies the prevailing values about disability are largely not informed by disabled
people’s experiences and voices. But, in reverse, such values strongly inform those
experiences in oppressive terms. The dominant historical and biomedical values
converge with contemporary social dynamics to incarcerate the experience of disabled
people in the ideas of tragedy and incapacity. Those constructions reiterate a ‘personal
tragedy theory’ (Oliver, 1990) as the dominant socio-cultural grammar to address the
experience of disability. I borrow from Michael Oliver the idea of a ‘personal tragedy
theory’ to elect the personal tragedy narrative as a central concept (a cultural grandnarrative) to understand how disabled people’s lives are continually confronted with
dominant fatalist prejudices that enclose their experiences in disgrace and incapacity. I
argue that in the cultural hegemonic representations about blindness this condition is
strongly associated with the concepts of tragedy, misfortune and incapacity.
This conceptualisation of blindness is well expressed in our cultural artefacts. We
can take, for example, the movie Scent of a Woman (1992), directed by Martin Brest (a
remake of Dino Risi’s Profumo di donna - from 1974). In this important display of the
issue of blindness in the media, Al Pacino plays the role of Frank Slade, an ex-military
soldier that had been blinded in an accidental explosion of a grenade. The central
dialogue of the film occurs when Frank Slade is encountered preparing for his suicide.
Charlie, the young man that assisted him in a trip to Boston, tries to stop him and says at
a certain moment: “go on with your life”. To this Frank Slade replies: “what life? I’ve
got no life. I’m here in the darkness”. The response yelled by Al Pacino can obviously
convey the suffering felt by someone recently blinded in an accident. However, what I
would rather emphasise is how this enunciation, in such an important evocation of
blindness, largely reflects the terms by which this condition is socially
understood: a disgrace that challenges the value of life. These same ideas are
present in the book Blindness (Saramago, 1995) by the Portuguese Nobel prize winning
author, José Saramago. In that novel the sudden blindness of an entire population
emerges as a rich metaphor to symbolize human disgrace, ignorance and alienation. That
profusion of meanings and metaphors is brilliantly captured by one of Saramago’s (1995:
204) characters: “blindness is also this: to live in a world where hope is gone”. In fact, in
the novel Blindness, the experiences of blind persons are virtually absent; I would say
that they were replaced by the dominant cultural values and symbolic echoes involving
this condition in the West.
In my perspective, this same replacement is what happens in contemporary social
life, where the lives and reflections of disabled people are systematically subsumed by
the dominant constructions of their experience. In blatant contrast with the dominant
values, engagement with the experiences of disabled persons clearly shows how their
lives and reflections tend to reject the notions of misfortune and incapacity. In fact, in
my fieldwork with blind people, their positive views about blindness became quite
evident, as their will to face the many obstacles posed to their self-accomplishment.
The Anguish of Corporal Transgression
As I started researching in the field of disability, I soon engaged with the perspectives
brought about by the social model of disability. This model was created during the 1970s
in the British context by the Union of the Physically Impaired Against Segregation
(UPIAS), whose Fundamental Principles of Disability (1976) became a cornerstone
document for the social movement and for Disability Studies. The insights they raised
were later developed by Oliver (1990), constituting a precious theoretical corpus for my
outlook of contemporary conditions of disablement. Contrary to some recent debates
(see, for example, Shakespeare, 2006), my identification with the social model has never
called for agonistic options in terms of my engagement with the different research
approaches and theoretical sensitivities. This is so much so since I subscribe to most of
the poststructuralist and feminist contributions to critical theory. Also, I have been
interested in exploring how some personal and phenomenological dimensions of
experience relate with the cultural representations of disability. However, in espousing
those theoretical influences and research aims, I firmly disagree with the claim that they
are irreconcilable with (or discard) the social model.
As such, in the same manner as I follow Judith Butler’s (1993: xi) dismissal of a
“prediscursive sex”, and the consequent refusal of the sex/gender dichotomy, I believe
that the distinction established by the social model between disability and impairment
overlooks how impairment (its experiences and conceptions) is always permeated by
particular social contexts; in short, that there is no prediscursive impairment and that even
what counts as impairment is open to discussion. Moreover, as it might be trivial to say,
the social model is not particularly interested in addressing the ‘impairment effects’
(Thomas, 1999), that is, the personal experiences of suffering and vulnerability more
directly related to corporal conditions, and less dependent on social organisation.
However, in my opinion, those claims can only be seen to be in conflict with the
social model if we take it to be what it is not. The social model is not a comprehensive
theory of disability, but an oppositional political construction. It emerged to fight the
hegemony of a ‘medical’ model that naturalises and individualises the conditions of
exclusion endured by disabled people. In that sense I am comfortable with the pragmatic
circumscription of the model offered by Oliver (2004: 11) that “the social model of
disability is a practical tool, not a theory, an idea or a concept”. In fact, it is important to
understand, as Ernesto Laclau does (1996), that any project of emancipation is enmeshed
in a particular history; therefore political action is always in contingent oppositional
relation with identified structures of oppression. Through this perspective, the political
empowerment envisaged by the social model cannot be discarded by criticisms that
conspicuously fail to capture its obvious oppositional nature. Intellectual sophistication
and attention to complexity cannot foreclose thought from engaging with oppositional
political constructions, which are often dualistic. On the other hand:
it is important to resist that theoretical gesture of pathos in which exclusions are
simply affirmed as sad necessities of signification (Butler, 1993: 53).
This implies that to use the social model is not to ignore approaches that explore the
plurality of dimensions that mark disabled people’s experiences.
While the most dramatic sociological insights have led us to the general
identification of positive and empowering perspectives on blindness, as to the recognition
of the disabling cultural values, those assertions can run the risk of erasing other
experiential questions. I am referring particularly to experiences of suffering and
privation more directly associated with the
corporal fact of blindness, that is: phenomenological experiences of emotional and
bodily suffering that we fail to grasp from the perspective of social constructions and
impediments.
This dimension of personal suffering, eminently corporal, hardly captured via
exclusive socio-political explorations, I call the anguish of corporal transgression. The
anguish of corporal transgression refers to the vulnerability in the existence given by a
body that fails us, that transgresses our references in existence, our references in life.
Understood as such, the anguish of corporal transgression permits us to consider
dimensions of pain, suffering and existential anxiety where, against the conventional
negligence, body and emotions acquire a noble status in social and anthropological
reflections. In my research on blind people the centrality of the anguish of corporal
transgression is allowed to capture two different phenomenological sets of experience:
on one level, experiences of personal suffering, the experiences of blind persons who face
in some moment of their lives a gradual or sudden loss of vision; on another level,
imaginative existential anxieties towards impairment, the existential and corporal
anxieties that result from the way blindness is construed through the perspective of bodies
that can see. Trying to follow these paths, I became increasingly aware of the importance
of recognising embodied experience as an important dimension. This is an emerging area
of enquiry within the social sciences, traditionally uncomfortable in the exploration of
such dimensions of experience.
Valuing the embodied dimension of human experience invites us to grasp the
consequences of the fact that bodies are not only objectified with cultural meanings: they
are also the ontological condition for “being in the world” (Heidegger 1962). It is
through our bodies that we get access to the world and to others. Bodies feel pain,
pleasure, endure sickness and violence, and, as Judith Butler (1993: xi) affirms, this
cannot be demobilised as mere representation. So, I underline the words of Bryan Turner
(1992: 41) when he sustains that:
To believe that the questions of representation are the only legitimate or interesting
scientific questions is to adopt a position of idealism towards the body.
Returning to the anguish of corporal transgression to address it in the first
dimension we mentioned – the experiences of blind persons – we are called to explore the
experiences of suffering phenomenologically linked to blindness. I consider that this
approach denies the idealism that could result from an exclusive socio-political analysis
of what is implicated in the
experience of blindness. In this I follow Susan Wendell (1996: 42) in recognising
that:
many disabled people’s relationships to their bodies involve elements of struggle
that perhaps can’t be eliminated, perhaps not even mitigated by social
arrangements.
In fact, as the life-histories and some experiences from my fieldwork showed, for
somebody who can use vision, its loss can be received as a catastrophic event where the
meaning of blindness and the meaning of life often intermingle, where the ideas of
tragedy and emotional disruptions often arise. This ethnographic evidence is well
expressed by John Swain and Sally French (2000: 573):
To become visually impaired, for instance, may be a personal tragedy for a sighted
person whose life is based around being sighted, who lacks knowledge of the
experiences of people with visual impairments, whose identity is founded on being
sighted, and who has been subjected to the personal tragedy model of visual
impairment.
