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Enacting disability: how can science and technology studies inform disability studies?



This paper aims to discuss how science and technology studies (STS) can inform disability studies and challenge dominant approaches, such as the medical and the social models, in the ordering and representation of disability. Disability studies and STS have followed somewhat parallel paths in the history of ideas. From a positivist approach to their research objects to a strong social constructivism, both disciplines have moved to postmodern conceptualisations of science, technology and disability. In the same manner, this paper brings the conceptual vocabulary of actor-network theory (ANT) to the field of disability studies. ANT enables the ordering of disability as a simultaneous biological, material and semiotic phenomenon. The focus of the analysis shifts from merely defining disability as an impairment, handicap, or social construction (epistemology) to how disability is experienced and enacted in everyday practices, in policy-making, in the body, and in the built environment (ontology). This adoption of an ontological approach to disability allows the analysis to not only discuss how disability is done, but also to follow how disability groups and carriers of disability expertise and experience intervene in policy-making by developing ‘research in the wild’ and confronting scientific experts in different fora (ontological politics).
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Enacting disability: how can science
and technology studies inform disability
Vasilis Galis a
a The Department of Thematic Studies – Technology and Social
Change, University of Linköping, Linköping, Sweden
Available online: 16 Nov 2011
To cite this article: Vasilis Galis (2011): Enacting disability: how can science and technology studies
inform disability studies?, Disability & Society, 26:7, 825-838
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Enacting disability: how can science and technology studies
inform disability studies?
Vasilis Galis*
The Department of Thematic Studies Technology and Social Change, University of
Linköping, Linköping, Sweden
(Received 4 May 2010; nal version received 5 October 2010)
This paper aims to discuss how science and technology studies (STS) can inform
disability studies and challenge dominant approaches, such as the medical and
the social models, in the ordering and representation of disability. Disability stud-
ies and STS have followed somewhat parallel paths in the history of ideas. From
a positivist approach to their research objects to a strong social constructivism,
both disciplines have moved to postmodern conceptualisations of science, tech-
nology and disability. In the same manner, this paper brings the conceptual
vocabulary of actor-network theory (ANT) to the eld of disability studies. ANT
enables the ordering of disability as a simultaneous biological, material and semi-
otic phenomenon. The focus of the analysis shifts from merely dening disability
as an impairment, handicap, or social construction (epistemology) to how disabil-
ity is experienced and enacted in everyday practices, in policy-making, in the
body, and in the built environment (ontology). This adoption of an ontological
approach to disability allows the analysis to not only discuss how disability is
done, but also to follow how disability groups and carriers of disability expertise
and experience intervene in policy-making by developing research in the wild
and confronting scientic experts in different fora (ontological politics).
Keywords: actor-network theory; postmodernism; body; materiality; social
constructivism; medical model; social model; research in the wild; hybrid forums
Points of interest
Instead of solely examining the physical aspect of disability or removing
entirely the focus from the body, this article introduces a theoretical vocabu-
lary that allows disability theorists to deconstruct ableist science and technol-
ogy and integrate the politics of reality (including the bodily experience) in
the social analysis of disability.
The theoretical discussion on actor-network theory reported here challenges
dominant conceptual models such as the medical and the social models.
The article removes the focus from interpretative approaches of what disabil-
ity is and shifts the sociological analysis to how disability is created through
different interacting practices between the impaired body, the built environ-
ment and policy-making.
Disability & SocietyAquatic Insects
Vol. 26, No. 7, December 2011, 825838
ISSN 0968-7599 print/ISSN 1360-0508 online
Ó2011 Taylor & Francis
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The article proposes a theoretical vocabulary that follows the work of disabil-
ity organisations in policy-making spheres where disabled people have the
opportunity to participate in the conguration of social policies, the design of
infrastructure, and democratic institutions.
After prolonged neglect, disability has become the subject of increasing attention
among science and technology studies (STS) scholars (Moser 2000, 2003, 2005,
2006, 2009; Galis 2006; Winance 2006; Diedrich 2005). Drawing on Corker and
Shakespeares assertion that the global experience of disability is too complex to be
rendered within one unitary model or set of ideas (2002, 15), the topic of this paper
is how STS can inform disability studies in the ordering of disability and the repre-
sentation of disability issues in different techno-scientic forums. I will review
works that straddle the border of these distinct elds and their critics, and propose
an alternative conceptual reasoning for the ordering of disability. This alternative is
marked by a shift from medical or social constructions of disability to how disabil-
ity is done within various practices and through different experiences. Special focus
will be given to simultaneous relationships between material, semiotic and biologi-
cal entities. This kind of material semiotic approach is poorly represented in the
ordering of disability (cf. Moser 2006, 375), while most accessibility studies,
despite their important role as policy evaluation/critique, have limited theoretical
signicance (Gleeson 2001, 252). As I will show, the dominant conceptual models
of disability have produced distinct dichotomies between the body, and semiotic
and material entities.
