'Stalking Ableism: using Disability to Expose 'Abled' Narcissism',

Abstract

One may wonder what museums and classification systems have in common. They share a feature of working with the systematisation and reification of relics and objects. For too long there has been an almost indecent preoccupation with measuring and quantifying the existence of disabled people with the grand and commendable objective to know ‘us’ more. Despite these obsessions with disability, the sociocultural relations of impairment and disabled people have remained an afterthought in civic consciousness and at best peripheral in sociologies of the body. The aberrant, the anomalous, the monster or the disabled have formed ‘the background noise, as it were, the endless murmur of nature’, where disability is nonetheless always present in its absence (Foucault, 1970: 155). An act of speaking otherwise, this chapter shifts to a focus on abled(ness) to think about the production of ableism. We all live and breathe ableist logic, our bodies and minds daily become aesthetic sculptures for the projection of how we wish to be known in our attempt to exercise competency, sexiness, wholeness and an atomistic existence. It is harder to find the language and space to examine the implications of a failure to meet the standard or any ambivalence we might have about the grounds of the perfectibility project. This chapter first will outline an approach to expressing ableism (its theoretical features and character) and secondly it will provide an example of how ableism works globally in the knowledge production of disability. Finally I will discuss the possibility of disabled people turning their backs on emulating abledness as a strategy for disengagement both ontological and theoretical.

Full text

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13
Stalking Ableism: Using Disability to
Expose ‘Abled’ Narcissism
Fiona Kumari Campbell
Introduction
One may wonder what museums and classification systems have in common.
They share a feature of working with the systematisation and reification of
relics and objects. For too long there has been an almost indecent preoc-
cupation with measuring and quantifying the existence of disabled people
with the grand and commendable objective to know ‘us’ more. Despite
these obsessions with disability, the sociocultural relations of impairment
and disabled people have remained an afterthought in civic consciousness
and at best peripheral in sociologies of the body. The aberrant, the anoma-
lous, the monster or the disabled have formed ‘the background noise, as it
were, the endless murmur of nature’, where disability is nonetheless always
present in its absence (Foucault, 1970: 155). An act of speaking otherwise,
this chapter shifts to a focus on abled(ness) to think about the production
of ableism. We all live and breathe ableist logic, our bodies and minds daily
become aesthetic sculptures for the projection of how we wish to be known
in our attempt to exercise competency, sexiness, wholeness and an atomistic
existence. It is harder to find the language and space to examine the impli-
cations of a failure to meet the standard or any ambivalence we might have
about the grounds of the perfectibility project. This chapter first will outline
an approach to expressing ableism (its theoretical features and character)
and secondly it will provide an example of how ableism works globally in
the knowledge production of disability. Finally I will discuss the possibility
of disabled people turning their backs on emulating abledness as a strategy
for disengagement both ontological and theoretical.
Introducing the concept of ableism
I start our discussion by providing a brief sketch of the project of ableism (if
you want more elaboration and complexity, see Campbell, 2009). A survey
of the literature suggests that the term is often referred to in a fleeting way
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Fiona Kumari Campbell 213
with limited definitional or conceptual specificity (Clear, 1999; Iwasaki and
Mactavish, 2005). When there is commentary, ableism is described as denot-
ing an attitude that devalues or differentiates disability through the valuation
of able-bodiedness equated to normalcy (Ho, 2008). Or alternatively, ableism
calls for a presumption of able-bodiedness and as Chounaird (1997: 380) puts
it ‘ableism entails a way of being’. For some, the term ableism is used inter-
changeably with the term disablism. In my book Contours of Ableism (2009)
I note that disablism focuses on the negative treatment towards disabled peo-
ple and social policy. I argue that while this approach is commendable, it still
distorts research and policy responses. Why? Disablism is concerned with disa-
bled people as Other (those people) – Other than ‘us’. The ‘us’ is presumed to be
able-bodied – an able-bodied perspective. There may be a tendency under this
perspective to respond along the lines of what can ‘we’ do for them? There is
little consensus as to what practices and behaviours constitute ableism. Paring
it down, at its core ableism characterises impairment or disability (irrespective
of ‘type’) as inherently negative and should the opportunity present itself, to be
ameliorated, cured or indeed eliminated. Ableism refers to
a network of beliefs, processes and practices that produces a particular
kind of self and body (the corporeal standard) that is projected as the per-
fect, species-typical and therefore essential and fully human. Disability
then is cast as a diminished state of being human.
(Campbell, 2009: 5)
An ableist perspective might propose that in a democracy disabled people
should be treated fairly on the basis of toleration. Such a stance does not
however suggest that disability is considered a reasonable and an accept-
able form of diversity, or indeed that disability can be celebrated. Ableist
thinking is based on a premise where all disability, irrespective of type and
degree is assumed to be unacceptable. Disability is harmful and inter alia a
form of harm. In my work I conclude that disability is both provisional and
tentative – it is always subject to being erased if a solution comes along (cure,
correction, elimination). Ableism denotes the meaning of a healthy body, a
normal mind, how quickly we should think and the kinds of emotions that
are acceptable to express. The universal reach of reason gains potency when
coupled to a self-assured individual autonomy. Reason as truth becomes dis-
course dependent and in turn generates notions of ‘disability’ and ‘ability’
(able-bodiedness). The human (adult) subject is assumed to be an independ-
ent centre of self-consciousness, who holds autonomy to be intrinsically val-
uable. Neo-liberalism’s normative citizen in the words of C. B. Macpherson
(1964: 3) is a nominal ‘possessive individual’:
free in as much as he [sic] is proprietor of his person and capacities.