This escape from a disembodied idealism is not a restatement of the personal tragedy
narrative, far from it. In the stories and lives I approached, the sufferings more directly
associated to the corporal fact of blindness are often absent. In fact, in the lives of
persons that were born blind or that went blind through a slow descent of many years, as
with some pathologies leading to blindness, the loss or disruption of references makes,
existentially, little or no sense. The anguish of corporal transgression emerges essentially
in the narratives of sudden, fast and unexpected loss of vision. It is in those stories that
we find experiences of strong emotional distress stemming from questions that are not
addressed by the social oppression perspective.
Even so, in those stories revealing the harsh suffering and mourning periods that
may follow the loss of vision, we become familiar with the human ability for personal
reconstruction. What is ironic is to perceive how the will to live in new terms, with new
sensorial references in the world, has often to confront the fatalist values that enclose the
experience of blindness. In that irony, what turns out to be tragic is this: someone having
to live constrained by the values he strived to overcome. So, the focus on the
transgression imposed by a body that fails and undermines references that ‘organise’
forms of ‘being-in-the-world’ is far from reasserting the naturalization of incapacity and
misfortune. What the exploration of the experiential worlds relating to the corporal
transgression does assert is the
density of experiences that are at once emotional, corporal and social. In my work
this approach helped to apprehend and value how individuals struggle, endure, suffer or
cope with experiences of radical disruption in their sensorial relation with the world.
Therefore, in addressing embodied experience and correlating experiences of suffering I
stand close to Arthur Kleinman (1992: 191) who affirms:
the challenge is to describe the processual elaboration of the undergoing, the
enduring, the bearing of pain (or loss or other tribulation) in the vital flow of
intersubjective engagements in a particular local world.
Addressing personal bodily experiences through the ideas of anguish and
transgression implies, first of all the danger that the central sociological insights of social
oppression and stigma will efface subjective experiences of suffering. As a concept, the
anguish of corporal transgression sustains the centrality of bodily and emotional
experiences for the meaning of life and for the references through which the world gains
sense. This idea is operative in our trivial experiences and it gains increased evidence
when addressing borderline experiences; experiences where disruptive events
dramatically show how life can peril its foundations through the phenomenogical body.
In my work this was particularly obvious in the narratives of sudden blindness. In such
cases, the strongest enunciation conveyed the confession of wishing to be dead or of an
envisaged suicide.
So the anguish of corporal transgression captures and values subjective bodily
experiences of loss and vulnerability as much as it sustains how our sense of life, of
‘being-in-the-world’, is gained ─ and therefore may be lost ─ through our bodily
references in existence. However, if detached from the socio-political conditions, this
socio-anthropological attention to the pitfalls of personal bodily experience could run the
risk of confirming the dominant individualist perspectives on disability. Therefore, my
support for a comprehensive perspective on the local ‘worlds of experience’ (via anguish
of corporal transgression) is inseparable from a politically informed stance. The risk of
losing touch with the socio-political conditions of oppression is well epitomised in
Oliver’s (1996: 5) contention that:
There is a danger in emphasising the personal at the expense of the political because
most of the world still thinks of disability as an individual, intensely personal
problem. And many of those who once made a good living espousing this view
would be only too glad to come out of the woodwork and say that they were right
all along.
Imagining Blindness, Representing Disability
In a different perspective – through imaginative existential anxieties towards impairment
– I want to emphasise how the centrality given to the anguish of corporal transgression,
with its emotional and corporal vectors, can help us to understand more about the
dominant meanings socially inculcated in blindness.
From my research I want to argue that the tragedy associated with blindness owes
significantly to the way people use their bodies to imagine: “how would it be if I was
blind?”. This epistemological move, away from the modern consecration of a
disembodied positive knowledge, is informed by the idea that:
there is no Cartesian dualistic person, with a mind separate from and independent of
the body, sharing exactly the same transcendent reason with everyone else (Lakoff
and Johnson, 1999: 5).
Rather, I want to consider bodies that think, situated bodies that produce knowledge and
culture through emotions and visceral anxieties. Although historically neglected in social
sciences, the significance given to embodied experience and embodied knowledge has
gained relevance in recent times. In fact, an important contribution may be found in
recent works that have emerged, strongly influenced by Maurice Merleau-Ponty’s (1962:
82) Phenomenology of Perception:
The body is the vehicle of being in the world, and having a body is, for a living
creature, to be intervolved in a definite environment, to identify oneself with certain
projects and to be continually committed to them.
Merleau-Ponty’s (1962) phenomenological stance constitutes a crucial call to argue for
the embodied dimension of experience as for the idea of a “knowing body”:
In so far as, when I reflect on the essence of subjectivity, I found it bound up with
that of the body and that of the world, and because the subject that I am, when taken
concretely, is inseparable from this body and this word. The ontological world and
body which we find at the core of the subject are not the world or body as idea, but
on the one hand the world itself contracted into a comprehensive grasp, and on the
other the body itself as a knowing body (p.82)
Following this line of thought, relevance should be given to authors like Thomas Csordas
(1990, 1994a, 1994b), who brought to anthropology the
phenomenological heritage of Merleau-Ponty (1962), or to George Lakoff and Mark
Johnson (1999), who argued the importance of body and emotions in the realm of
cognition.
When I started my fieldwork among blind persons an interesting event took place. I
was in a holiday camp working as a volunteer for the Portuguese National Association of
the Blind. During the first night my sleep was disturbed by a nightmare. I woke with an
intense sensation of angst: I dreamt that I had become blind. This episode is
representative of my initial anxious response towards the spectre of blindness in my own
body. From there on, due to an increasing familiarity with blind people and their life
experiences, I gradually lost that initial preconception, revealed in the dream, about the
terrible tragedy blindness would be. However, I gradually came to comprehend the
crucial importance occupied by personal anxieties in the consecration of a personal
tragedy theory as the dominant social narrative about blindness.
In fact, vision tends to be a central sense for someone who can use it: in the
performance of activities and in the conception of the world. As a consequence, the
corporal imagining of blindness from a body that lives visually tends to offer the idea of
sensorial prison and incapacity. So, the anguish of corporal transgression is not only
something experienced by someone who goes blind: that transgression is also perceived
by means of the emphatic corporal projections through which blindness is imagined. I
sustain that the importance assumed by the anguish of corporal transgression in the
representations of blindness is not separable from a context where its symbolic historical
heritages could not be more unfavourable and where the experiences and voices of
disabled people are steadily silenced.
To defend the relevance of the anguish of corporal transgression is to defend the
creative possibilities for meaning resulting from the emphatic imagination of a disruption.
In fact, as Lakoff and Johnson (1999: 565) sustain, we constantly use imaginative
projections to capture others’ experiences:
A major function of the embodied mind is empathic. From birth we have the
capacity to imitate others, to vividly imagine being another person, doing what that
person does, experiencing what that person experiences. The capacity for
imaginative projection is a vital cognitive faculty. Experientially, it is a form of
“transcendence.” Through it, one can experience something akin to “getting out of
our bodies” ─ yet it is very much a bodily
capacity…There is nothing mystical about it. It’s what we do when we imitate.
Yet this most common of experiences is a form of “transcendence”, a form of being
in the other.
The role assumed by the anxious imaginations of blindness emerged throughout research:
in histories told to me by blind people and in the observation of the responses other
people have when they somehow enter in contact with them: the “mixed encounters” that
Erving Goffman (1963) talked about. Also, talking about my work with friends and
colleagues I frequently heard people reflecting on blindness in terms that usually reflect
their emotional relation with the spectre of that condition.
These imaginations not only produce personal anxieties towards blindness, they are
also mobilized as a way to enter the reality of blind people. This emphatic identification
with blindness is analogous to Lindsay French’s (1994) reflections on the social
responses produced towards the amputees she studied in a refugee camp in the ThaiCambodia border. After analysing the stigmatisation produced by the values of
Buddhism Theravada – particularly the ideas of karma and reincarnation – French (1994)
points, in an instructive intersection of social and phenomenological approaches, to the
visceral meanings enmeshed in a social reality emphatically marked by amputation as
consequence of landmines:
We respond viscerally to the spectre of amputation: it challenges our own sense of
bodily integrity, and conjures up the nightmares of our own dismemberment. We
feel an instinctive sympathetic identification with the amputee by virtue of our own
embodied being, but our identification frightens us; thus we are drawn toward and
repelled by amputees simultaneously, both feeling and afraid to feel that we are (or
could be) “just like them” (pp.73-74)
French wisely recalls, however, that the identification with the body of the other sustains
the illusion that it is possible to empathically reach the experience of the other. This
identification is inevitably erroneous and partial because we are always in a different
structural position towards other bodily circumstances. I argue that this erroneous
empathic identification is crucial to understand the detachment between the dominant
representations of blindness and its embodied experiences, particularly in the centrality
occupied by the ‘nightmares of our own dismemberment’. As John Swain and Sally
French (2000: 573) argue:
The problem for disabled people is that the tragedy model of disability and
impairment is not only applied by non-disabled people to themselves, it is
extrapolated and applied to disabled people.