The introduction of the social model of disability in the early 1970s set the
ground for a materialist account of disability. This initial materialist view of disabil-
ity acknowledged the signicant role of politics in reproducing disabling socio-mate-
rial environments (Gleeson 1997, 197). At the same time, the commitment of
disabled activists to their political struggle is so obvious that it cannot be dismissed
(Siebers 2006, 179). Thus, disability studies have always been marked by strong
politicisation. However and it is a theoretical contribution that this paper aims to
make politics does not constitute a monopoly of governmental action or of the pol-
icy domain. Politics in this context is distributed among a hybrid arrangement of
humans and non-humans as well as experts and lay people (Latour 2004, 223; 2007,
817). Politics may refer to very different meanings of the word. In this paper and
inspired by Latour (2007), politics refer to: all new associations between humans
and non-humans that modify the collective; and deliberative problem-solving by lay
people in areas previously dominated by scientic experts (2007, 816817).
As a direct legacy from Enlightenment to modernity, technology and scientic
knowledge has appeared as something that exists outside the irrationality of politics,
and has been portrayed as a neutral and objective product of scientic expertise.
During modernity, the unquestionable position of natural scientists and engineers
allowed them to speak in the name of supremacy, precision and academic validity
regarding matters that involved science and technology (cf. Collins and Evans 2002,
239). Urban planners and architects, for example, have treated the built environment
as a process of geometrisation of lived space in which things became numbers to be
understood as objective and intelligible forms(Imrie 2003, 50). These forms,
however, anticipated a human body as described by Euclidian geometry, the
826 V. Galis
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proportions of the Vitruvian man and romantic Renaissance conceptions of antique
perfection. In other words, the design of the built environment failed to integrate
bodily and physiological diversity by materialising architectural obsessions sourcing
from an able-bodied, taut, upright, male, healthy body measure (Imrie 2003, 49).
The authoritative character and ableistpolitics of architecture and architectural the-
ory also contributed to medicalisingdisability and the impaired body, underrating
the role of inaccessible urban environments in the creation of disability. Neverthe-
less, these were certainly not the only factors behind the entrenchment of disability
behind scientic and biological citadels (clinical diagnosis and the abnormalbody).
In the following text, I will provide a short account of the evolution of disability
studies from the so-called medical model of disability to postmodern approaches.
The latter constitutes an entry point, or rather a bridge, to the broad eld of STS.
My ambition is to deduce concepts or even theoretical reasoning from specic STS
strands and to apply them to the ordering of disability. Central focus will be given
to the implication of the experience of disability with the material, semiotic, politi-
cal and biological entities that constitute it; namely, the lived experience of
impaired, gendered, ethnic bodies interacting with the conguration of the built
environment and its materiality. The conguration of the built environment also
touches on questions of representation and involvement: how are disabled people
involved in the policy-making sphere and in techno-scientic debates? Who speaks
in the name of whom? Who represents whom and what? (cf. Callon 1986a, 214).
From medical to social to postmodern approaches of disability
The rise of industrialisation and medical science –‘the techniques of power that
were essentially centred on the body, on the individual body(Foucault 2003, 242)
during the nineteenth century legitimised radical shifts in the approach to disabled
people: the medicalisation of illness and impairment, the dominance of medical
experts, and the broad institutionalisation of disabled people in asylums, followed
by residential and educational facilities for the blind,deafand those classied as
intellectually impaired (Barnes, Mercer, and Shakespeare 1999, 1820). By the start
of the twentieth century, the medical approach dominated the ordering of disability.
Disability, as dened by medical experts, was exclusively situated in impaired,
invalidbodies that needed to be cured by medical science with possible solutions
that aimed to overcome or minimise the negative effects of the individuals impair-
ment (Siebers 2006, 173; see also Llewellyn and Hogan 2000, 158; Barnes, Mercer,
and Shakespeare 1999, 21). Within this framework, disability is associated with the
physiological status of the individual on the one hand, and the individuals socio-
cultural beliefs and features on the other. The medical model was rejected by dis-
ability organisations and disability activists because it concentrated on impairment
and the handicapped body as the determining factors behind disability (Oliver
1996; Barnes 1998, 67)
The social model of disability emerged as a reaction to the medical model.
Although the politicisation of the disability movement can be traced back to the
nineteenth century for most countries in the western world, the effects of the vari-
ous social movements of the 1960s and early 1970s created the conditions for dis-
ability studies scholars and disabled activists to seek to replace the medical
approach to disability with a social model of disability (Diedrich 2005, 654; Oliver
1990, 2; Shakespeare 2006). This approach, which refused the role of medical
Disability & Society 827
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experts in the ordering of disability and related disability to social oppression, was
rst articulated in 1975 by the Union of the Physically Impaired Against Segrega-
tion (UPIAS 1976, 4) in Britain. The UPIAS, building on lessons learned during
the agonistic 1960s and with the help of South African disability activist Vic Fin-
kelstein, succeeded in establishing a theoretical grounding for the social model of
disability (Barnes 1998, 73). These rst political and theoretical steps in the social
ordering of disability, however, have been accused of bearing a naïve and determin-
istic technological optimism (Barnes 1998, 74; Barnes et al. 1999, 84; Shakespeare
2006, 200). This initial social approach of disability lacked a critical link between
bodily experiences of disability, the development of social policies and the congu-
ration of technology (and the built environment). As a result, a number of disability
scholars have called for more critical theoretical approaches that would address both
material and ideological aspects of disability (see, for example, Abberley 1987).
