 |
the
objectives of the proposed program of research |
The
central concepts underlying this thesis are Michel Foucault’s notions of
governmentality and practices of normalisation. In
particular the way technologies of self induce a particular understanding of
desire/dis-ease. A kind of desire/dis-ease
that makes it impossible to envision ‘disability’ as anything other than
absence or negative ontology. I am interested in the ways individuals with
disabilities respond to the compulsion towards ableist normativity.
My project of speaking otherwise about ‘desire’ and
‘disability’ in the one breath is my attempt to unsettle hegemonic
understandings of disability, to create a movement of aggiornamento, to
open up an ecstatic ‘space’ where the flowering of positive spectrums of the
‘disablised self’ can be foregrounded.
The
object of the thesis is the exposition of the ways disablised/corporeally
ambiguous bodies are known and the effects of that knowing on the formation of
‘disability’ subjectivities. Having said that, part of the actualisation of
the thesis object is to ask a
number of related questions: What place (and there are multiple) has the
‘disablised’ body occupied in the Western imagination, and in the symbolic
productions of Western culture over the past two thousand years? And how have
these various positionings (often contrary) effected the formation of
‘disablised’ subjectivities at the level of function, structure and
institutions?
In
order to delimit the thesis topic, my programme focus has been restricted to
three main centres of interest:
q
Bodies
of knowledge
– two strands: theological and the
philosophy of liberalism;
q
Practised
Bodies
– the ‘disability’ question and its relationship to new technologies;
q
Desiring
Fleshly Ambiguity
– an exploration of the dynamic
between the desire and dis-ease of ‘disability’.
1.
Introduction
2.
Methodological
and Epistemological Assumptions
2.1
On matters relating to terminology
2.2
Methods
-
Poststructuralist Foucaultian methodology
-
Science studies techniques – e.g. actor network theory, SCOT (Pinch
& Bijker)
2.3
Positionality of the Researcher and
Ethics of Research
3.
Anomalous
bodies within Western Christian theology
3.1
De-construction: Judeo-Christian renderings of ‘disability’
3.2
Reclamation: The contribution of feminist and poststructuralist
theologies to a transgressive understanding of ‘disability’.
4.
Governing
‘disability’ in the spirit of the Enlightenment
4.1
The ableist sovereign subject of liberalism
4.2
Governing ‘Disability’
4.3
Social Role Valorisation Theory
4.4
At the Threshold - Freedom and equality, the dilemma of ‘disability
within neo-liberalism
5.
‘Disablised
Bodies’ in Process – the Nemesis of technologies?
5.1
Parameters and possibilities – philosophical excursions into technology
5.2
‘Disability’ meets utopianism and the romanticist turn, or a return
to the monstrous? Disablised bodies as the original cyborg
5.3
‘Upping the ante/anti’-
‘disablised’ bodies metamorphosed into the transhuman
5.5
Whither ‘disability’: New Reproductive Technologies (NRT’s), Human
Genome Project (HGP’s) as a new eugenics?
5.6
‘After the fact’ - morphing Ableism: technological applications
enforcing normalcy
5.6.1 Case Studies
- The Case of Clint Hallam's Wayward Hand
- Enigmas of Hearing: Bio-ears and other fabrications
5.7
The reining/reigning in of ‘disability’: the birth of ‘elective
disabilities’, shuffling of ‘deckchairs’
and definitions
6.
Desire/Dis-ease
of ‘disability’
6.1
Let’s talk about desire
6.2.
How far does the dis-ease go?
– Historical snapshots of torment, terror and hatred
6.3
Dreaming ‘disability’ – the pathologisation of desire?
6.4
‘Out and Proud’ – disability
culturalists and spectrums of the ‘disablised’ self
7.
Conclusion
1.
Introduction
2.
Methodological
and Epistemological Assumptions
At
the centre of my research methodological lies the Foucaultian methods of
genealogical and archaeological analysis.
However the trans-disciplinary nature of the thesis has resulted in a
style of meta-alternation, that is the
analysis of different subject matter requires different methodological frames of
reference to be adopted, especially when the focus relates to biological and
physical sciences. I have
identified a numbers of tools from science studies such as Latourian actor
network theory and those outlined by Pinch & Bijker (1987)
, namely the Empirical Programme of Relativism (EPOR) and
the Social Construction of Technology (SCOT) modes of analysis.
3.
Anomalous
bodies within Western Christian theology
Even
within the secular post-enlightenment Western tradition, communities continue to
be influenced by the legacy of Christian attitudes towards the body and
‘disability’ in particular. Some
scholars have even gone so far as to suggest that much of the hatred and
ambivalence towards people with disabilities can be placed firmed at the feet of
the churches (DeVries
1994)
. Yet despite the dominance of ‘anti-disability’ beliefs within the
Latin Churches there exists a myriad of theological perspectives about
‘disability’ providing alternative and transgressive possibilities. Much of
our ethical and social thinking has been shaped and formed by a theological
underlay. This chapter will examine
the multiple ways ‘disability’ has been represented in both scripture and
theological traditions. Texts of
terror and transgression will be identified and discussed.