The human essence is freedom from dependence on the will of others,
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214 Stalking Ableism
and freedom is a function of possession … Society consists of relations of
exchange between proprietors (emphasis added).
This imaging of the neo-liberal subject insists that all people fit Macpherson’s
regulatory ideal. Ableism involves a degree of mastery over the mind and
body in particular ways where styles of comportment and habits are ranked.
The tool of comparison, of normativity, is the ‘benchmark man’, the nor-
mative citizen who is ‘who is invariably White, heterosexual, able-bodied,
politically conservative, and middle class’ (Thornton, 1996: 2). Of course
these characteristics then are put out as aspirational markers. These beliefs
do not take account of differences in the ways we express our emotions,
use our thinking and bodies in different cultures and in different situations.
There is pressure in modern societies, particularly in developing economies
for us to show we are always productive (doing something ‘useful’) and con-
tributing. Ableist belief values certain things as felicitous and particular sorts
of contributions. Disabled people are often seen as a burden, a problem,
a drain on the system, who make no civic contribution. According to this
understanding of ableism, ‘disability’ refers to people who do not make the
grade, are unfit in someway – and therefore are not properly human.
My first claim is that the notion of ableism is not just useful for thinking
about disability but also other forms of difference that result in marginality
or disadvantage. Theory far from being abstract can help each of us make
sense of our lived experiences and provide the tools for considering what is
‘going on’, to help us ask the critical and vital questions of contemporary
life. Interrogating ableism means thinking about what being abled means to
us today in Britain, the US, Australia, South Africa or Sri Lanka. A focus on
ableism can also unpack what is produced phenomenologically by the dis-
ability experience. The nuances of ableism are not static; they are transcate-
gorical, having specific cultural alignments with other factors such as race,
gender, sexuality and coloniality. Compulsory abledness and its conviction
to and seduction of sameness as the basis to equality claims results in a
resistance to consider peripheral lives as distinct ways of being human lest
they produce marginalisation. Pointing to difference can be quite dangerous
on a number of grounds. Differences can be reduced to the lowest common
denominator, with attributable and immutable (pigeonholing) characteris-
tics that can become signs of deviancy or delight. A call to sameness appears
to be easier as these requests galvanise and rearticulate the normative even if
such a norm is somewhat vacuous and elusive.
Often there is confusion about impairment and its relationship to social
conditions that cause poverty, distress and difficulties. An ableist disposition
makes it difficult to speak of imaginations of impairment as an animating,
affirmative modality of subjectivity (see chapters by Goodley; Roets and
Braidotti in this volume for counter ableist approaches). To speak about
disability in this different, unfamiliar way constitutes a disability offence
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Fiona Kumari Campbell 215
as disability in and of itself is offensive. Studies in ableism (‘SiA’) attempts
to shift our gaze from a disability pre-occupied minoritisation towards ableist
normativity and concentrate on what the study of disability tells us about
the production, operation and continuation of ableism which has all the
population implicated. Instead of looking directly at disability, ‘SiA’’’ focuses
on how the able, able-bodied, non-disabled identity is maintained. The
direction is to examine elements of what is presented as ‘normal’ or aspira-
tional. This approach not only rethinks disability, it provides a platform for
reconsidering the way we think about all bodies and mentalities within the
parameters of nature/culture. ‘SiA’ as a field of enquiry is concerned with the
processes and effects of notions of normalcy and anomaly (disability).
The building blocks of ableism
The formation of an ableist epistemology occurs on the basis of relation-
ships shaped by binaries that are mutually constitutive. For example
I propose that it is not possible to have a fully inclusive notion of ‘health’
without a carefully contained understanding of not-health (we call this
disability or sometimes chronic illness). Central to a system of ableism are
two elements, namely, the notion of the normative (and normal individual)
and the enforcement of a divide between a so-called perfected or developed
humanity (how humans are supposedly meant to be) and the aberrant, the
unthinkable, underdeveloped and therefore not really-human. The ableist
divide can also capture asymmetrical relations based on differences of sex
and (not white) race, which in different ways, in epistemology and social
practices have been constituted as sites of aberrancy or disability. There are
two features that produce ableism relations:
(1) The idea of normal (normative individual);
(2) A constitutional divide – a division enforced between the ‘normal’ =
human and the aberrant (sometimes pathological) = subhuman.
What Normal? While it might be easy to speculate about the kinds of peo-
ple that may be regarded as disabled and their interior life, when thinking
about the essential aspects pertaining to able-bodiedness, this task becomes
difficult and elusive. Being able-bodied is always relational to that which is
considered its opposite, whereas disability involves assigning labels to bod-
ies and mentalities outside the norm. With the development of enhance-
ment technologies (cosmetic neurology and surgery for instance) the notion
of the norm is constantly sliding, maybe creating a larger pool of ‘abnormal’
persons who because of ‘choice’ or limited resources cannot improve them-
selves and hence lapse into deficiency. Disabled people have not yet estab-
lished their entitlement to exist unconditionally as disabled people. This
ambivalent status means it is less certain whether we could regard disabled
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216 Stalking Ableism
people’s lives as grievable or merely dispensable, a form of collateral damage
in the pursuit of progress (cf. Butler, 2009).