The crucial question is that such a projective imagination of blindness allows an
apprehension of the eventual impact of a sudden loss of vision, but fails to understand
how someone’s life can be reconstructed in new empowered terms without vision, fails to
comprehend the adaptation allowed by a form of blindness that comes gradually through
the course of several years, and fails to conceive the world without loss of someone that
was born blind. What is produced is an empathic identification, partial and erroneous.
The existential disruption it elicits and exports to the social meanings attached to
blindness takes part in the re-production of its prevailing cultural representations in a way
that fails to do justice to the complex experiences of blind persons. In that sense, the
powerful enclosing of experience produced by the narrative of personal tragedy
continually restates its premises.
Conclusion
In my view, the allegation that the anguish of corporal transgression is centred on the
personal experiences of impairment in a psychological fashion would hardly be
sustainable. While it is true that this concept is presented as a productive one to
apprehend experiences of pain and suffering that sometimes are a part of the local worlds
of disability, it also aims to address how hegemonic disabling values are reproduced from
the personal visceral anxieties of the “able-bodied” towards disabled people. However, it
is important to stress that the cultural role played by those anxieties is not understandable
separately from their congruence with the dominant tragic views socially construed of
disability, or without taking into account a historical reality in which disabled people’s
voices and experiences have been steadily silenced. Within this dynamic frame the
narrative of personal tragedy keeps functioning as a hegemonic structure that guards the
disabling status quo from urgent social transformations and from a wider politicisation of
disabled people’s lives.
Thus, I would argue that the cultural narratives through which disabled people’s
experiences are perceived appear strongly attached to the personal anxieties projected
from an ‘able-bodied world’. With its specificities, the analysis here undertaken over the
representations of blindness retains a metonymic value to capture how the anguish of
corporal transgression partakes in the way other impairments are lived and represented.
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CHAPTER 8
The Significance of Studying Disabled International Students’
Experiences in UK Universities
Armineh Soorenian
Introduction
The research discussed in this chapter has been examining the relevance of inclusive
educational practices within UK universities with reference to disabled international
students’ experiences. The lack of this group’s voices from most of the literature
reviewed thus far highlights the importance of an extensive study in this area. Such a
study can then provide a crucial up-to-date snapshot of disabled international students’
experiences to facilitate meaningful theoretical and policy insights. The impetus for the
investigation discussed here stems from three related factors. The first is based on my
personal experience of physical, funding and other barriers encountered whilst studying
at English universities over the last eight years. The second is the desire to have a
positive impact on disabled international students’ educational life. The third relates to
an acute shortage of literature on both disabled international students’ experiences, and
on the application of policies for their inclusion whilst studying in the UK. This research
is therefore timely and appropriate since the number of disabled international students
studying in the UK continues to grow.
Background
Conventionally in the educational system, an assumption of the ‘normal’ appears to have
underpinned the construction and provision of education. Underlying selective structures,
based on ability and class membership (Ball et al., 2002), have created and perpetuated
inequalities (Archer, 2003). Entering any education system has traditionally been based
on the selection
of the intellectually able, gifted or ‘elite’(McDonald, 1996: 128), and the exclusion of
those deemed to be educationally incompetent (Tomlinson, 1982; Wolfendale, 1996).
Therefore, conventional systems have been geared towards serving the needs of those
students perceived to be ‘normal’, with the assumption that such educational institutions
as universities were not the place for disabled students, rather for “a narrow group of
socially advantaged students in the richest parts of the world” (Riddell et al., 2005: 11).
However, data provided by the Higher Education Statistical Agency (HESA) and Skill:
the National Bureau for Students with Disabilities show that from the academic year
2001/02 to 2004/05, there was a 37.02 per cent increase in the number of disabled
domestic students attending Higher Education (HE). This growth can be partly attributed
to the development of policies and provision for disabled students through the Disability
Discrimination Act (DDA) in 1995 (Hurst, 1995), the addition of Part 4 - the Special
Educational Needs and Disability Act (SENDA) in 2001, with further adjustments in
2005, and indeed the Disability Equality Duty (DED) scheme, introduced by the
Disability Rights Commission (DRC) in 2005.
The recent widening participation policies adopted by the Labour government to
accommodate diversity within the student population (by including non-traditional and
under-represented groups), may also have contributed to the increased numbers of
disabled domestic students at university (Hurst, 1996; Tinklin et al., 2002; Brown and
Simpson, 2004; Riddell et al., 2005). It can also be argued that access to funds such as
the Disabled Students’ Allowance (DSA), Access Funds, Discretionary Awards and
Social Security Benefits to help with impairment-related costs has made the transition of
disabled domestic students from Further Education (FE) to mainstream HE somewhat
smoother (Hurst, 1996; 1999). Additionally, most universities now offer a range of
support services such as non-medical helpers to provide disabled students with academic,
social and domestic assistance, largely referred to as Personal Assistance (PA) schemes
(Sheard, 2006).
These examples suggest a positive move towards more inclusive educational
practices based on the social interpretation of disability in education. This
interpretation/model is a concerted shift away from an emphasis on an individual’s
impairments as the cause of disability to the ways in which physical, cultural and social
environments exclude or disadvantage disabled people (Oliver, 1992; Finkelstein, 1994;
Walker, 1995; Shakespeare, 1997; Barnes, 2001). In an educational context, the social
model recognises various social, environmental and teaching barriers as obstructing
disabled students’ progress, and generally advocates for barrier removal (Pfeiffer, 2002),
rather than holding individual disabled students (as a direct result of their impairments),
responsible for their failure to access education (Riddell et al., 2005). Despite this recent
progress in disabled students’ access to education, research conducted by the DRC (2002)
into young disabled adults’ lives found that 30 per cent of those who had not progressed
onto FE/HE felt they were prevented from doing so for a reason relating to their
impairment. This indicates that the research participants, and indeed the relevant
colleges/universities, may have considered impairment as a major factor for exclusion
from FE/HE, rather than acknowledging the possible external disabling barriers present in
these institutions.
Disabled Domestic Students
Numerous studies (Konur, 2000; Beauchamp-Pryor, 2004; Brown and Simpson, 2004;
Tozer, 2006) are critical of HE institutions and related organisations for the limited
access, impairment-related support and relevant funding options they offer. As discussed
here, disabled domestic students who enter HE, despite its selective nature and inflexible
culture (Tinklin et al., 2002; Burke, 2005), often face various discriminatory social and
environmental practices (Cottrell, 1996; Fuller et al., 2004). Resultantly, these unsound
practices can hamper their educational progress.
In the study discussed here, HE refers to university education including both preand post-1992 institutions (HESA, 2006). Post-1992 institutions, as former polytechnics
accorded university status after 1992, often already had learning support services in place
for disabled students (Riddell et al., 2005). Thus, these universities appear to have a
better record of attracting students from under-represented groups, helping them to
overcome their disadvantages. Conversely, red-brick pre-1992 institutions have had to
establish facilities and services to meet the increasingly diverse student population’s
needs (Ibid.). The study concerned here selected thirty disabled international students (all
of whom have been given pseudonyms for purposes of confidentiality) from both preand post-1992 universities, based on a convenience sampling strategy. This aimed to
highlight the differences in service provision for participants, and revealed interesting and
original results.
Beauchamp-Pryor (2004) and Brown and Simpson (2004), point to the lack of
clarity in the way disability is defined within universities, and how
disabled students are consequently treated in HE, suggesting that HE is more
inclined to adopt the individualistic definition of disability in the DDA. It can be argued,
therefore, that despite institutions’ claims of inclusive policies and practices, in reality the
implementation of these policies indicates a more integrated approach, grounded in the
individualistic interpretation of students’ perceived ability “deficiencies” (Simpson, 1996:
22).
The impact of the individualistic definition of disability becomes evident when
policymakers, administrators, academics and support staff attempt to change the
individual, and meet needs rather than implement structural changes (Borland and James,
1999). The measuring of impairment through the use of the Universities and Colleges
Administration Service (UCAS) categories, for example, has shifted away from the social
interpretation of disability and created another hindrance for disabled students (Hurst,
1996; Brown and Simpson, 2004). In disclosing their impairments formally on the
UCAS form, or even informally to a university, students may fear being labelled, treated
differently or even rejected from their choice of course and university (Cottrell, 1996).