As an exercise of reclamation, recent ventures into feminist and
poststructuralist thought within theology will be evaluated.
4.
Governing
‘disability’ in the spirit of the Enlightenment
4.1
The ableist sovereign subject of liberalism
A discussion of the continuities and
discontinuities of the formation of the Western self and foregoing concepts of
‘personhood’– and how these notions relate to matters of citizenship,
participation in governance and notions of perfectibility and ‘worth’.
4.2
Governing ‘Disability’
An exposition of Michel
Foucault’s notion of governmentality and the particular application of this
concept to understanding histories of ‘disability’.
4.3
Social Role Valorisation Theory, or the ‘normalisation principle’
This section discusses the theory
and practice of SRV, a human services philosophy dominant at a policy and
legislative level in the welfare state of the 1980’s through to the present
day and explores its recuperation of not only of liberalism but also ableism.
4.4
At the Threshold - Freedom and equality, the dilemma of ‘disability’
within neo-liberalism
During the 1990’s the emancipatory potential of
anti-discrimination initiatives either in the form of legislation or targeted
programme has been seriously challenged. This
is especially so given the conditionality of citizenship within liberalism.
Entrance into the polis, e.g. full personhood, is predicated upon freedom
through activity and having a ‘use value’. The question then, is how useful is a project that
articulates freedom by way of greater protections and opportunities under the
gaze of the law? The works of
Wendy Brown (1995)
, Nikolas Rose [, 1991 #47; , 1992 #468; , 1999 #467; , 1996 #451] and
Anita Silvers (1998; 1998)
are relevant here.
5.
‘Disablised
Bodies’ in Process – the Nemesis of technologies
5.1
Parameters and possibilities – philosophical excursions into technology
This section sets the scene and
introduces debates about the nature of technology, its relationship to science,
matters of ‘progress’ and actors in a network of association.
Rather than holding to a simplistic view that technologies are inherently
dangerous or implicitly beneficial, this work will attend to ways technology is
engaged, its disjunctures and constructed boundaries.
5.2
‘Disability’ meets utopianism and the romanticist turn, or a return
to the monstrous?–
Part
of the lure, the attraction to technological innovations lies in the promise of
a ‘brave new world’ wherein human traits are enhanced and ‘deficiency’
is eradicated. Such promises of
‘perfection’ (or at least the illusion of) become pertinent in the
management of ‘disability’, an ontologically negative state.
This section critically evaluates such utopic dreaming and unravels the
web of linkages that postulate such grand myopic illusions of convergent
ableism.
5.3
Disablised bodies as the ‘original’ cyborg
People
with ‘disabilities’ have often had an ambivalent relationship towards
technology, which from time immemorial has been used to reshape, enhance and
normalise our bodies. To this
extent, it could be argued that people with ‘disabilities’ as a marked group
constitute the ‘original cyborg’ due to our boundary breaching
corporealities. Various technologies to modify and morph our corporeal surfaces
such as orthotic and prosthetic devices can act as phantasmatic bodily
extensions. With the advent of new
technologies we can be less certain about the boundedness of being ‘human’.
5.4
‘Upping the ante/anti’- disablised bodies metamorphosed into the
transhuman
The
equalising tendencies of some normalising technologies may transform the bodies
of people previously designated as ‘disabled’ to a new level of being not
just merely ‘human’, but ‘transhuman’.
New technologies constantly push the limits of what it means to be
‘human’ through the increased use of enhancement technologies. As we move down the line of increasing corporeal
‘enhancements’, which purport to empower, our very concept of
‘normative’ functioning is reconfigured.
In other words, the quest for ‘morphologically free’ person, in turn
reproduces other forms of alterity, a revived monstrosity on the move.
As McGuire and McGee put it – “… as the numbers of enhanced humans
increase, today’s normal might be seen as subnormal, leading to the
medicalisation of another area of life” (Maguire
and McGee 1999: 11)
.
5.5
Whither
‘disability’: New Reproductive Technologies (NRT’s), Human Genome Project
(HGP) as a new eugenics?
Traditionally
on a global level the focus of health programs has been on the prevention of
‘disease’ and ‘disability’. The
locus of ‘disability’ has been seen as solely biological rather than
socially constructed. Historically
in the West, prevention of the ‘spread’ of ‘disability’ has in the past
been effected through eugenics policies that mandate forced mass sterilisation
of ‘at risk’ groups, miscegany laws and the termination of foetuses deemed
‘deformed’. Recent
‘enlightened’ attitudes have meant that the eugenics project has been
transmogrified into more covert strategies through the use of NRT’s/genetic
counselling and the impetus behind the HGP – all of which depend not upon
coercion but rather upon individuals regulating their own ‘choices’ to
conform with prevalent ‘best practices’.
This section will focus on the ‘new eugenics’ and ways the government
of self operates to bolster dominant notions of ableist normativity without
compromising liberalism’s flagship of freedom, choice, equality and pluralism.