There are many people in the disability services field and working in uni-
versities who, if pushed, hold this view. It is assumed that disability always
equals suffering. If disabled people suffer, people think it is related to impair-
ment and not other issues like lack of support and belongingness. It is not
surprising that we receive mixed messages about disability – ‘be kind and
nice to the disabled! … but there is no real right to exist, and how dare you
be happy because of your disability and not in spite of it’. In fact the catchcry
of an ableist denotation of disability is captured in that famous song ‘We
shall overcome’! Impairment is the foreign invader, an injury or parasite
that represses the authentic self – no wonder many seek non- envelopment
and are encouraged to partition impairment from the rest of our relevant
selves. A counter-ableist version of impairment might explore what the
experience of impairment produces and ask how does disability productively
colour our lives? I am getting ahead of myself, let us return to the key fea-
tures of ableism.
The second feature is a constitutional divide between the normal and patho-
logical. Many readers will know of this even if they have not up until now had
a name for it or find the language of constitutions a bit bristly. Constitutions
are related to the structure or attributes of an entity which shapes a charac-
terisation. It is a division that requires people to identify with a category – ‘are
you disabled or not?’ ‘Oh, no I am not disabled, I am ill or depressed!’, ‘I am
able-bodied as I can do things’, please ‘tick the box’ say governments. For the
ease of conversation we often feel the need to minimise any confusion. In tra-
ditional research design classes, students are encouraged to produce research
that is coherent and has clarity about where people fit (participant sampling).
I have a hunch that you as the reader already know that such a clear divide
is blatant propaganda that supports the argument developed by the philoso-
pher Bruno Latour (1993: 10–11) who states, ‘these two independent prac-
tices of normalising and pathologising … must remain distinct in order for
them to work/function.’ If the definitions of abled-bodied and disabled become
unclear or slippery, the business of legal and governmental administration
would have problems functioning. Alarm would arise due to uncertainty as
to how to classify certain people and in which category. Clarification of this
perceived ‘uncertainty’ is achieved through a division called purification, the
marking of distinct archetypes. Ableism assists in the government of disabil-
ity ensuring that populations that appear dis-ordered (maybe even causing
social disorder) become ordered, mapped and distinct. Purification is essential
to be able to count populations even if this counting and classifying does not
reflect and in fact distorts reality (Altman, 2001). As impairment effects are
relational, disability is not always present in the environment and within the
realm of an individual’s subjectivity. This division will be discussed later on
in the chapter when I look at geodisability knowledge.
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Fiona Kumari Campbell 217
Turning to the realm of tacit knowledge gained from social relations, the
second aspect to enforcing a constitutional divide is translation. Let us take a
look at this. No human is self-contained and our lives are constantly chang-
ing and (trans)formed through the context in which we move. Humans are
endowed by their relations with technologies (cars, clothing, implements,
time, communications devices, prosthesis and drugs etc.). Relations between
human and non-human entities (actors) are already hybridised and made up
of changeable aspects. Our relationship to context (people, environments,
mental and bodily changes) means that human typologies are endless and
shifting (Goodley, 2007). The character of impairment can change through
interfaces with behaviour modifying drugs and the use of apparatus (speech,
hearing and mobility enhancing). Most of us rarely fit into the definitive
classifications of purification – yet such confusion or ‘grey zones’ of daily
life are neatened up into zones of distinction ~ he is ‘this’ and she is ‘that’.
Enshrined in ableism is a metaphysical system which feeds into an ethics of
disability. A critical question to be asked is what is the nature of the ethics
or ethos invoked by ableist practices? Does ableism produce a form of nar-
cissism in the disabled person or are ableist practices themselves essentially
narcissistic?
Ableism ~ a characterological narcissism?
Siebers (2008) and Davis (2002) furnish a discussion about the ways that psy-
chosocial theories of narcissism have been used as a form of individualised
victim-blaming of disabled people. Without rehashing their material, a psy-
chology of narcissism asserts that disabled people are exemplary narcissists.
In not being able to be cured, disabled people turn away from love of others
towards themselves in a neurotic, disengaged form of self-gratification. Such
a view reached its zenith in Australia in the professional indemnity insur-
ance crisis of 2003–4, where ‘high’ disability compensation payouts were
blamed for the collapse of a major insurer (Mendelson, 2008). This theory
of narcissism would appear to conflict with emerging research around the
experiences of disabled people and internalised ableism which suggests that
there are extraordinary attempts at engagement with the abled ‘Other’ and
high degrees of precariousness around self-approval (Campbell, 2008; Reeve,
2006). Critics of identity politics and disability studies argue that ‘identity
politics promotes a rage that threatens the social order’ (Siebers, 2008: 44).
Yet as I have argued, it is the processes of ableism that produce the reified
category of disability and ontological difference! Indeed ableist narcissism
can desubjectivise, by reducing the human to a mere organic state, func-
tional, pliable and improvable (Hourigan, 2010). In this chapter I propose
an inversion of that traditional understanding of disability’s relationship to
narcissism. Ableism as a mentality and as a practice is inherently narcissist.