Such an approach was introduced in the book The Politics of Disablement (Oliver
1990), where disabled activist and academic Mike Oliver critically related disability
to economic and social structures as well as to central values of particular modes of
production (Barnes, Mercer, and Shakespeare 1999, 84).
The work of Oliver was to develop a social theory of disability that was situated
in the experiences of disabled people as well as in their effort to organise a social
movement for redening disability (1990, 11). To Oliver, disability cannot be under-
stood in terms of purely internal social or psychological relationships a whole
range of material factors (such as housing, nance, employment, the built environ-
ment and family) must be taken into account (1990, 69). Such a re-denition of dis-
ability implied a shift in the epistemological focus from the body to the socio-
material environment, from the individual to society, and from illness to culture.
The new approach bypassed the notion of self and classied disability in terms of
urban and social environments that disabled people live in. In this framework, phys-
ical/structural and intellectual barriers in labour, urban design and institutions,
together with biased cultural perceptions of difference and dissimilarity, are the
sources of disability. One of the strongest arguments in support of the social model
of disability is that it has been politically effective in approaching disability as
social constructions and physical barriers imposed by able-bodied people. Disability
is an ambiguous concept and it should not only be focused on the individual handi-
cap or impairment, since it has some collective existence in the social and the mate-
rial world beyond the existence or experience of individual disabled people
(Priestley 1998, 83).
Although the contribution of the social model of disability to the disability
rights movement and the liberation of disabled people is unquestionable, critical
voices from a postmodern framework have raised serious scepticism about the
inattention of the social model towards everyday experiences of disabled people
with regard to gender, ethnicity, sexuality and the body. Corker and Shakespeare
(2002) argue that the social model denes disability as something unrelated to the
impaired body. In this way, it disregards personal experiences, the range of impair-
ments and their impact on individuals over their lifetime, and interactions of the
body with its surroundings; in other words, how disability is experienced in every-
day life and through different subject positions. This is where STS can contribute,
by bridging modernist divides (body versus society, materiality versus culture), link-
ing the disability experience with socio-material congurations, and providing some
conceptual tools for life beyond the social model of disability.
828 V. Galis
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Beyond the social model: the ontological politics of disability
A number of scholars have attempted to address disability experiences as they are
articulated and come into being within specic practices, cultures and institutions
(see, for example, Cultural Studies 2005, special issue on Genealogies of Disability,
vol. 19, no. 6). Diedrich (2005, 650) argues that the social model has not adequately
problematised disability experience as a category of representation that emerges and
evolves within a particular socio-material and political/historical reality. What is
needed, then, is a theoretical vocabulary that answers the question of how people
become and are made disabled (cf. Moser 2006, 668), but also who has the authority
to determine what disability is and how it is represented. This is not merely a claim
about external material or semiotic constructions of disability, but about a political
account of the enactment of disability in material and semiotic practices. What is
interesting here is how disability is produced and reproduced in material and semi-
otic performances of realities (cf. Landström 2000, 477). Such a vocabulary/claim
creates the possibility for two radical shifts in the ordering of disability.
The rst shift is an epistemological rectication of the object against the hege-
mony of the individual subject as sole generator (or autonomous agent) of socio-
material realities, in sociological analysis. Corker and Shakespeare (2002, 3) argue
that disability experience is embedded in complex networks of not just social but
socio-material relationships. Abandoning the subject as the unit of analysis marks a
shift from modernist divisions (body/socio-material environment, individual/society,
illness/culture) towards an ordering of disability as a simultaneous biological, socio-
material and semiotic effect produced by heterogeneous objects. The second shift is
extending politics to the formation of reality/ontology (experience of disability).
Inspired by the work of Mol (1999), this vocabulary creates a link between the expe-
rience of disability (the real, the conditions of possibility and disability that disabled
people live with) and the political (who has the power to determine what is real and
in which locations) (cf. Mol 1999, 86; Landström 2000). As Siebers (2006, 180) puts
it, one of the most important issues for disability studies is that the struggle of dis-
abled people is linked to a realistic concept of the disabled body. This struggle refers
to how disabled people inuence the disability ontology by participating in the
conguration of policy-making, urban environment design, and other such activities.
Against the rational independent modern subject: towards an analytical
symmetry between humans and non-humans
Disability studies resisted an earlier interaction with STS, since disability activists
attempted to order disability outside the positivist medical model (Diedrich 2005,
658). Indeed, the rst generation of STS scholars appeared to attempt to understand,
explain and effectively reinforce the hegemony of science and scientists, rather than
to question their basis (Collins and Evans 2002, 239). As already discussed, the
reaction of the disability movement against the positivist approach of disability was
expressed by the emergence of the social model of disability. The social model
treats disability as socially constructed, beyond the impairment (Corker and Shake-
speare 2002, 3). During the same period, a new wave of scholarship occurred
within STS that focused on the social construction of knowledge. However, social
constructionism failed to approach the complex and difcult physical realities faced
by disabled people (Siebers 2006, 175).
Disability & Society 829
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A theoretical strand emerging from the eld of STS in the early 1980s, intro-
duced as actor-network theory (ANT),
has strongly resisted the notion of social
construction concerning science and technology. ANT scholars argue that both nat-
ure and the built environment are produced by society and culture instead of being
givenoutside society or socially constructed (Latour 1997; Moser 2003, 26). This
is where STS can be valuable to disability studies. Following ANT, the study of
disability should depart from the assumption that the impaired body is imminent in
reality, and vice versa.