Yet, there is a lack of research into disabled international students’ experiences of
completing UCAS forms, their thoughts on the adequacy of the ‘disability’ categories,
and their feelings about disclosing their impairments. The research by the current writer
addresses these issues in detail. Gloria’s statement demonstrates the need to look closer
at these matters:
I didn’t specify what, I just told them [name of the impairment]. Yeah, I wasn’t
straight forward to the point because I didn’t know what they needed the
information for and I thought that could have been used against me, in a way or
other, so I didn’t, yeah.
Borland and James (1999) and Beauchamp-Pryor (2004) argue that disabled
students are more limited in their choice of courses, with restrictions placed on subjects
such as archaeology, marine science and health and physical education, due to difficulties
in accessing the learning environment. In addition, Cottrell (1996) believes that students
usually enter university unsure of the provision of, and funding for, the support they may
need. Beauchamp-Pryor (2004), for example, found that students often felt that promised
help did not always materialise. Students had to be continually proactive in ensuring that
issues were resolved, during which time, they may have missed lectures and deadlines
and been forced to request extensions. Yet, the concept of ‘mitigating circumstances’ and
the reasons behind it seem to have been overlooked in other research studied
thus far. The research by the current writer is interested in the issue of disabled
international students needing and being granted extensions. Maria, for example, states:
I certainly require extensions but am not allowed anything. The [name of university]
is a ‘you cut it or you don't’ environment.
In most institutions, students’ academic hurdles are seen as objective and
manageable. Disability hurdles, however, may be perceived as subjective, individualized
‘problems’ and their successful negotiation at the discretion of staff, who make the final
decisions regarding appropriate solutions (Borland and James, 1999). Furthermore,
Holloway (2001) emphasises the disabling nature of an inaccessible university.
The following studies identify barriers that disabled domestic students encounter in
British HE. Borland and James (1999) highlight the issues of concern to disabled
students’ learning experiences, including policy implications in the areas of disclosure,
access, quality assurance, and institutions’ moral and social stances towards them. In
research conducted both before (Stone et al., 1998) and after (Tozer, 2006) the
introduction of the DSA, the inadequacy of governmental financial support available was
criticised, particularly for disabled part-timers, who should have ready access to essential
finances, rather than relying on charitable trusts such as the Snowdon Scheme. Yet,
studies on the ways disabled international students obtain funding for their various
expenses, including impairment related costs, are limited. Therefore, in the research by
the current writer, a heavy weight is given to different aspects of funding and related
barriers that students may encounter. Maria was asked about the means that she paid for
her tuition fees; she responded thus:
I was considered for full funding at first. At one point a woman in the admission
committee realized my disability and called me in to a meeting and said, among
other ruthless things, that "we won't give you funding because we can't fund
somebody who we think will fail." After that my previous boyfriend offered to lend
me money to finance my first year.
Moreover, Parker (1999) questions the PA system in helping students to gain selfconfidence, by increasing their dependency on a university employee. Nevertheless, little
is written about this unique relationship between PAs and disabled international students
in particular. In the research by the current writer, specific attention is given to this
sensitive relationship; participants are asked a number of questions about their
experiences of using the PA system, and if they feel empowered working
with their PAs. One informant, Ed, for example, discussed the way in which the
relationship with the PA could exclude him from classmates in a class context:
I felt something like there was a gap between me and my classmates, because, you
know, there is no reason, for example, for me to ask help from my classmates,
because I had my personal assistant with me, who is do everything for me. So,
there was very limited communication between me and my classmates.
Teaching and assessment procedures, which are intended to widen access to the
curriculum and accommodate a variety of learning styles, can also act as barriers for
disabled students’ full participation in HE (Fuller et al., 2004). Additionally, barriers
such as physical access, curriculum delivery and assessment procedures, have also been
criticised (Chard and Couch, 1998; Shevlin et al., 2004). Similarly, Konur (2000) argues
that disabled students have been subjected to potential legal discrimination by the HE
system at every stage, including recruitment, admissions, service-provision, placement,
and graduation. Riddell et al. (2004) also recognise disabled students’ poorer degree
classifications compared with other students. With little previous research to reflect on, a
specific emphasis is given to each of these areas in relation to disabled international
students in the research by the current writer. Responding to a question about her
experiences of graduation, for example, Kate stated:
I telephoned in advance and had arrangements made so that I would be able to sit at
the side before climbing the stairs to the stage.
It appears that disabled students are often expected to go to extreme lengths and
display skills beyond those required by their non-disabled counterparts, to merely access
the same opportunities and achieve the same entitlements as non-disabled students.
Preece (1995) believes that barriers in HE reflect attitudinal, practical and access issues,
and considers underachievement to be the consequence of oppression from a variety of
sources. Beauchamp-Pryor’s (2004) study shows that disabled students often felt their
own views were perceived as unimportant or ignored and a low priority was given to their
presence. However, the Higher Education Funding Councils for England (HEFCE)
(2003a: unpaged) claims that by providing funding, the organisation has helped
universities with little experience of provision for disabled students to move towards a
‘base level of services’ and physical infrastructure. These institutions are required to
make anticipatory adjustments to ensure that all disabled students and staff
have equality of access, responding to the new duties under Part 4 of the DDA
(HMSO, 1995). The Quality Assurance Agency (QAA) (1999) also states that
institutions should ensure that all their policies, procedures and activities, including
strategic planning and resource allocation, enable disabled students to participate in all
aspects of academic and social life.
Of those studies discussed above, only three (Stone et al., 1998; Brown and
Simpson, 2004; Riddell et al., 2005) refer to disabled international students’ experiences.
Interestingly, all three are in the context of the limited financial support open to them.
Preece (1995), however, refers to the experiences of domestic disabled students with an
ethnic minority background without acknowledging disabled international students.
Similarly, with no specific reference to disabled international students’ manifold
identities, Riddell et al. (2004) focus on the way disabled students from different
backgrounds (socio-economic position, ethnicity, impairments and gender) negotiate and
prioritise their multiple, yet fluid identities in the HE setting. Hence this gap in
knowledge in studying disabled international students’ experiences, as part of a larger
disabled student body, highlights the need and originality of the kind of research
discussed here.
Non-disabled International Students
In this section, studies addressing a range of barriers that non-disabled international (nonUK) students may face, will be critically reviewed. It is hoped that this analysis will
highlight the extent to which these studies include or indeed exclude disabled students’
experiences. Globally, the future of educational institutions contributing to a competitive
modern economy and an inclusive society (HEFCE, 2003b; Naidoo, 2003) depends on
their ability to attract and develop competitive international students. Pelletier (2003)
argues that international students have always studied at British universities, but
nowadays have a significantly greater impact on the economics and professional rationale
of HE. Whereas early scholars’ search for knowledge elsewhere was due to a lack of
relevant educational institutions in their home countries; nowadays, it is the Western
economy that markets and recruits internationally (McLean et al., 2003).
Papatsiba (2006: 99) argues that the civic rationale of student mobility as a
‘secondary socialisation’ through the introduction of certain programs will help to create
new European citizens. These programs include ERASMUS (1986) (a European
Commission exchange programme that enables students in thirty-one European countries
to study for part of their
degree in another country [UK Socrates Erasmus Council, 2006]), and the Bologna
Process (1999) (an intergovernmental initiative, which aims to create a European HE
Area [EHEA] by 2010 and to promote the European system of HE worldwide [Europe
Unit, 2006]). All of this reinforces the political vision of intertwining personal and
professional development, including a good command of languages, heightened
interpersonal skills, practical application of knowledge and strengths such as autonomy,
initiative, resilience and self-confidence (Papatsiba, 2006).
As McLean et al. (2003) remark, because many universities organise their
educational systems, assessments and curricula within a national framework,
predominantly serving the dominant culture’s social expectations, students from differing
cultural backgrounds may feel excluded from accessing the system. Mackinnon and
Manathunga (2003) point to different academic cultural barriers ranging from the
structure of essay writing, plagiarism and assessments, to the interaction between staff
and students. No other research studied thus far has discussed the pedagogic, linguistic
and cultural differences in relation to disabled international students. Hence in the
current writer’s research, participants have been asked a range of questions concerning
these variations as well as difficulties experienced in academic learning and teaching.
Olivia, for example, stated that:
For the first several weeks, it was simply hard to understand what teachers were
saying. I could not keep up [in] the lectures.