As a practice, ableism demands an unbridled form of individualism that is
pre-occupied with self-improvement and corporeal enhancement. Ableist
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218 Stalking Ableism
normativity (the view that assumes the preferability of abledness) demands
entitlement to premium social and economic spaces and loud histories. ‘SiA’
I argue are a value-addition to the field of critical disability studies.
Reframing our study from disability to ableism prompts different preoccu-
pations: what does the study of the politics of ‘deafness’ tell us about what it
means to be ‘hearing’? Indeed how is the very conceptualisation of ‘hearing’
framed in the light of discourses of ‘deafness’? In law the juridical notion
of sanity depends upon a delimitation of the ‘insane’, ‘unfit’ and ‘incompe-
tent’. A reframing of the question may expose underlying presuppositions
about the grounds of pathology, reasonableness and mentality. By decen-
tring abledness, it is possible to ‘to look at the world from the inside out)’
(Linton, 1998: 13) and unveil the ‘non-disabled/ableist’ stance. And in doing
this act of inversion ableism ‘loses its crucial position as a pre-condition of
vision and becomes the object of scrutiny’ (Haraway, 1989: 152). Developed
from within the field of critical disability studies as well as broader insights
drawn from gender studies and critical race theory, ‘SiA’ examines the ways
that concepts of well-beingness and deficiency circulate throughout society
and impact upon economic, social, legal and ethical choices.
SiA are not about the study of ‘ability’ which is held in a binary relation-
ship with ‘inability’, rather we are concerned with the more productive
nuance – abledness as a constitutive centre. This orientation foregrounds the
limits of tolerance and hence the creation of objectionable lives that reside
outside the bounds of society, becoming outlaw disabilities. Ultimately ‘SiA’
is also an attempt to build a new home, to make room by crafting a territory
that is antithetical to ableist normativities. We could propose that the world
extends the form of some bodies and mentalities more than others, and
such bodies/mentalities in turn feel at home in the world. Before moving
on this potential new reality, I want to show one of the ways that ableness
operates more globally in the push for a universal definition of disability and
disability coding – what I have termed geodisability knowledge. I will not be
covering geohealth concepts in this chapter but refer the reader to Gregor
Wolbring’s (2006) piece. In the next section I move to discuss how ableism
works in the global mapping of disability knowledge.
Geodisability knowledge
Geodisability knowledge acts a bit like the McDonalds™ strategy – just as
there are documents, devices and drilled people all around the globe who
know how to prepare and deliver a tasty BigMac™ hamburger, geodisability
knowledge acts as the landscape for thinking about disability and shapes
the flows of consciousness around vitality. With the ICD-10 (International
Classification of Disease 10) and ICF (International Classification of Functioning,
Disability and Health) – disability collectors can visit services and assess fund-
ing applications around the globe and believe that there is an operational
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Fiona Kumari Campbell 219
clarity about the populations they are dealing with and the kinds of quality
of life outcomes they can expect in supra culture and context. The argument
of enumeratists and actuarialists is that systematisation will assist in social
planning. This will only work however if disability is reduced to its lowest
common denominator (Altman, 2001), resembling what I would call a ‘skel-
etal model’ where embodiment (flesh, memory, circumstances) are deflayed
and peeled off to reveal a definitive cripped (disabled) essence. In terms of
negative production, purification sharpens the divide of exclusion by forcing
different bodies and mentalities to adopt emulative compartmentalisation
and then to explain the reality of their daily experiences from within that
categorical prism.
Foucault’s early work on the panopticonal gaze whereby ‘inspection
functions ceaselessly [and …] the gaze is alert everywhere’ (1977: 195) is
invoked in nodes of geodisability structures of systemisation and measure-
ment. Without seeking to review the extensive studies of panopticism, it
is important to summarise its key features. Jeremy Bentham’s proposal for
penal management in the form of a panopticon an architectural design
for the surveillance and observation of prisoners has had long-ranging
consequences for institutional monitoring at the local and global level. For
Foucault the panopticon became a motif, a genealogical marker for order-
ing socio-material realities. The panopticon is a space not just of visibility
through strategic gaze or scrutiny, but its space is ordered to produce norms
and geoprofiles, for example hospital space, client areas, high security zones,
silent spaces, international waters and airspace. The panopticon can be
described as a type of socio-material assemblage for grouping and arranging
social categories. Today the individual is compelled both individually and
collectively, to attune and align themselves into observable, streamlineable
and thus countable data. A good citizen is one that can be easily counted
and their lives reducible to statistical aggregates and coded nuances. A more
obtuse example is the French conceptualisation of disability as ‘situation of
disability’ (handicap de situation). This idea bears witness to certain aspects
of impairment that arise and then decline relationally and in situational
contexts (Winance, Ville and Ravaud, 2007).