Hess (1997, 108) notes that ANT succeeds in avoiding the limitations of social
constructionism by providing a way for non-humans to inuence the processes and
results of socio-technical processes. To emphasise material semiotics (in contrast to
social constructions), ANT researchers introduced the specic concept of actor-net-
works. Actor-networks are interconnected complexes through which human and
non-human entities evolve, interact and produce effects, such as the loss of function
or a diminished ability to function, or disability (Moser 2000, 205). The metaphor
of actor-network was introduced to monitor the dynamic activities that link together
different entities such as bodies, places, ideas, artefacts and realities (Moser 2005,
670). ANT describes how actors (objects) within a network take their form and
acquire their attributes (subject positions
) as a result of their interactions with other
objects in the network (cf. Law 1999, 3). For example, a fully accessible metro sys-
tem equipped with ramps, guiding lines, sign-posted facilities in Braille, visual and
audio beacons, and other aids produces disability/ability as an effect of associations
between the human body and these material semiotic entities (Galis 2006). When
the speech machine of a person with a reduced ability to speak does not work, she/
he is incapable of making herself/himself understood (Moser 2000, 223). In other
words, ANT illustrates how actors and networks are enabled/disabled in relation-
ships and applies this to all materials, both human and non-human (Law 1999, 5).
In an ANT framework, the study of disability involves identifying and address-
ing interactions between human bodies (including the disability experience) and
non-humans, not on top of impairment but as an intermixing phenomenon. ANT
attempts to cancel the divide between subject and object, by ascribing a generalised
symmetrybetween human and non-human actors. Latour (1988, 301) accuses soci-
ologists of discriminating against non-human actors in the sense that they ignore
the fact that non-human entities can delegate behaviour to humans. Thus, using
ANT does not involve the privileged study of either impaired bodies or social
material constructions but the analysis of situations where the interactions of bodies
and materiality/culture produce action or inaction, ability or disability (agency). As
with all controversial approaches in the social sciences, ANT attracted followers but
also faced hard criticism. Two main critiques that are relevant to this paper focused
on the issue of generalised symmetry, and ANTs disinterest in power asymmetries
of network formation.
The claim of ANT scholars that sociological analysis should treat both humans
and non-humans symmetrically has confused many social scientists and remains
controversial. Does the symmetrical approach imply that non-humans have inten-
tions and feelings? Can non-humans be actors? Do non-humans have agency?
Collins and Yearley (1992, 320), proponents of the social constructivist strand
within STS, accused ANT of mixing the notions of behaviour and action, which
constitute the great distinction between machines and human responsibility. In other
words, this kind of criticism stemmed from the modernist sociological concepts of
830 V. Galis
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actorship and agency, where actors are generally assumed to be humans (cf. Kjell-
berg 2001, 555).
ANT scholars, responding to Collins and Yearleys criticism, argued against the
modernist separation of things and humans and instead proposed that the sociologi-
cal analysis should follow the attribution of roles; that is, to follow the exchanges
of agency within a network (Callon and Latour 1992, 355356). This means that
agency depends on the objects role or position within the network that agency
can be continuously transformed from one object to another (Pickering 1995, 15).
While humans are endowed with logic, choice, experiences and intentions, this per-
formative agency would not be possible if not for the existence of material semiotic
surroundings. By themselves, things and humans do not act, but there are relations,
negotiations, interactions and effects between human and non-human entities
(Callon and Law 1995, 485). The way ANT scholars approach subjects is the same
as they previously approached objects (Moser 2000, 223). In other words, the gen-
eralised symmetry principle implies that disability is an effect of a process of associ-
ations in a network. To empirically illustrate this, different bodily forms, abilities
and disabilities are not independent of architecture, but are mutually constitutive
(Imrie 2003, 51). For example, pavements, ramps, stairs, elevators, washrooms,
benches, signs, public buildings, wheelchairs, and other infrastructure enact action/
agency: disability/ability.
This does not, however, imply that non-humans consciously choose to facilitate
disabled people or that ANT extends intentionality to non-human entities. These
objects perform actions rather than construct or possess them. Disability/ability
(action) is analysed here in functional terms (Winance 2006, 66). Thus, in a human-
centred vocabulary, these actions are often called intentionsor goals, while in a
non-human terminology these are called functions(Latour 1994, 8). Thus, the
attribution of agency cannot be detached from the surrounding material semiotic
entities; disability cannot be detached from the existence or not of accessibility pro-
visions. To be disabled is not only determined by the physical impairments of an
individuals body but also by the interaction of the body with material and semiotic
entities. As Gleeson puts it, in the post-positivist era it is not only social processes
that produce material space; produced spacealso forms social norms (2001, 252)
and bodily experiences. In the postmodern era, it is not only socio-material pro-
cesses that perform disability, but also impaired bodies that enact ontological poli-
tics. Imagine what would happen if we were to design and construct urban
environments only for wheelchair users, write books mostly in Braille, or communi-
cate in sign language. Who would be disabled in those cases? Thus, as Moser
(2000, 224225) notes, disability/ability is also a matter of attribution of agency
and actorship, depending on the actor-networks a person is part of. The associations
between actors determine their experiences.