Turney et al. (2002: 20) identify the implications of often unrecognised institutional
“whiteness” to be the stigmatisation of “racialised” and “ethnicised” student and staff
groups studying and working within HE institutions. However, studies on the impact of
both positive and/or negative treatment of disabled international students, based on a
combination of their differences in impairments and nationality, appear to be absent. The
current writer’s research is interested to learn about participants’ views and feelings about
the possible discrimination they encounter, based on their different identities.
The report of the Joint Working Group of the Council for Education in the
Commonwealth and UKCOSA (2000) (here onwards referred to as Joint Report) suggests
that the internationalisation of education can also raise problems in pedagogic quality,
expense and the homogenisation of academic culture. Furthermore, Walker (1999: 54)
emphasises that “overseas students [are] desirable in principle but difficult in practice”.
Simpson (1996), Pelletier (2003) and Burslem (2005), each highlight a number of
the following barriers, which are grouped in five broad categories at pre-entry,
entry, on-programme and at exit for international students. These are: practical
challenges, which include time-management, visas, provision of information pre-/postarrival, accommodation and policies relating to financial support; emotional and affective
issues, which include stress, homesickness, lack of confidence and participation in
support services; cultural adaptation and integration issues, which include developing
adequate cross-cultural skills and English language acquisition/competence; pedagogic
difficulties, which include unfamiliarity with the UK system and academic conventions,
seminar, study and writing skills, teaching and learning experiences and linguistic
diversity; and finally, curriculum and assessment issues, such as appropriate course
delivery design, performance and outcomes. These areas appear to be under-researched
in relation to disabled international students, and the research by the current writer
challenges this state of affairs by asking relevant questions about each of these five
categories. Responding to the question, “Have you experienced any emotional
difficulties in your university life?”, for example, Iris talked about her loneliness, stating
that, “The big problem is that I don’t have a person whom I can rely on.”.
Despite higher fees and fewer scholarships, particularly for research students, since
1980, non-European Union (EU) students’ fees have been raised to full-cost levels, whilst
EU students pay the same as domestic students (Joint Report, 2000). The host countries
are concerned with ensuring that most international students are not subsidised, and that
the institutions recover the costs of teaching (Ibid.). Yet, the report still claims that the
culture of academia is attuned to the internationalisation of knowledge rather than market
forces. However, the government was invited to consider addressing such areas as:
better publicity on the issuing of National Insurance numbers and working regulations,
rewording of stamps and vignettes in passports, and caution in imposing additional
charges. Other agencies were asked to consider providing improvements to immigration
pre-arrival information, national initiatives on training for academics, the availability of
data to inform policies, and the need for regular monitoring of international students’
experiences (Ibid.).
In all the literature reviewed here, there is no mention of the problems caused by a
disabling HE for disabled international students. Indeed, the Joint Report (2000: 46)
states that: “Academics are interested in able students, particularly for postgraduate work,
and universities compete within countries for the best students.”. This raises questions
about ‘not so
able’ or indeed disabled international students’ presence in British HE. Despite this
issue not being fully addressed, HEFCE (2003a) tentatively suggests that the organisation
appreciates that issues of race equality are not clear-cut - individuals may have multiple
identities - and that discrimination can affect people in different ways.
Disabled International Students
The majority of universities world-wide have a duty to develop a globally diverse student
population, through equitable educational access paths (McLean et al., 2003). This is
achieved through the process of internationalising curricula and expanding exchange
programs for ‘all’ students, including in principle, disabled students. Yet, all of the
physical and educational barriers mentioned previously for disabled domestic students
may be particularly heightened for disabled international students, who may also contend
with possible additional cultural and linguistic difficulties experienced by a number of
their non-disabled international counterparts. Most international students experience a
degree of culture-shock: how people live and work in other countries may challenge their
own experiences. For disabled international students, however, this is often exaggerated
by additional factors such as the level and type of academic support required and
provided; physical and informational accessibility, and different cultures of disability,
which can significantly affect a successful study period (Ibid.). All of these areas remain
under-studied in other research. Issues such as differences in cultural interpretation of
‘disability’, and the type of support that students receive are explored in the research by
the current writer. Joseph, for example, states:
The feeling that in England everything is more based on finances. All the help is
available as long as you have the right funding. In my country not all the help is
available, but the help you do get, has a more social inclusive character.
For students who require high levels of support in their home country, additional
financial and personal burdens associated with this support can make the transition
particularly difficult (Ibid.). As Skill and UKCOSA (2006) suggest, these students may
initially feel they must cope on their own without assistance, therefore choosing not to
disclose the details of their impairments. Moreover, the identification of international
students’ impairments and related support needs may be difficult, due to language and
cultural barriers. Cottrell (1996), for example, suggests that in diagnosing dyslexia, tests
to assess non-native English speakers are not
always available. There is no substantial data available from previous research
concerning this essential difficulty. Olivia’s following response in the research by the
current writer indicates the inaccessibility of the assessment procedure for students whose
native language is not English:
I didn't want to bother to explain … problems to the Disability Services staff in
English, it was quite tiring to speak in English when I first arrived.
McLean et al. (2003) argue that as global education opportunities expand, the
failure to consider the implications for disabled students is potentially discriminatory, as
it can restrict their employment and success opportunities. Skill and UKCOSA (2006)
state that institutions have a duty to treat all disabled and non-disabled students equally
regardless of other characteristics, including nationality. University International
Officers are encouraged to learn how to relate to disabled international students
specifically and respond to their needs. HEFCE (2006) also claims to be committed to
ensuring that all students - including under-represented groups - who have the potential to
benefit from HE, can do so. Having said this, improvements in general services such as
networked software, loan equipment, note-taker support, and teaching adaptations for
disabled domestic students, may also indirectly benefit disabled international students
(UKCOSA and Skill, 2006). It must be emphasised that there are no specific grants
available for disabled international students, who are only allowed to remain in the UK
on the condition that they make no recourse to public funds, including such welfare
benefits as DSA. The majority of institutions therefore identify a suitable stream of
funding, for example, from overseas fees income or other sources, to provide academic
support including auxiliary aids and services for disabled international students (Riddell
et al., 2005; UKCOSA and Skill, 2006). In rare cases, however, adaptations for
individual international students may not be reasonable for an institution to make
(UKCOSA and Skill, 2006). In this context, a situation is deemed to be unreasonable if
the cost of an adjustment is too high, or if there is a lack of specialist support, such as
American Sign Language (ASL) interpreters. The concept of ‘unreasonable’ also extends
to a situation, where a requested reasonable adjustment would lower academic standards
or oppose competencies laid down by a professional body. In such cases, the relevant
institution would consider the student on an individual basis; possibly rejecting the
person concerned if meeting her/his needs was not possible; although this must not lead
to a general policy of refusing certain disabled students (Ibid.).
Despite these concerns, it appears that very little is being written about disabled
international students’ unique experiences, although figures provided by HESA indicate
that between 2001/02 to 2004/05, the percentage increase in disabled international
students entering British HE (38.24 per cent) exceeds both disabled domestic students
(37.02 per cent) and non-disabled international students (31.38 per cent). In spite of this
considerable increase in disabled international students accessing HE, there is no
designated organisation responsible for their affairs. This means that there are no official
services for representation, advice, policymaking and campaigning purposes, which once
again emphasises the absolute necessity of carrying out research into disabled
international students’ experiences, with a view to creating practical solutions to address
their needs.
The need for further research and practical insights is highlighted by one
informant’s comments from the current writer’s research. Tanji, for instance, when asked
“how could your university experience improve?” stated:
by creating a good support system, a circle so that international disabled students
know where to go for advice and understand what rights they have. At the moment
advice and help is too fragmented.
Consequently, disabled international students may consider themselves as invisible, and
that their difficulties are either “irrelevant” or “added on as an optional extra” (Vernon,
1999: 391). They may feel discriminated against and rejected from such disabled
domestic students’ groups as Students With Disabilities (SWD), within the National
Union of Students’ (NUS), and also from non-disabled international students’ groups
such as the Council of International Students (CIS). Tony’s statement reflects this:
Social life is quite bad actually because if you are a disabled student it is always
hard anyway, but then if they see that you are an international disabled student,
they even shy [away] a lot more, thinking probably you are different.
This sense of isolation and feeling of being marginalised could contradict the following
statement from Skill:
Disabled students come under the Act [SENDA] no matter what their
status: part-time, overseas, evening class, postgraduate, undergraduate,
distance learning, etc. (DEMOS, 2003: unpaged).
Yet, it appears that this contradiction has not been fully addressed in either
policy or practice.
Conclusion
This paper has introduced some of the issues pertinent to disabled international students’
experiences in UK universities, and highlighted the necessity of research into this area.