Geopolitical scrutiny does not need to be localised and is in effect trans-
spatial. Governing from a distance (be it Geneva or New York) operates
through two discursive modalities. One modality is denotative – a carto-
graphical description of a particular spatial zone (our interest is in the
mapping of ableist zones of ‘health’ and ‘not-health’). The second modality
forms an authoritative atonement, a discursive canon (such as international
disability norms and conventions) which constructs and enacts founda-
tional and thus sayable ‘statements’ (e.g ‘who’ is legally a ‘disabled person’)
to guide policy formulation. United Nations (hereafter known as UN)-based
international norm standard setting, in the form of geodisability knowledge
production, is a form of panopticonism. The institutional strategic gaze,
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220 Stalking Ableism
situated in the UN, is able to examine, normalise and condition nation
states and cultures. International disability norm standard setting is repre-
sented as a system formulated by consensus, being transcultural (therefore
detached) and objective. But knowledge formation by international con-
sensus building is not a level playing field. As Connell (2007) argues non-
Western approaches are not taken seriously enough to rupture the colonial
experience.
The pre-eminent apparatus controlling the delimitation of disability origi-
nates with the UN. Without consensual international disability norms, it
would not be possible to disclose and make visible the dynamics of disability
at a country level and for the World Health Organization (hereafter known
as ‘WHO’) to map disability globally. The ‘seeing’ of disability, it is argued,
enables a surveillance both globally (of each country) and individually (eve-
rybody is surveilled for conformity). While it is beyond the confines of this
chapter to have a thoroughgoing discussion of the government of disability
globally, it is pertinent to outline a number of salient definitional instru-
ments that are mandated for use by UN member nations.
UN formations of disability are deeply embedded with a broader nosology
of disease (see ICD-10), which delimits disability in relation to a so-called
objective comparator referred to as health status (i.e. a person without a
health condition). The new ICF formulation, while being cognizant of the
‘participatory’ and ‘contextual’ dimensions of ‘disability’, continues to be
constitutionally aligned with and thus becomes a sub-directory of the ICD-
10. This is an instance of enframing as the partitioning of ‘disability’ and
‘not-disability’ can obscure cultural differences around health and aberrancy.
In January 2001, the 54th World Health Assembly adopted the International
Classification of Functioning, Disability and Health (ICF). The new system
inaugurated four dimensions related to disability: impairment, activity,
participation and context. The instrument’s authors argue that the aim of
the ICF was to develop a common language for speaking of ‘health’ and by
default ‘disability’ (World Health Organization, 1992–4: 1–4). Moreover, the
ICF provides the basis and tool for implementing various UN instruments by
member states and enacting coherent national legislation. Without the ICF,
the networked nodes of governance would have difficulty crossing borders
and as such acts as a boundary object. The epistemological framework of
the ICF has been adopted by a majority of the world’s national governments
and has shaped the domestic scene in terms of definitions and assessment
instruments contained in legislation, social policy and the very semantics of
disability (what is sayable and unsayable).
Advocates of global geodisability templates argue that universal systems
can be used to bring ‘into line’ renegade nation states that do not appropri-
ately plan for the needs of disabled people. We may ask what approaches to
disablement are ‘renegade’? What is the authoritative criterion and authori-
tative body? In the event of any contestations over the weighting of various
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Fiona Kumari Campbell 221
elements, this framing within a disease paradigm most likely ensures that
etiological factors remain pre-eminent and the social context eclipsed. In
the mental health arena, mental health is described by WHO along the lines
of coping with the ‘normal stresses of life’. But as Fernandopulle, Thalagala
and Barraclough (2002) point out, the notion of normalcy in the Sri Lankan
context explodes given the almost normalised extra stress of living with 25
years of inter-ethnic conflict and war.
Among the major outcomes of the Decade of Disabled Persons was the
adoption, by the General Assembly, of the Standard Rules on the Equalization
of Opportunities for Persons with Disabilities in 1993. While the Standard Rules
are not legally binding, they ‘represent a strong moral and political commitment
of Governments to take action to attain equalization of opportunities for
persons with disabilities. The rules serve as an instrument for policy-making
and as a basis for technical and economic cooperation’ (UN, Division for
Social Policy and Development, 2003–4, my emphasis). Member states
are required to adopt legislative reforms in conformity with these rules.
These instruments have come about through years of vigorous activism.
A recent tool of governance is the 2006 Convention on the Rights of Persons
with Disabilities. The strength of the Convention is that its formulation
of disability transcends functional and medical orientation of traditional
disability models. The Preamble states:
Disability is an evolving concept and that disability results from the interac-
tion between persons with impairments and attitudinal and environmen-
tal barriers that hinders their full and effective participation in society on
an equal basis with others.
(Convention on the Rights of Persons with Disabilities,
6 December 2006, at [e], my emphasis)
Article 1 of the Convention goes on to list the more usual type of func-
tional and classificatory approaches to disability, yet there is room to even
interpret these categories through the lens of an intercultural understanding
as made possible through the emphasis of the Convention’s Preamble. The
impact of countries in the Global South in their disability affairs is uncer-
tain. The Convention might stimulate debate and change around disability
or alternatively impose little understood legal standards and obligations.
An alternate reading of international norms is to interpret geodisability
knowledge as a mechanism to naturalise hegemonic ways of seeing (know-
ing), citing (summoning and hailing) and situating (localising) disability and
thus an attempt to codify unruly forms of impairment differences. Of course
increased geosurveillance can be associated with growing global concerns
about risk and dangerousness. In Foucault’s exposition of governmentality,
there is recognition that the craft of welfare requires that individual iden-
tity concur and be formed within the matrix of administrative structures in
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222 Stalking Ableism
society. This notion of governmentality moves beyond a liberal preoccupa-
tion with affairs of sovereignty at the level of nation states to focusing on
the personal level of subjectivity and the formation of self. Geodisability
knowledge in its attempt at universalisation moves away from the lived
experiences of disability and becomes of meta-ascription of impairment,
a cache of disability anywhere.