Put another way, ANT proposes an alternative vocabulary that goes beyond
social constructions or medical understandings of disability. On the contrary, a
material semiotic approach is interested in how disability is done and enacted
(Mol 1999, 77). How one becomes disabled plays a central role for this theoretical
story. As Mol notes, objects that are performed do not come alone: they carry
modes and modulations of other objects (1999, 81). Thus, in order to understand
disability as a form of enactment, to track down how we do disability, the
researcher must study multiple objects (both human and non-human) and multiple
domains (Diedrich 2005, 659). Accordingly, the sociological analysis ought to study
Disability & Society 831
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the ordering of disability and the experience of impairment in locations that are not
merely socially constructed or medicalised by social policies, the media, special
education, economics and rehabilitation (Moser 2005, 671). We have to also look at
locations where the ordering of disability meets and enacts everyday life, govern-
mental action to congure the built environment, scientic debates to confront
impaired bodies, and so on. These locations often imply exclusions and trials of
strength between disabled people, professional politicians and experts.
The second main source of criticism that is relevant to this paper concerns
ANTs lack of interest in the power asymmetries of network formation and its epis-
temological obsession with powerful actors that overlooks the contributions and par-
ticipation of other social groups (see, for example, Law 1991, 13; Star 1991, 33;
Lee and Brown 1994). Traditional ANT refers to human competence through a cun-
ning perspective: empire-building abilities as manifested by Machiavellis prince are
essential for establishing and spreading a technology (Latour 1987, 124). This
aspect of ANT is problematic since it does not allow for recording discriminations
and exclusions. ANT does not say anything about which actors are excluded from
the network and why, despite the fact that the formation of networks often entails
the efforts, practices, and functions of less visible actors. Moser (2005, 668) won-
ders how the study and ordering of disability can avoid reproducing asymmetries
(between subjects and objects, between strong and weak actors) in the distribution
of power and agency. Latour (1988, 302) himself has acknowledged this deciency
by stating that ANT does not solve all problems, since it excludes segments of
human populations such as old people and disabled people.
The question emerging from this preoccupation with power is what happens to
less privileged actors in the network? How does ANT record the exclusion or the
inuence of less powerful actors? Disability this could be a second contribution
of STS and this paper to disability studies is also enacted by different exclusions
of disabled people and their organisations from the ordering of disability ontological
politics. Historically, organisations for disabled people have been relatively weak in
representing the interests of their disabled members in different governmental or
techno-scientic spheres. Instead, social service managers, medical or other scien-
tic experts have had the interpretative prerogative to dene and enact the bodies
and interests of disabled people (Drake 1994, 1996; Barnes, Mercer, and Shake-
speare 1999; Galis 2006). The limited inuence of disability organisations did not
initially allow for considerable interventions in policy-making processes, and this
fact made them immediately invisible to traditional ANT analysis. Thus, one issue
for disability ontological politics is central here: how disability studies can (with the
help of ANT) support and conceptualise the struggle of disabled people to take con-
trol of disability ontological politics and participate in the enactment of the disabil-
ity experience in the policy-making sphere, setting aside asymmetries in the
distribution of power and agency in the network.
From the tyranny of experts to the insurrection of anti-science: disability
concerned groups
To address the issue above, one has to delve into postmodern thought and re-establish
its links to the various social movements of the 1960s and early 1970s. During this
period, general attacks on science, the juridical system, morality, the traditional
approach of sexuality and other areas contributed to what Foucault (2003, 7) termed
832 V. Galis
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the insurrection of subjugated knowledges.The insurrection of subjugated knowl-
edgesconstitutes an autonomous and decentralised production of knowledge that
ignores the established scientic tyranny in seeking validity: anti-science. This sort of
knowledge, which has been previously disqualied as non-conceptual, insufcient,
and hierarchically inferior by the gatekeepers of scienticity, appeared from below,
based on what people know/experience at a local level and contribute to open up for a
critique of the modernist hierarchy of erudition and sciences(Foucault 2003, 510;
see also Diedrich 2005, 653).
It is these anti-sciencesthat this paper also aims to conceptualise and support
as well as draw attention to how anti-science is represented in the material politics
of disability. In this case, the analysis should not treat disability groups merely as
political associations but as carriers of anti-scientic knowledge and experience of
indisputable signicance for disability ontological politics. How do ANT scholars
address anti-science? For example, we need concepts and methods to follow how
urban disability movements have unsettled the forms of positivism crystallised in
the built world and social shaping of the modern industrial city (cf. Gleeson 2001,
255). Callon and Rabeharisoa (2003, 193194) note that while theoretical tools
within ANT have been valuable for analysing technology and the controversies that
it creates, they have not paid attention to questions regarding relationships between
experts and non-experts, and scientists and lay people. In line with Callon and Rab-
eharisoas suggestion, the contribution and involvement of social groups (they call
them concerned groups) should be incorporated into the scope of the analysis of
disability studies. It might be fruitful to consider concerned groups as (potentially)
genuine researchers who are capable of working cooperatively with professional sci-
entists (2003, 195). Concerned groups (such as patient organisations, environmental
groups, consumersassociations, involved individuals, and disability associations)
are those social groups that are inuenced by the development of techno-sciences
and seek to intervene in research processes and the development of technology.