The chapter has addressed specific difficulties resulting from a lack of inclusive policies,
which involved exploring the experiences of disabled home students, non-disabled
international students and disabled international students. This latter group has been the
key focus of the chapter for three important reasons: the researcher’s own personal
experience of being a disabled international student; the growing numbers of this group
within UK universities; and the limited available research and information on the
constraints and barriers encountered by this group. This chapter has provided an
overview of only a small number of the key issues, but the current writer’s research takes
this further. The study hopes to enhance knowledge in the field and highlight key areas
for future policy, working to improve disabled international students’ academic and
social experiences within UK universities.
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CHAPTER 9
Male Anorexia Nervosa: Risk, Subjectivity and Disability
Chris Till
Introduction
Attempts to develop a sociological theory of Anorexia Nervosa (AN) have tended to
concentrate on a, justified, critique of the psychological model (Malson, 1998; Hepworth,
1999). The latter’s theorisation of the condition is seen as problematic because of its
tendency to position AN within the individual by underplaying any potential social
aetiology. Recent developments in theories of AN (Lester, 1997; Brain, 2002) have
highlighted the reified split between individual and culture present in such theories and
the somewhat deterministic relationship assumed between the two, as well as its over
dependence on gender difference. These deficiencies are further highlighted when the
theories are applied to male AN. In this chapter, parallels are drawn between the social
model of disability (Barnes and Oliver, 1993) and these existing theories of AN, as both
seek to unsettle scientific theories that place emphasis on the individual.
This chapter proposes that a new theoretical approach to Anorexia Nervosa is
necessary due to deficiencies that come to light partly through analysing existing theories
for their ability to handle male AN. Some of the latest theoretical developments have
taken steps towards allowing for a sociology of male AN by attempting to overcome the
disembodiment of, and the primacy of, sexual difference in theories of AN. Recent
critiques of the social model of disability are combined with this analysis of AN to more
fundamentally problematise the psychological model of AN with a thoroughly
sociological analysis of how AN is perceived. It is suggested that an approach influenced
by the sociology of knowledge, and Foucauldian analysis, will enable theorising that is
not dependent on sexual difference and does not reify separations between mind and
body, or individual and
society, by shifting the focus onto knowledge. This enables an understanding of the
development of an anorexic subjectivity by genealogically unpicking the recent history of
thought on AN and other related health discourses which contributes to this subjectivity.
In this chapter it is my intention to deny the positioning of AN within the individual but
in order to accurately represent other writer’s ontological positions it has sometimes been
necessary to use their terminology. Such phrases as ‘the anorexic’ and ‘anorexic
behaviour’ have therefore been used when paraphrasing despite my antipathy towards
them.
Against the Psychological Model
Early theorists of anorexia, in the wake of second wave feminism, emphasised a shift
away from the individual psychological model which was thought to prioritise what was
identified as a Cartesian split between mind and body. The work of influential writers,
also engaged in treatment, such as Hilde Bruch (1978), were thought to perpetuate such a
split by presenting the desire to engage in anorexic behaviour as other to the patient’s self,
as something to be conquered and cast out. Such conceptualisations were thought to be
justifying the relationship the anorexic already had with their bodies, as an alien other
which must be controlled.
The traits associated with AN were seen by some to be wholly consistent with
cultural messages about women and their roles; that women are encouraged to be selfsacrificing, especially by giving up food for others’ benefit. This is predominantly seen
as being a learnt behaviour through interactions with the mother (Orbach, 1986: 60).
There is a perceived conflict between the mother, who represents the traditional feminine
role, and the daughter’s simultaneous desire to, and guilt experienced for, transcending
her mother (Chernin, 1986: 49-50). This is seen in terms of a tension between what is
deemed to be the traditional role of the housewife and a more independent, autonomous
feminine role. These provide almost no room to be applied to male AN and either
pathologise all female experience or resort to psychological theories of inadequate
socialisation.
A more political perspective on this behaviour is depicted by Susan Bordo (1993:
159-160) who perceived anorexia as a form of protest against patriarchal culture through
positioning the revulsion towards hips, stomachs and breasts in anorexic women to be a
rejection of traditional, domestic femininity. Bordo’s position is not so different from
that of earlier
writers except that those writers tended to position AN as a problem of identity with
expectations of what roles women should fulfil becoming ever more complex, demanding
and often contradictory.
Bordo’s (1993) work has some affinity with similar attempts to apply a poststructuralist critique to the study of AN by Helen Malson (1998) and Julie Hepworth
(1999) who use a discourse analysis and social constructionist approach respectively.
They all aim to problematise a Cartesian split, which they claim predominates in
psychological and earlier feminist theories. In the process of deconstructing the mindbody split of psychology, however, they create their own division between culture and the
individual. While trying to avoid following individual psychiatric models which
prioritise individual factors they tend to reverse this dichotomy and portray the individual
as almost a simple expression of culture. This leads to theorisations becoming trapped
within the realm of feminine experience as anorexia is seen as a kind of war waged
against the body by a self that is over-determined by culture. Eating disorders are seen as
fundamentally consistent with female experience in the Western world (Malson, 1998).
With these theories “Sexual difference becomes the primary and indispensable lens
through which anorexia is intelligible” (Brain, 2002: 153).
Theorising AN as the ‘crystallization of culture’ (Bordo, 1993: 139) or a ‘metaphor
of our time’ (Orbach, 1986: 3) takes away the subjectness of women - that the theories of
Bordo and Orbach criticise psychology for denying them - by turning them into cultural
dupes who are slavishly following a quest for a particular body image (Weiss, 1999).
With this approach, the individual is again presented as an inherent part of the problem
by reading cultural messages of the desirability of slimness too literally. However much
the theorists may try to place the blame within culture, they will inevitably throw
emphasis on to the individual, as not everyone, or even all women, become anorexic. In
addition, they are simultaneously in danger of constructing a subjectivity for women by
making generalising claims about how women experience the world.
The Art of Anorexia
These problems can be avoided by focusing the analysis on subjectivity and its
constitution through knowledge. Lester (1997) proposes the use of Foucault’s
‘technologies of the self’ (Foucault, 1988; 1990) to understand the art of existence of
those that engage in anorexic behaviour. This takes the form of a:
conscious and deliberate shaping of the self according to a particular philosophy of
living and through a given set of culturally meaningful bodily practices (Lester,
1997: 482).
Anorexic women achieve a feeling of separation from their body by denying its desires
and, therefore, be like a man whose body has been historically invisible (Robinson, 2006:
242). But for Lester, anorexia does not come from the belief that the anorexic is not her
body; rather it is from the acceptance that she is defined by her body. Using Foucault’s
care of the self, Lester positions anorexic behaviour in terms of life as a work of art
which is manifested through theory and practice. The theory is an attitude of self that an
individual wishes to present and the practice is the operations through which this theory
is articulated to construct a particular sense of self, often through the body.
The anorexic’s goal is not to lose weight, rather, it is the transformation of the self
which in contemporary Western culture is most obviously achieved through bodily
practices. Food is used, Lester suggests, to symbolically renegotiate the boundaries of
the self in response to concerns, stemming from cultural representations, around gender,
identity, autonomy and sexuality. The denial of food is a way of policing the boundaries
of the self and maintaining a sense of autonomy and individuality, things that are highly
valued in contemporary, Western culture. The woman can regain agency through
redefining the boundaries of her body, therefore her self, to the extent of amenorrhea, and
these boundaries will only open again through her choice (Lester, 1997).
There is simultaneously a counter narrative of the thin woman, one in which she is
seen as inconsequential, fragile and occupying very little physical and social space. The
anorexic holds these two contradictory positions within themselves simultaneously.
There is an inherent paradox; the drive for slimness and their attempt to construct their
self as separate to their body is their route to autonomy, control and purity but this very
same slimness keeps them in a position of subordination by conforming to the perceived
position of weakness and inconsequentiality. For Lester the anorexic comes to this
realisation at a relatively advanced stage of the condition and abandons the theory of their
project and concentrates fully on the practice. At this stage the anorexic has abandoned
any idea of achieving their goal and merely accepts their fate as subordinated. They
accept that they are stuck in a golden cage (Bruch, 1978).
Lester (1997) claims that central to anorexia is an acceptance by the anorexic
woman that she is defined by her body in this culture but it is
questionable whether men are defined by their body in this culture in the same way.
Male AN may be an acceptance by men that they are their body, as arguably men are
more defined by their bodies today than at previous times in history. It is, however,
unlikely that recent objectification of men’s bodies could undo the centuries of
philosophical dedication to positioning men within the mental and cultural realm.