Escobar points out the erasure of ‘place’ and localised particularities have
been foundational to Western epistemology since the time of Plato. The
consequences are that space ‘had to be dissociated from the bodies that
occupy it and from the particularities that these bodies lent to the places
they inhabit’ (Escobar, 2001: 143). I argue that the move to enacting univer-
salised geodisability knowledge production is a major modality for govern-
ing disability that places disability out-of-space, or in outer space, despite
the implicit situation-specific creation and living of impairment. The outer
space often has a similar aesthetic about it irrespective of geography – all
hospital and care homes look alike right down to the uniforms and paint
colour – in other words they could by anyplace, any where. The emptying of
space means that disability can be anywhere; geopositioning does not really
matter. The invention of disability occurs in the local and embodied notion
of ‘place’ – in the distinctions made between health, not-health, disability,
demonisation and so on. The following section of the chapter attempts to
take disability and disabled beingness to another place away from the narcis-
sism of ableism and the argy-bargy of the international scene.
Antisociality: Rupturing ableist hegemony
[For liminal subjects] … style is both the sign of their exclusion and the
mode by which they survive nonetheless.
(Halberstam, 2005: 153)
Difference can be a vexed issue even within modern liberal societies. The
tendency for many people is still to emulate or at least appear to refashion
normative ways of being. Much of the intellectual traffic for the rethinking
of disability in terms of anti-sociality has emerged through debates about
the merits of social inclusion and liberal notions of equality and resilience
strategies to break the abled stranglehold. Legal theorists like Ruth Colker
who argues that anti-subordination rather than integration should be the
measure of equality are the exception (Colker, 2006). There is limited work
within disability studies, especially in approaches influenced by the social
model of disability or social role valorisation theory, that take a trans-integra-
tion or post-normalisation perspective. What if we turned our backs on ‘fitting
in’ – what would be the opportunities, the consequences and maybe dangers, to
give ‘attention to the lived intricacies of embodiment offer[ing] alternatives
to normalization efforts aimed at homogenizing social outsiders (Snyder &
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Fiona Kumari Campbell 223
Mitchell, 2010, 113)’? For this imaginative undertaking it is necessary to
turn to the theoretical work by other ‘outsider’ groups – queer theorists.
Spearheading the critique of the ‘different but same’ stance of social justice
formulations are ‘anti-social’ queer theorists (Bersani, 1986, 1996; Edelman,
2004; Halberstam, 2005, 2008; Muñoz, 2007). This section will outline some
of the conceptual drivers of the anti-social argument and their adoption for
developing an anti-sociality posture of disability.
Leo Bersani’s seminal work (1986, 1996) formulated an anti-social, nega-
tive and anti-relational theory of sexuality. These works along with the
writings of Edelman (2004), Halberstam (2005, 2008) and Muñoz (2007) set
the stage for the decoupling of queer marginality from the liberal projects of
tolerance and social inclusion. Before moving into a consideration of how
certain conceptual renderings may be applied to the disability situation, it
is useful to familiarise ourselves with how the neologism queer is understood
by anti-social theorists. Lee Edelman’s No Future: Queer Theory and the Death
Drive does not indicate the parameters of queer, but concludes that ‘queerness
can never define an identity; it can only ever disturb one’ (2004: 17). Queer,
while originating from the purview of diverse sexualities, easily extends to
other kindred forms of ontological and corporeal aberrancies and ambigui-
ties (such as disability). So it is right for Halberstam (2005: 6) to embrace a
more elastic connotation of queer which refers to ‘non-normative logics and
organizations of community, sexual identity, embodiment and activity in
space and time’. From this reckoning, the disabled person is already queered.
Queer, then is antitheoretical to the regime of ableist translation.
In a world that makes claims to integrity using the argument based on
equality as sameness (we are normal, we are everyday people), it would seem
a bit bold or offensive to suggest that people with disability are different from
the run-of-mill ableist norm emulators. Ahmed (2006) points to an alternate
prism, a ‘migrant orientation’ to capture a disorientation faced by queer folk
which I extend to include disabled people. The disorientation, a form of radi-
cal estrangement propels a lived experience of facing at least two directions:
towards a home that has been lost (the desire to emulate ableist norms), and
to a place that is not yet home. Regimes of ableism have produced a depth
of disability negation that reaches into the caverns of collective subjectivity
to the extent that disability negativity is seen as a ‘naturalized’ reaction to an
aberration. Not negating queerness or disability can cultivate alternate kinds
of liberty that de-identify with the rhetoric of social inclusion.