This kind of involvement lacks, however, the endorsement of the conventional sci-
entic regime. The involvement of these groups in the production of techno-scien-
tic phenomena affects their socio-material role and deranges their social, political
and economic status for better or for worse.
Employing this concept brings the sociological analysis of disability one step
forward by abandoning conceptualisations of disability groups as merely pressure
groups, charity organisations, traditional voluntary and self-help groups, civil rights
and anti-discrimination lobbyists, labour unions, and other organisations. The con-
cept of concerned groups describes a dynamic process, an anti-science, by which
different types of disability groups inuence the collection of associations between
humans and non-humans that modify the enactment of disability. These are groups
that have entered the arena of disability ontological politics, appeared before experts
and made themselves credible co-speakers by becoming competent, by participating
in conferences, by dissecting research protocols and architectural blueprints in order
to obtain mastery of the technical vocabulary, and by tracing rehabilitation methods
back to medical education (cf. Callon, Lascoumes, and Barthe 2009, 84). How can
the analysis capture this participation and what are the spaces that mark the involve-
ment of concerned groups?
To sociologically consider anti-science in the ordering of disability delivers a
blow to the modernist division between experts and lay people. Analytically, this
implies following what Callon (2003) refers to as research in the wild; namely,
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knowledge produced by non-expert groups through their participation, practices,
exploitation of existing experiences, negotiations with other groups, and new organi-
sational congurations. Rabeharisoa and Callon (2002, 62) dene research in the
wild as the process through which concerned groups accumulate and compare the
experience of their members and build up a collective expertise that is just as authen-
tic as that of experts or scientists, even if it is different. In contrast to conned
research (i.e. research that is conducted by experts in milieus that are not part of the
public sphere, such as laboratories, architectsofces, scientic committees, and pri-
vate ofces), research in the wild does not claim or possess scienticpurity.
Instead, it is confronted with compound, impure, polluted realities (Callon 2003, 46).
The concept of research in the wild highlights the perspective that the conguration
of techno-sciences does not have to follow the traditional route via conned scien-
tic environments (e.g. the architectural ofce), which often implies a relatively pas-
sive role for the public sphere and a domination of scientists and engineers. New
settings for novel modications of associations between humans and non-humans
involve moments of interaction and negotiation with different concerned groups such
as disabled people, who were otherwise invisible in the ANT context. After all, con-
cerned groups possess expertise and experience concerning their own needs and
bodies, which is important knowledge for the design and implementation of urban
environments, and which emerges from research in the wild.
Negotiations between research in the wild and conned research cannot take
place in what Gleeson (2001, 254) calls institutions of industrial modernity, which
exercise power through the truthcodied in science, technology and parliamentary
democracy. These negotiations demand public spaces such as those that Callon
(2003) calls hybrid forums: forums because they are open spaces where diverse
groups can discuss technical choices concerning the collective, and hybrid because
these heterogeneous groups and the spokespersons who claim to represent them
constitute different concerned groups consisting of patients, citizens, politicians,
architects, doctors, engineers and others (2003, 59). Hybrid forums constitute
assemblies of ontological politics where concerned groups, which carry out research
in the wild, negotiate with scientists, engineers and other experts, who conduct con-
ned research on techno-scientic issues, and collectively modify the enactment of
disability. In the case of the new metro system in Athens, for example, several
hybrid forums, such as working groups on accessibility organised by disabled civil
servants, meetings between various disability organisations and the company that
supervised the construction of the metro, and two cross-ministerial accessibility
committees consisting of engineers, public servants and disability representatives,
addressed disability issues and developed specic proposals and recommendations
regarding the realisation of accessibility in the system (Galis 2006, 265). These
hybrid forums enabled collective (expert and non-expert) modication (ontological
politics) of an assembly of humans and non-humans (disabled bodies, accessibility
provisions, metro system). In other words, hybrid forums constitute cooperative
research efforts that not only encompass discussions on technical or scientic
choices, but also the exploration and exploitation of anti-science that is, expertise
and experience that lies outside the frame of conned research. This is not a claim
in support of the research collective, but rather a claim for collective research crys-
tallised in subjugated knowledge and conned research. The sociological analysis
of the ordering of disability ought to look for existing hybrid forums or normatively
suggest the inauguration of such arenas.
834 V. Galis
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This paper offers disabled activists (both within academia and elsewhere) a theoretical
alternative to the ordering of disability that escapes the epistemological extremes of
modernity (external interpretations of disability by either proponents of the medical/
industrial complex or radical social constructivists). Instead of solely examining the
physical aspect of disability (medical model) or removing entirely the focus from the
body (social model), this article proposes a conceptual vocabulary that monitors
the multiplicity of the experience of being disabled by simultaneously addressing
interactions between the impaired body, disabling social and institutional barriers, and
inaccessible urban environments. In so doing, I turned to ANT and applied the discus-
sion on performative agency to the enactment of disability. The important point here
is that disability does not reside solely in the body or in society. Disability is an effect
that emerges when impaired bodies interact with disabling infrastructures/culture.
