TURNING NORMAL/DISABILITY INSIDE OUT: TECHNOLOGY AS
AN INTERFACE FOR ELIMINATING BOUNDARIES IN MODELS OF
DISABILITY
By
JANE FRIDRICH
Integrated Studies Final Project Essay (MAIS 700)
submitted to Dr. Raphael Foshay
in partial fulfillment of the requirements for the degree of
Master of Arts – Integrated Studies
Athabasca, Alberta
December, 2012
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ABSTRACT
The differing views between the social model of disability in Disability Studies and the
medical– sociological view of disability oppose each other in ways difficult to reconcile.
Normalcy/disability as it relates to Disability Studies highlights a set of western cultural
assumptions about what is good, beautiful and ethical which can be contrasted with very
different assumptions by people who identify as disabled. As a view from the outside of normal
looking in, the social model points out that these assumptions are largely unquestioned and
invisible to the non-disabled ‘normal’ population. This outside-in view emphasizes that
disability itself is a social and cultural creation, minimizing the importance of organic
impairment.
Medical-sociology explains a different viewpoint of normalcy and interaction, from the
inside of normal looking out; focusing on individual contexts of disability based on organic
impairment.
Because the models conflict in their basic assumptions, lack of compatibility between
these two viewpoints is problematic to creating practical programs of equity and accessibility.
Illuminating the gap between normal and disabled views is the first step in facilitating
understanding so commonalities can be found in order to build equity programs.
Science and Technology Studies (STS) and Techno-Feminism contain methods for
analyzing meanings of disability and normal beyond the usual dichotomy of disabled/normal
viewpoints. Possibilities exist for understanding the co-construction of disability, inclusive of
positive aspects of both models. By shifting boundaries through examining the interface
between humans and technology, alternative socio-cultural spaces become available to question
and explore other perspectives regarding disability and normal. This broader human context
allows disability/normal to be grounded in acknowledgment of physical and social contexts.
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Outside in: Social Model Perspective of Normal/Disability
The social model of disability is a point of view related to feminist standpoint theory
(Hartsock, 1983), a unique political viewpoint of feminist oppression. In this case, a disabled
perspective opposes, and differs significantly from that of the dominant, non-disabled culture.
The social model contains within it knowledge specific to a subordinated group –those who
identify as disabled based on social discrimination and oppression.
Normalcy, described from this outside-of-normal standpoint is seen as individual acts of
judging by ‘normals’ of what is good, beautiful or ethical inclusive of a narrow range of
behaviours and aesthetic constructs. Normal can also be bounded by what society legally limits,
medically attempts to prevent, and censors in public media. Central to the social model of
disability is the idea that disability itself is socially constructed and is different from
‘impairment’, a term used to describe pain, suffering, or ‘personal restrictions’ (Oliver, 2009, p.
25).
In order to fit into society, disabled people often attempt to master the art of ‘passing’ as
normal (Linton, 1998) in order to gain access to resources aligned with status as a productive,
law-abiding, and attractive member of society. Passing involves assuming an identity, one that
is not true to one’s self, and is often uncomfortable and stress-inducing. Because of social
marginalization based on physical impairment, the disabled are excluded and set in opposition to
conceptions of normal, instead being cast in ‘heroic’ or ‘tragic’ roles for trying to be normal, yet
never reaching inclusion (Linton, 1998).
Disability studies authors point to this acceptance of normal and exclusion of disablement
as unquestioned schemas (Titchkosky , 2003). For example, Tanya Titchkosky points to
ordinary conversations justifying why accessible washrooms do not exist to illuminate the
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absence of commitment to equity, and to question why the absence of accessible washrooms is
seen as normal (Titchkosky, 2008). Exemplifying the ‘problem of disability’, disabled people
exist outside of the normal paradigm, seen either as tragic and deserving of pity because there is
no washroom, or as heroic people who make do with resources suited to normal culture.