A key marker of the anti-social turn is temporality – contemporarity and
futurity – an explication of the current marginal stance and the vision for
future. It is this orientation of predicament and utopianism that can speak
to the disability realm. For disability, utopianism is a conflicted zone – there
is no future existence, disability dreaming is expunged and the utopian drive
is a device for promise (of curability), hence extinction of the impairment
state. Jose Esteban Muñoz (2007: 453) in speculating about the absence of
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224 Stalking Ableism
a queer imagination elicits a desire to engage in a queer horizon, a utopian
hermeneutics where re-imagining futurity requires that ‘the not quite con-
scious is the realm of potentiality that must be called upon’. The distance
between imagination and potentiality means that ‘queerness is not quite
here’. Our imaginations are not yet exhausted. Muñoz explains:
to argue that we are not quite queer yet, that queerness, what we will
know as queerness, does not yet exist. I suggest that holding queerness, in
a sort of ontologically humble state, under a conceptual grid wherein we
do not claim to always already know queerness in the world, potentially
staves off the ossifying effects of neoliberal ideology.
(Muñoz, 2007: 454)
How does an alternative horizon for disabled people come to be formu-
lated? Living in the now and not yet, as outsiders, not quite inside, requires
a disposition or habit of contemporariness. Contemporariness signifies a
relationship with the present but also a distance, a critical space from it. As
Agamben explains:
Those who are truly contemporary, who truly belong to their time, are
those who neither perfectly coincide with it nor adjust themselves to
its demands. They are in this sense irrelevant [inattuale]. But precisely
because of this condition, precisely through this disconnection and this
anachronism, they are more capable than others of perceiving and grasp-
ing their own time.
(2009: 40)
Disabled people are called to live as contemporaries. The queering or crip-
ping of contemporariness is the grasping and holding tight to ambivalence
and obscurity so fundamental to the alternate lifestyle which is obtained
through fixing the gaze not on our era’s light but the underbelly, or in
Agamben’s language ‘darkness’ – which shines into the staree. In this sense,
the contemporary queered and cripped person, in touching an elusive
imaginary, sees the now and the emergent not as a death drive, but in terms
of unlivedness:
The present is nothing other than this unlived element in everything
that is lived. That which impedes access to the present is precisely the
mass of what for some reason … we have not managed to live. The atten-
tion to this ‘unlived’ is the life of the contemporary.
(Agamben, 2009: 51)
The matter of re-imagining a disability or cripped horizon, a future with-
out the stain of ableism, although elusive and out of grasp, is nonetheless
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Fiona Kumari Campbell 225
fundamental in order to move to hopefulness and capture that unlived pos-
sibility in the lives of many with disability. Can the so-called shadows of a
disabled life be sites of invigoration? What is ‘unlived’ in our lives? Crippin’
the human involves a differential gaze – where sometimes signs and ges-
tures predominate, where there is a different mind style such as Tourette’s
syndrome or autism, or a centring on visuality or tactility. A grounded
earthiness can be ‘different’ through echolocation and waist heighted-
ness. Halberstam (2008) speaks of acts of unbecoming. Through what she
describes as ‘wilfully eccentric modes of being’, it is worth conjuring and
queering concepts of passivity held against disabled people, as a refusal to
live up to ableist expectations of performativity:
[I]n a performance of radical passivity, we witness the willingness of the
subject to actually come undone, to dramatise unbecoming for the other
so that the viewer does not have to witness unbecoming as a function of
her own body.
(Halberstam, 2008: 151)
This radical passivity, for disabled people, would indeed have to be radical, as
disabled people already live under the enormous weight of being character-
ised as passive. It is a tough ask to claw back and produce a cripped notion of
passivity. Sunny Taylor does this in her quest for the right not to work:
I have a confession to make: I do not work. I am on SSI [social security
benefit]. I have very little work value (if any), and I am a drain on our
country’s welfare system. I have another confession to make: I do not
think this is wrong, and to be honest, I am very happy not working.
Instead I spend the majority of my time doing the activity I find the most
rewarding and valuable, painting.
(Taylor, 2004: 30)
Such strange temporalities, imaginative life schedules present alternative
temporalities which disability studies scholars have all along known, disrupt
the parameters of the human (Halberstam, 2005; Campbell, 2009; McRuer,
2006). Having said this, it is all the more extraordinary that disabled people
have not yielded to this repression but have resisted docility and engaged
in transgressive ways of living disability. Ableism is founded on a utopian
hermeneutics of the desirable and the disgusting and therefore it is, as
Halberstam (2008: 153) puts it, necessary to inculcate alternative political
imaginaries. McRuer (2008) drew my attention to the way Halberstam’s per-
spective can incorporate disability as also outside the lifecycle:
I try to use the concept of queer time to make clear how respectability,
and notions of the normal on which it depends, may be upheld by
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226 Stalking Ableism
a middle-class logic of reproductive temporality. And so, in Western
cultures, we chart the emergence of the adult from the dangerous and
unruly period of adolescence as a desired process of maturation; and
we create longevity as the most desirable future, applaud the pursuit of
long life (under any circumstances), and pathologize modes of living
that show little or no concern for longevity. Within the life cycle of the
Western human subject, long periods of stability are considered to be
desirable, and people who live in rapid bursts (drug addicts, for example)
are characterized as immature and even dangerous.