For instance, does non-driving (agency/action) constitute disability? It depends
on the accessibility of the public transport system, how mobile a body is, how driv-
ing culturally is dened, and so on. What we learn from applying ANT in the eld
of disability studies is that we cannot reduce disability to impairments or social
constructions. Instead, the analysis concentrates on ontological peculiarities, or how
disability is simultaneously experienced through bodily functions, constructed in
social and cultural norms, anticipated and manufactured in policy-making and tech-
nology development, and created by architecture. ANT is interested in the symbolic,
material, physical and cultural practices within which disability ensues.
The second contribution of ANT to disability studies that this paper addresses is
a theoretical vocabulary that monitors the exclusion of disabled people from disabil-
ity (ontological) politics and an empirical methodology to accentuate and promote
the involvement of non-experts in the conguration of policies and techno-sciences
related to disability issues. The inability of early ANT to follow politically weak
actors generated a number of concepts on the involvement of concerned disability
groups in the conguration of the built environment, conceptualisations of accessi-
bility (rules, regulations, norms, denitions) and the impaired body. Inspired by
these discussions and abandoning the dominant approaches of disability that have
constituted external researchers, social service managers or physicians as the only
legitimate experts, this paper suggests an analytical focus on the contribution of
disability organisations in the conguration of disability politics and policy-making.
This approach does not have to be limited only to issues of deliberative representa-
tion, but to how disability associations, as carriers of disability knowledge and
experience, can actively address disability issues and develop proposals and recom-
mendations regarding the realisation of an inclusive society. These proposals could
be a product of disabled peoples own anti-science or research in the wild. In turn,
research in the wild and the interests of disabled people may be represented in
hybrid forums, challenging the hegemonic authority of experts.
I would thus like to encourage research that addresses the experience of disabil-
ity with the help of the conceptual vocabulary that I have discussed here, to follow
disability as it is enacted in everyday life, in policy spaces, in infrastructure, and
among disabled people, academics, experts and politicians. For the social researcher,
the ontological politics of disability imply that she/he must follow the action/agency
concerning disability, and normatively propose forms of participatory research on
disability issues.
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professional politicians.
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tured into, but rather a set of differently ordered positions one moves between uidly
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... In ANT, the attention devoted to issues of disability is on the rise (Blume et al., 2014;Galis, 2011;Moser, 2006). Sometimes, ANT is criticized for not taking interest in excluded or less privileged actors (Galis, 2011); however, Moser and Law do notice who is excluded from making other connections (Moser, 2006;Moser & Law, 1999), which is also the case of Adam. ...
... In ANT, the attention devoted to issues of disability is on the rise (Blume et al., 2014;Galis, 2011;Moser, 2006). Sometimes, ANT is criticized for not taking interest in excluded or less privileged actors (Galis, 2011); however, Moser and Law do notice who is excluded from making other connections (Moser, 2006;Moser & Law, 1999), which is also the case of Adam. Some subjects are constructed as autonomous and able, and they can act, move freely and connect into a network, while others are created as disabled, and they cannot get off at the tram stop. ...
Full-text available
Using a case study of a kerb – the social stone – found at a tram traffic island, the text demonstrates the re/production of the ableist city and analyses processes of transforming such a city into an accessible space for people with disabilities. The authors apply actor-network theory to analyse the mutual construction of space and bodies. To understand this construction, the concept of topology is used, which the article develops by introducing ‘ableist’ and ‘accessible’ topology. Unlike topography, which is in concord with able-bodied people, topology is more suitable for the analysis of space when also including non-standard bodies. Moreover, it allows the authors to analyse the mechanisms that reproduce and control the currently inaccessible city on the one hand, and it provide some room for change on the other. However, to make this change happen, a specific network must be established. To trace the associations that create such a network, the study uses in-depth interviews with involved actors collected over a ten-year period.
... Our analysis concerns the way firms strive to be much more technologically advanced in adopting digital technologies (accessible website; learning and training applications; assistive technology; etc.) to promote the social and economic inclusion of their workers with disabilities. Following the strand of previous studies [6,7,8,9], this paper aims to contribute to service science research by providing an integrated treatment of service science and technology studies and disability studies, where the first two research areas support the latter to tackle the existing challenges going beyond the dominant approaches, such as the medical and social models, adopting a very open perspective related to sustainability. We follow the key concept of service science, that is creating the right mix of knowledge, including computer science, engineering, management, and social science, also paying attention to the disability phenomenon at the workplace. ...
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This paper investigates the role and function of digital technologies within firms, widely believed to make them much more sustainable and promote the social inclusion of people with disability (PWD) at the workplace, especially those with cognitive disability or autism spectrum disorder (ASD). In the last thirty years, and more recently due to the COVID-19 pandemic, technological change related to digital transformation, hence the adoption and diffusion of digital technologies, has impacted every field and sector in private and professional life, both positively and negatively. Undoubtedly, our ways of working and quality of life have been improved by digital technologies which are able to overcome geographical, physical, and social barriers. Yet there are negative effects in some domains and for certain categories of people, like those with disabilities or special needs. Within the well-known phenomenon of digital divide, people may be totally excluded due to their limited digital skills or lack of access to technological tools. After a brief review of the literature on the topic, adopting a multiple case study method, we investigate several firms operating in different economic sectors in one specific country, namely Italy, where there is a significant presence of PWD, mostly with ASD, who face challenges in being recruited and working within organizations. Our qualitative research, investigating the role and function of digital technologies in supporting and promoting the inclusion of PWD at workplace, provides some stimulating insights for future studies.