Lester’s uses of Foucault’s (1990: 43-45) care of the self to suggest that people engage in
bodily practices that are informed by a theory of existence, can be useful for theorising a
broader understanding of how AN develops between culture and the individual in a way
that does not further reify the sexual difference, but does allow for the acknowledgement
of its cultural impact. It is unwise to underplay the importance of gender, patriarchy and
the objectification of women’s bodies for an understanding of AN in relation to women
or men. Such issues are influential on how men and women develop a sense of self as
patriarchy constructs a hierarchy within men, as well as between men and women.
Embodied Anorexia
Josephine Brain (2002), justifiably, calls for a more embodied theory of anorexia, as she
suggests that this will help to overcome the limitations of seeing AN as inherently part of
gendered oppression and as coextensive with the experience of Western women. With
theories that assume AN to be inherently connected to this oppression and experience of
women, sexual difference is seen as existing prior to a sense of self. Brain suggests that,
on the contrary, sexual difference is a way of making sense of the experience of the body.
The anorexic’s body is perceived as ‘wrong’ and this ‘wrongness’ is understood through
the lens of sexual difference (Brain, 2002).
She takes her cue from Butler’s (1997) collapsing of the inside and outside of
discourse, which demonstrates the discursive construction of materiality. Brain positions
it within a desire to be desexed, by moving beyond gender. AN is a process of aligning
the body with the body imaginary (Brain, 2002). Rather than seeing anorexia as a
symptom of gendered oppression, we can see the reification of sexual difference as a
consequence of gendered oppression and the perceived need to understand the actions of
the anorexic in such terms as being a further symptom of these reifications. Rather than
the anorexic refusing to be defined by their (female) body in favour of their (male) mind,
Brain sees the actions of the anorexic as a rejection of being defined by gender at all. It is
a shaping of
the body according to a body imaginary that is an attempt to refuse gender
categories and to be de-sexed, a rejection of ‘compulsory sexuality’ (see Dawson,
Chapter Four of this volume).
Brain (2002) makes an important step away from the use of the concept of body
image, which does not fully explain anorexia, as not even the thinnest fashion models
resemble a ‘successful’ anorexic of either gender. Instead, she claims that the anorexic is
shaping their body in line with a body imaginary (Brain, 2002: 160) which theorises the
process in a way that is less occularcentric as it does not unproblematically assume the
truth of the visual. The anorexic “refuses to be reduced to somebody else’s visual image
of her” (Brain, 2002: 165), the body imaginary, stems from the feeling of the body (Brain,
2002: 160); this reveals a phenomenological slant to Brain’s theory. Sexual difference,
Brain (2002: 160) claims, is a way of making sense of the experience of the self. Sexual
difference is not the only way in which bodily experience is understood. A fuller
understanding of AN requires knowledge of how this understanding is structured and
what cultural elements feed in to it. On Lester’s (1997) terms this is the theory that
informs the practice of anorexic behaviour. This avoids portraying the anorexic as
culturally determined, because Brain enables us to see them as embodied subjects that
have subjective experiences but these experiences can only ever be understood in terms
of theories of the self.
I propose that scientific and related forms of knowledge need to be assessed for how
they construct ideas about health and bodies in order to consider how they present
possibilities for us to understand our own experience of ourselves in the form of theories
of the self. It is not possible to suggest that any form of knowledge is directly causative
of a specific behaviour or sense of self. What it can be identified as doing is revealing the
world in certain ways (Heidegger, 1977) which suggest certain methods of relating to
ourselves. This position should not be confused with a relativist argument; there is not a
free floating subject freely choosing how to think of themselves from a number of
different yet equal options. Some ways of understanding hold more weight than others.
This can be assessed through salience in knowledge. If a proposition is reused in a
number of texts and especially if its influence spreads through to a number of different
types of knowledge, it can be assumed to have relatively more influence than other
propositions.
Lester (1997) provides a framework that moves away from a reified separation
between individual and culture by stressing the importance of a theory of self for
understanding how people behave. Brain’s (2002) theory
allows a move from the centrality of sexual difference for understanding anorexia
with a shift away from occularcentric notions of the subject’s relation to their body. The
anorexic body and anorexic behaviour are socially othered, yet hold an allure to some
people. To understand this requires an interpretation of how these types of bodies and
behaviours have come to be seen as ‘wrong’, ‘abnormal’ or ‘immoral’. For this we turn
to a consideration of how theorising the othering of self-starvation might be possible. To
do this it will be useful to draw analogies between the social model of disability and
existing feminist inspired theories of anorexia.
Perception and the Construction of Alterity
In calling for a sociology of impairment, Bill Hughes (1999: 160) stresses the importance
of the understanding of:
how the impaired body is constituted as alterity and disorder, and therefore
invalidated not through responses to it, but in the interpretive act of perception that
produces it.
Hughes’ (1999: 160) position stems from a critique of the social model of disability.
Claiming that it does not question the relationship between perception and reality,
Hughes takes an ‘aesthetic’ view of the production of knowledge that rejects the fetishism
of scientific observation. Existing feminist theories of AN (Malson, 1998; Hepworth,
1999) question the positioning of AN within the individual and are concerned with
patriarchal power relations, similarly to the social model of disability which challenges
the victim blaming of the individual model of disability. Existing feminist theories of AN
question the positioning of AN within the individual and view patriarchal power relations
in a similar way to how the social model of disability views a disabling society. But the
fundamental medical perception of the condition, that self-starvation is wrong, is not
questioned. It is not the intention of this chapter to encourage self-starvation, but merely
to suggest the importance of understanding how it is perceived and how it has been
construed morally. Some work has been conducted to trace the history of self-starvation
prior to the emergence of AN as a medical category (Bell, 1985) but a genuinely critical
history of thought on self-starvation has not been conducted since it has come under the
realm of science.
Focusing analysis on knowledge will be an important step towards overcoming the
problems with a genuinely sociological theory of AN that have so far been highlighted.
The focusing on knowledge and perception, rather than individual experiential accounts,
will enable a move away from
placing AN within the individual which would reassert the separation between
individual and society which Elias (1991) identified as being a historically constituted
idea. By focusing on knowledge production we can see how the disciplinary gaze
constructs subjects and encourages perceiving of oneself in certain ways. When
subjectivity is discussed as being influenced by knowledge in this chapter, it is not a
simplistic matter of culture being taken on by the individual, that the individual’s sense of
self is defined by a colonising culture. Instead, a realm of subjectivity is proposed; a
complex interface between many elements including individual subjects, knowledge and
social, political and economic forces.
Expert knowledge is a particularly important subject of analysis because it exists in
a space between individual and culture and helps to demonstrate the falsity of this
separation. It is produced by individuals, but is wholly dependent on epistemic
communities in order to be produced; as all knowledge builds on past knowledge, there is
no singular thought (Fleck, 1979). The consensus of a community is also required to
bestow legitimacy and objectivity upon it (Ziman, 1968: 9). Peer review, for instance, is
essential for scientific status (Porter, 1995: 12). Also, ‘expert knowledge’ is of particular
interest because of its privileged and powerful position. When psychology or medicine
produces knowledge about people, they are caught in its gaze and “To be subjected to the
gaze of another is to have one’s objectivity disclosed to oneself” (Hughes, 1999: 161).
The production of knowledge about human beings, unlike other objects of
knowledge, has a feedback loop. This is because they are what Hacking (1999) refers to
as interactive kinds. Knowledge produced about people affects how they relate to
themselves. This can happen in two main ways: when instructions or advice are
produced with the explicit intention of influencing self-perception and when theoretical
knowledge is produced and spreads in to common knowledge. MacIntyre (1992: 900)
demonstrates this case with reference to the way that Freudian psychoanalysis provided a
language with which to talk about unconscious reasons for behaviour. New kinds of
neuroses were created because people in certain social circles became ‘over-interpretive’
as they continually analysed their own actions for underlying neuroses. This is a very
specific instance of theory creating a new way of being that people inhabit.
Conceptualisations of the subject have been seen in this chapter as methods of governing
as they produce a framework through which people can understand themselves, judge
their behaviour and modify it accordingly (Burchell, 1996; Dean, 1999). This, of course,
does not mean that they must
perceive themselves in this way. We now turn to the issue of how a theory of
anorexia based around knowledge, perception and formation of self may be developed.