(Halberstam, 2005: 4–5)
Cripped time can be staggered, frenzied, coded, meandering and be the dis-
tance between two events. Some of our time is shaped according to another’s
doing – service time – the segmenting and waiting on assistive agencies. Aside
from service time, there is a transient time whereby our cripped selves rub
up against biology, environmental barriers and relationality. Like queerness,
the lifecycle refuses patterning – there is a different vision with localised
goals. Instead of proposing argument based on normalisation and similar-
ity to the heteronormative (and by extension ableist normativity), Edelman
(2004) proposes a politics of negativity, on the basis that queers, as outsid-
ers, are embodied differently having counter-intuitive, queered forms of
negative knowing (Halberstam, 2008: 141). Edelman implores queers to be
norm resisters, to come out from normative shadows and fess up to futurist
‘inability’: ‘instead of fighting this characterization by dragging queerness
into recognition, he proposes that we embrace the negativity’ (Halberstam,
2008: 141). Relinquishing the norm as a lost cause enables an outlaw flower-
ing of beingness that is anti-social.
Disability as perverse and anti-social
The disabled life puts out fear and possibility. This is a conflict over limi-
nality that many disabled people experience. How does the person with a
disability negotiate the expectations and compulsions of ableism? In other
words, do they choose to conform to or hypermimic ableism or do they go it
alone and explore alternative ways of being? People with impairments have
impairment – mediated proprioceptive ways of experiencing being in the
world. In contrast there is the unspeakability of communality and commo-
nality where disabled people can, as Overboe does in his spasms ‘give [him]
great joy… [becoming] a life-affirming presence’ (2007, 221). Elsewhere I
have argued that disabled people ‘are in effect strangers in ableist home-
lands – who because of their strangeness have the possibility of a new vision
or orientation’ (Campbell, 2009: 161).
Reading ‘disability’ in a positive (anti-social) light requires an apriori nego-
tiation with what Foucault (1976) refers to as the effects of the ‘implantation
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Fiona Kumari Campbell 227
of perversions’, the consolidation of erratic desiring. Foucault’s’ thinking
about desire suggests that a desire towards emulation of the ableist subject
mitigates against the development of an anti-social framing of disability
outside the realms of the perverse. The challenge then is to take up these
‘implantation of perversions’, to develop as Foucault puts it ‘the thought of
the outside’, a thought at the queer margins:
A thought that stands outside subjectivity, setting its limits as though
from within, articulating its end, making its dispersion shine forth, tak-
ing in only its invincible absence; and that, at the same time, stands at
the threshold of all positivity, not in order to grasp its foundations or
justification but in order to regain the space of its unfolding, the void
serving as its site, the distance in which it is constituted and into which
its immediate certainties slip the moment they are glimpsed.
(1998, Orig 1966: 150)
Slippages in certainties do create precariousness but also the possibility to
(re)imagine the circumstances of disability. It is in between these conflicted
traces of subjectivity that the perverse inkling of anti-social disability, an
outlaw ontology, lurks. For Foucault, ‘the thought of the outside’ contains
a double imperative: (negative) desire reaches into our (disabled) interiority,
the emptiness, and the state of be-ing outside: ‘the fact that one is irreme-
diably outside the outside … infinitely unfold[ing] outside any enclosure’
(Foucault, 1998: 154). Director Hara Kazuo’s 1972 film Goodbye CP, a stark
black and white portrayal of Green Lawn, a Japanese activist group of peo-
ple with cerebral palsy, includes a scene where the central character Yokota
Hiroshi who walks on his knees because it is faster than a wheelchair is fol-
lowed, in handing out leaflets. Hiroshi remarks:
I walk slow and look pathetic. What’s wrong with that? ... We are outsid-
ers. We really are. We can never be insiders. Those who think they are
insiders may end up being outsiders. Why don’t they realize that? That’s
the point we are trying to make.
(Hiroshi, in Kazuo, 1972)
Foucault is correct that we can never really ‘know’ the outside, the limi-
nal margins because its ‘essence’ remains inherently unknowable and
ambiguous. To step outside the normative trajectories of negativity not
only destabilises the conception of disability, but also confuses and disrupts
the processes of subjectification by confronting the ‘goodness’ of disability.
Hiroshi is emblematic of the anti-sociality stance of disability. Such an act
is subversive as Hiroshi positions his impaired body as queered and per-
verse. He is perverse because Hiroshi in effect does not ‘give a damn’ about
presumed appearances – he is his own man in his embrace of outsiderness.
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228 Stalking Ableism
I propose that at an ontological level the disabled body as a body is perverse;
it is in effect anti-social in its departure from ableist normativity. A word
of caution, in rejecting norm emulation the anti-social body still exists
and lives under normative shadows. Anti-sociality can be about being on
guard, reminding of, removing, resisting and rectifying the consequences
of ableism.
Conclusion
SiA are an approach within disability studies that can provide a mecha-
nism for interrogating the premises that underpin the notion of abledness.
A focus on abledness can help expose the different kinds of beingness for
more typical bodies and mentalities. In stalking ableism, it is possible to gen-
erate new kinds of research around ways people are enabled and prohibited
in their internalisation of an ableist ethos. In this chapter I have introduced
some of the core theoretical ideas underpinning the notion of and operation
of ableist thought and practices. I have used as an example the emergence
of geodisability knowledge, a system to systematise and stabilise not only
disability figurings but ultimately a belief in a universal teleological system
of species-typical functioning. In the final part of the chapter I present a
sample counterpoint to ableism, namely anti-social or negative relational
theory. Refuting an ableist narcissist preoccupation with perfection can pave
the way for more work on natality, flourishing and beauty where the human
continuum is more processional and relational.
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