... Furthermore, this paper can contribute to the service science research because it is able to provide an integrated reading of service science and technology studies and sport studies, specifically football industry. Indeed, according to previous studies [5,6,7,8], the service science and technology research areas support the sport studies to face the existing challenges that is being and performing in the perspective of high degree of technology innovation and sustainability. ...
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This paper investigates the Italian football clubs adopting a double perspective: the point of view of sustainability and technology innovation. In the last decades, the increasing implementation and spread of digital technologies worldwide in any economic settings, including the sport industry, especially the football business, has been playing a crucial role in supporting managerial, work out and training processes and making them much more competitive and high performing. At the same time, sport organizations, including football clubs, must achieve the UN Agenda 2030 with its 17 SDGs trying to improve their performance in the sustainability perspective. This paper, through a multiple case study of the Italian football clubs in the Serie A for the year 2021/2022, provides a portrait of these sport organizations and their way to be sustainable and much more technologically advanced in one specific county, where football industry has high relevance for volume of affairs and impact on sustainability. Thus, we match the two perspectives especially considering the role and function of digital technologies in making football clubs much more sustainable. After a brief review of the literature on the topic, we investigate the Italian football clubs mapping them considering their degree of sustainability and technology orientation. Our qualitative research provides useful insights about specific technologies able to improve the overall performance of the sport organizations, as well as knowledge about best practices already adopted by organizations for being sustainable, creating a kind of guideline for operators in the football industry.
... En este sentido, Kavanagh (2018) discute la necesidad de recurrir a perspectivas más fenomenológicas al investigar la discapacidad, porque las personas no encarnan ni el modelo médico ni el social, pues experimentan de acuerdo con su propia situación corporal y social. Con base en una perspectiva fenomenológica, Pantazakos (2019) propone el diseño de tratamientos que consideren la neurodivergencia y una visión de autism-worlds; Galis (2011), por su parte, aplica el enfoque actor-red como método y visión en la arquitectura inclusiva, para pensar cómo las rampas, escaleras, elevadores, bancas, edificios y otras infraestructuras fomentan la discapacidad o, bien, la capacidad. Esta postura gira sobre la autonomía y evidencia que alguien experimenta la discapacidad porque el diseño del espacio público lo considera o no. ...
El artículo discute la intersección etnografía y diseño como aproximación metodológica en dos estudios cuyo propósito fue diseñar para personas con autismo preverbales y sus madres. Se discuten la influencia y los retos del posicionamiento de la investigadora en las diferentes etapas de la exploración debido a su pertenencia al grupo con quien y para quien se hace investigación. Como hallazgo de la implementación metodológica de estas investigaciones, se propone un marco inicial para realizar etnografía inclusiva. Finalmente, se reflexiona sobre el sentido de la etnografía y el diseño en la relación con la investigación-acción participativa y la investigación situada.
... The ANT framework has been used in the field of disability studies [17]; sick-leave could be studied similarly. Disability is not a property of individuals only, because the degree of disability depends on the environment. ...
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The Covid-19 pandemic has revealed the importance of social protection systems, including income security, when health problems arise. The aims of this study are to compare the follow-up regimes for sick-listed employees across nine European countries, and to conduct a qualitative assessment of the differences with respect to burden and responsibility sharing between the social protection system, employers and employees. The tendency highlighted is that countries with shorter employer periods of sick-pay typically have stricter follow-up responsibility for employers because, in practice, they become gatekeepers of the public sickness benefit scheme. In Germany and the UK, employers have few requirements for follow-up compared with the Nordic countries because they bear most of the costs of sickness absence themselves. The same applies in Iceland, where employers carry most of the costs and have no obligation to follow up sick-listed employees. The situation in the Netherlands is paradoxical: employers have strict obligations in the follow-up regime even though they cover all the costs of the sick-leave themselves. During the pandemic, the majority of countries have adjusted their sick-pay system and increased coverage to reduce the risk of spreading Covid-19 because employees are going to work sick or when they should self-quarantine, except for the Netherlands and Belgium, which considered that the current schemes were already sufficient to reduce that risk.
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Game culture and material culture have always been closely linked. Analog forms of rule-based play (ludus) would hardly be conceivable without dice, cards, and game boards. In the act of free play (paidia), children as well as adults transform simple objects into multifaceted toys in an almost magical way. Even digital play is suffused with material culture: Games are not only mediated by technical interfaces, which we access via hardware and tangible peripherals. They are also subject to material hybridization, paratextual framing, and processes of de-, and re-materialization.
Game culture and material culture have always been closely linked. Analog forms of rule-based play (ludus) would hardly be conceivable without dice, cards, and game boards. In the act of free play (paidia), children as well as adults transform simple objects into multifaceted toys in an almost magical way. Even digital play is suffused with material culture: Games are not only mediated by technical interfaces, which we access via hardware and tangible peripherals. They are also subject to material hybridization, paratextual framing, and processes of de-, and re-materialization.