Bringing the Future in to the Present
Karl Mannheim (1936: 237) proposed studying the relationship between knowledge and
existence through analysing how social context influenced not only the emergence, but
also the form and content, of knowledge. Mannheim did not himself take a further step
and move on to how such knowledge then contributes to providing the context for people
to understand themselves and recreate the social world. Foucault (1990), however,
explores the ways that knowledge provides people with a theory for life or an art of
existence. It is the position of this chapter that rather than being a pathological deviation
from ‘normal’ psychology, AN is “an extremely complicated response to a confusing
social identity” (Orbach, 1986: 25), although not one that is only informed by the evils of
consumer culture but uses rationalities consistent with contemporary medical knowledge.
Society in this sense potentially disables the individual, advice is given on how to manage
their existence and yet such behaviour is then portrayed as pathological.
Following Lester (1997) it will not be assumed that culture automatically
determines the individual’s sense of self or that there is a crude separation between the
two. What an approach using Foucault’s technologies of the self can bring is an
understanding of how rationalities open up various possibilities for existence and relating
to oneself. They provide a theory for existence that can be practiced in a variety of ways
by individuals. Health discourses are not to blame for AN but the ways that they try to
influence behaviour and manage populations help to open up the possibility of relating to
oneself in an anorexic fashion.
In his recent work Nikolas Rose (2007) has discussed how knowledge opens up
possibilities for existence or realms of subjectivity. For Rose there has been:
an increasing emphasis on the responsibility of individuals to manage their own
affairs, to secure their own security with a prudential eye to the future (Rose, 2007:
4).
Rose identifies “technologies of optimisation” which enable us to see our bodies, and our
selves, as manipulable and reveal ways in which our bodies can be improved, our health
maximised and life extended. What is especially important for understanding the ways in
which potential
anorexic subjects are construed is the ways in which potential futures are brought into the
present and makes possible illnesses subject to calculation and intervention (Rose, 2007:
19).
Emphasis on the seemingly predictive powers of genetic technologies, Rose (2007)
suggests, is leading to a genetic subjectivity but this does not take the form of a reduction
of the human subject to a deterministic expression of genes, as might be expected. For
Rose (2007), rather, this kind of subjectification does not necessarily restrict the freedom
of human beings but creates a subjectivity for them, a language for expressing themselves.
Genetic knowledge reveals our bodies to us as realms of possibility by demonstrating the
propensity to future illnesses. It encourages immediate action rather than locking us into
a determined fate. Also, while it may individualise, it does not isolate the subject; rather,
it positions them within networks of relatedness and obligation (Rose, 2007). The subject
is seen as part of genetic heritage with a responsibility to future generations, as well as
society more broadly, to act now to reduce the risk to their own health and that of future
generations. The responsibilities of the individual become ever more acute.
Predictive approaches to health began being employed from the start of the
twentieth century with the introduction of techniques developed by the insurance industry
(Ewald, 1991), which allowed the calculation of risk profiles enabling allocation to risk
groups. From this stems probabilistic reasoning which can determine the way that an
individual should be managed. This form of rationality allows an individual that is
allocated to a particular risk group to be legitimately acted upon as if they are almost
certain to be affected in the most extreme way by the risk (Padovan, 2003: 487). Risk
assessment became especially important as medicine in the Western world developed
more of a concern with lifestyle issues with the emergence of ‘social’ diseases
(Armstrong, 1995: 398), placing illness within an extra-corporal space rather than in the
body per se. Preventative medicine of this kind became especially useful to states
motivated by the need to reduce costs incurred by national health programs (RUHBC,
1989: 140-141). Around the middle of the nineteenth century the health profession began
to be tied to the interests of the state and, therefore, became concerned with issues of
managing the population (Hodgkinson, 1968). The type of governing that came to be
employed is one that uses “specific ways of problematizing the future” (O’Malley, 1999:
461). The actions that those who are governing wish people to take are presented as the
most rational but this, like any social action, has the potential for
unintended consequences. The following is an illustrative example of how the
theory that has been discussed so far can be applied.
Food Labelling and Guideline Daily Amounts (GDA)
Food labelling encourages people to understand food on certain terms to see it as the sum
total of its constituent nutrients, fats, and other elements. As Duff (2004) claims, with
reference to Australia, there is a movement towards supplying people with more
information in order to make informed choices and away from prescribing specific foods
that need to be consumed. Nutritional information makes food calculable. This method
of health promotion is consistent with liberal governing that adheres to “a rationality
always suspicious of governing overmuch; a form of government always critical of itself”
(Osborne, 1997: 346). Central to this method is a move away from the classical post-war
model of welfare states to “governing at a distance” (Rose, 2002: 228) to avoid the
hazard of developing a culture of dependency (Garland, 2003: 62), which could bring
with it astronomical public costs.
Such health promotion is explicitly an attempt to direct the behaviour of individuals
by making “it easier for consumers to choose a healthy diet” (IGD, 2006: 8) in order to
shape the population. An overtly coercive system such as the one that Osborne (1997:
348) described as ‘medical police’ would be counter to the liberal philosophy that
currently prevails. In order, therefore, to strongly encourage individuals to behave in a
certain way other methods must be used such as the development of Guideline Daily
Amounts (GDAs), which are standardised amounts of various nutrients that are deemed
to be desirable for individuals to consume in a day.
The individual can, therefore, calculate what foods they should be eating against an
objective standard. It is stressed, however, that GDAs:
are not targets for individuals to aim for, they are simply guidelines which provide
consumers with additional information which they can use to gain an improved
understanding of their daily consumption of Calories, fat and saturates (IGD, 1998:
8).
GDAs may not be intended as targets but they are presented in a table which may have
cultural echoes of other usages of tables in which individual elements are ranked against
each other and whose worth is judged accordingly, such as with school and university
league tables. The ‘improved understanding’ that is a goal of the use of GDAs is an
understanding in line with the Food Standards Agency’s (FSA) proposals (IGD, 2006: 9)
and is highlighted as being a response to concerns over the
increasing impact of obesity on the health of the UK population (IGD, 2006: 8). It is
specifically stated that “GDAs are derived from government population targets” (IGD,
2006: 14). Rather than a benign interest in the health of individuals, the GDA project is
intended to help to shift the behaviour of individuals in order to mould a certain type of
population.
This style of governing, it has been claimed, perceives the population in terms of
biopower (Foucault, 1998: 136) and is concerned with the administration of life, directing
the minutiae of everyday existence. Biopower is seeing politics as “heterogenous and
pervasive” (Dean and Hindess, 1998: 2). What is analysed are “the relations between
government and thought” (Dean, 1999: 19) or the rationalities of government. The
rationalities of government allow the emergence of new techniques, objects and subjects
of governance (Walters and Haahr, 2005: 291). This analysis can be considered on three
levels: there are philosophies that underpin government, rationalites that are derived from
these that formalise the philosophies, and actual practices or technologies which
implement the previous two.
This process of governing is not deterministic and certain kinds of subjects are not
necessary results of the process but the possibility of them is made. People are
increasingly governed as ‘Neurotic Citizens’, through their responses to anxieties and
insecurities about potential risk (Isin, 2004: 223). These risks and the anxieties and
neuroses associated with them are made visible and managed by rationalities of
government delivered to the individual as technologies such as GDAs. Individuals
govern themselves by considering the advantages and disadvantages of courses of action,
they use technologies to make these decisions (Isin, 2004: 220). People are provided
with standards against which to judge their behaviour against and their sense of self is, to
some extent, influenced by the manipulation of neuroses and a construal of the human
body in such a way as to encourage a concern with potential future health which can be
maximised with action in the present.
Conclusion
The purpose of this chapter was to address the deficiencies in existing sociological
theories of Anorexia Nervosa that have particularly been highlighted through their
inability to adequately deal with the condition being diagnosed in males. A deterministic
relationship, and reified separation, between culture and the individual and an
overdependence on sexual difference to explain the condition has recently been overcome
in
theory. This has been done through the use of Foucault’s technologies of the self to
understand the way that culture and the individual work together (Lester, 1997) and with
the development of a more embodied theory that sees sexual difference as secondary to
bodily experience (Brain, 2002: 160-161). These theories were combined with an
application of Hughes’ (1999) suggestions for a sociology of impairment to attempt a
method for theorising the moral constitution of self-starvation as alterity. Finally, it was
suggested that all of these elements could be brought together with a consideration of
biopower to understand how an anorexic subjectivity is constituted through a concern for
the management of the health of populations through risk.
Analysing this approach to health and governing can help us to understand the
complex relationship between behaviour employed by anorexics, and medical knowledge
and health advice. More research in this vein would enable an understanding of the
moral constitution of the alterity of self-starvation and ‘anorexic behaviour’ generally. In
turn this will make clearer the theory which informs the practice of AN (Lester, 1997)
and how such behaviour is perceived, which may make possible a more thoroughly
sociological theory of AN.
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