5.6
‘After the fact’ -
morphing Ableism: technological applications enforcing normalcy
It
should be self-evident that it is near to impossible to eliminate
‘disability’, not only because the parameters of the ‘normal’ and
‘pathological’ are constantly shifting, but also ‘disability’ is not
created exclusively within the genetic domain. ‘Disability’ can be
‘acquired’ after birth and travails the whole life cycle.
This section critically discusses the relationship between the practices
of technologies and how they intersect with perceptions/inscriptions of
‘disability’ and ‘able-bodiedness’.
It will examine the extent to which people with disabilities desire
technologies that assist them to pass/assimilate into the ‘mainstream’ by
way of a process of morphing into ‘normalised’ corporealities.
5.6
The reining/reigning
in of ‘disability’: the birth of ‘elective disabilities’, a shuffling of
‘deckchairs’ and definitions
In
recent times, we have witnessed the emergence of an ableist logic that
postulates that should a cure or remedy exist either to compensate, correct or
eradicate a given ‘disability’ it should (unquestionably) be utilised for
the individual and ‘common good’. Indeed,
why would anyone choose to remain ‘disabled’?
Until recently the thrust of the welfare state in meeting the ‘needs’
of people with disabilities have focused upon ‘care’ and ‘compensatory’
measures. The advent of new
technologies may signal a significant shift in programme focus back to reduction
strategies. This shift coupled with
the ‘blow out’ in numbers of people classified as ‘disabled’ under
social security systems has precipitated a realignment of the continuum and
parameters of the definition of disability.
Both within Australia and the USA the definitional categories are quite
broad. However, recent moves from
the conservative side of the political spectrum have attempted to rein in and
restrict the purview of the classification of ‘disability’.
As part of this rearguard action, the concepts of ‘elective’ or
‘voluntary’ disability have emerged, especially in the USA.
In light of these developments, this section will examine the
relationship of this trend to the coercive use of normalising technologies.
6.
Desire/Dis-ease
of ‘disability’
6.1
Let’s talk about desire
The
placement of concepts such as ‘desire’ and ‘disability’ within a single
context almost appears to be an oxymoron. This
section introduces discussion of ‘desire’ within feminist and philosophical
literature and the relevance or otherwise of this concept to a consideration of
‘disability’
6.2. How far does the
dis-ease go? – Historical snapshots of torment, terror and hatred
Much of the rhetoric prevalent in
liberal rights discourses about ‘disability’ locate negative attitudes
as the primary obstacle to full integration and ‘acceptance’ into the
‘mainstream’ community. This
section presents examples from Western history that indicate a far deeper
ambivalence and/or fear of corporeally anomalous bodies. Liberalism’s
compulsion towards erasing differences through its normalising tendencies only
serves to mask the figuring of ‘disability’ in an ontologically negative
way. It is difficult to find
instances throughout history (even modern) of ‘disability’ desire or pride
– in this way we can argue that the signifier ‘disability’ becomes the ‘otherOther’
of humankind. The knowing sovereign subject/body of post-enlightenment
liberalism renders the ‘self’ of ‘disabled bodies’ beyond the realm of
civility, and as a ‘naturalised’, unthinkable object of apprehension. Part of this analysis will build on the themes of the
previous chapter in its exploration of recent ‘wrongful life/birth’ torts in
selected common law cases and broader implications of alterity.
6.3
Dreaming ‘disability’ – the
pathologisation of desire?
Dr Richard Bruno in (1997)
proposed the psychological concept of Factitious Disability Disorder
to explain the desires of people termed ‘devotees’, ‘pretenders’ and
‘wannabees’ i.e. people who desire disabilities or people with disabilities.
How reasonable is the assumption that a desire for ‘disablised’
bodies automatically connotes pathologisation on the part of the admirer?
This section moves beyond mere ‘reformist’ policies of
‘acceptance’ and ‘assimilation’ and discusses the complexities of
corporeally anomalous bodies as love objects and the kinds of dilemmas and
possibilities associated with a gaze in a different key - carnally fantasising
disability. The discussion will use the following kind of questions as a
springboard - Is it possible to
carnally fantasise about ‘disability’?
How does the desire to become a ‘disablised love object’ square with
feminism’s project of liberation? Indeed, what if our
different/missing/deviant bits/oozing fluids/states are the very source of that
desire/fetish?
6.4
‘Out and Proud’ – ‘disability culturalists’ and spectrums of
the ‘disablised’ self
In
my attempt to stimulate new and transgressive thinking about living with
‘disability’, I explore alternative ontological formulations of disability.
A small but growing number of people with disabilities are resisting the
compulsion towards ableist normativity by celebrating the experience of
‘disability’, some going so far as to proclaim the birth of a ‘disability
culture’ and reflect so-called attempts at ‘cure’.
At a phenomenological level we can reposition the gaze and speak
otherwise about insights into the lived body of individuals with
disabilities. By hearing their/our
voices and stories it becomes possible to glimpse new continuities, and
disjunctures in the organic and discursive production of bodies.
Copyright © 2000 by Fiona A Campbell. All rights reserved.
EMAIL: f.campbell@qut.edu.au
URL: https://members.tripod.com/FionaCampbell