Resulting from affirmation of ‘the problem’ of inaccessibility resting with the disabled
individual, the disabled cannot join society as humans with equal access and status. In contrast,
the social model considers the ‘problem’ of disability to lie with the dominant view of normalcy
and its resulting social construction of barriers, such that barrier removal would result in a more
equitable relationship (Shakespeare, 1997).
The bounded dominant view of normal is distinguished from the disabled viewpoint
through different cultural perspectives about what is normal. The ‘problem of normal’ here lies
with the dominant normal viewpoint of normal as the only reality. Broader significance of this
viewpoint is apparent in tracing the history of what and who is excluded from normalcy as a
reflection of how societies arrange a continuum of human ability into a social hierarchy.
Reflective of greater societal values about humanness, historical views of normalcy encompass
ethical relevance beyond an interesting survey of conditions and treatment (Kudlick, 2009).
While the social model is not the only view of disability, its dominance is due to political
potential to disrupt the normal point of view (Titchkosky & Michalko, 2009). As disability/
normal are dichotomous mutually dependent social creations, they can be changed through the
same processes that created them in the first place. Barnes, Mercer & Shakespeare, (1999)
consider the disability/normal relationship part of the shifting social, economic and cultural
structures of the society in which it is embedded. This flexibility of cultural structures allows
deconstruction in the same way it allows construction of barriers. Deconstruction of normal is a
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first step in creating awareness of the normal view as only one version of reality (Titchkosky,
2007). Through awareness, control over disabled people through normalizing and exclusionary
decisions yields to autonomy and inclusion as boundaries of normal expand to encompass a
greater range of human behaviour and experience.
Despite its promise of barrier deconstruction, issues with this model create difficulties in
moving an equity agenda forward. The most important issue involves the significance of
impairment in people's lives. The social model focuses on those social barriers which are
constructed “on top of impairment” (Barnes et al., 1999, p.2), and as such little attention is paid
to the reality of physical pain and suffering that cannot be removed by societal barriers
(Shakespeare, 2006a).
As an individual standpoint, Shakespeare (2006b) also notes that the social model does not
include views of caregivers, family members and others who provide social and cultural context.
While the social model has been refined by a few authors to include greater consideration
of impairment, its activist predisposition has been criticised both from within Disability Studies
(Shakespeare, 2006b) and from medical and clinical areas of sociology for lack of focus of
impairment which if not acknowledged, create difficulties in operationalizing collaboration
between disabled and non-disabled individuals.
Inside-Out: The Medical-Sociological Perspective
A normal dominant view of disability and normal can be represented by the medicalsociological perspective, where normalcy/disability is at least partly based on an idea of
objective deviance from a statistically ‘average’ person. It should be noted that both the social
model and the medical-sociological model are representative of opposite poles in
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normal/disabled dichotomy debates but are by no means inclusive of the range of viewpoints on
disability and normal.
In the medical-sociological domain, normal is based on ways of thinking, perceiving and
behaving relative to a norm. Deviance from normal is considered to be undesired, with the goal
of removing symptoms, pain and suffering as much as possible. In this view disability clearly
stems from impairment. Social context is considered, however is secondary to impairment. For
example, measurement of a patient’s own psychological attitude and motivations about their
impairment are important to ordering disablement along scales to determine resources and
treatment to be administered. Although categorization of disability can be useful for determining
limited resources, it can also lead to confusion with impairment in medical sociology. Diagnoses
made are dependent upon the contrast between ‘normal’ cultural and social factors and those that
deviate from them. A textbook on the sociology of mental-illness notes:
…whether a person is mentally ill often involves criteria that are also sociological. A
psychiatric finding of generalized impairment in social functioning involves an
understanding of such sociological concepts as norms, roles, and social status that
establish and define appropriate behavior in particular social situations and settings. It is
the disruption or disregard of the taken-for-granted understandings of how people should
conduct themselves socially that causes a person's state of mind to be questioned.
(Cockerham, 2006, p.2).
Impairment is related to normal social context as “taken-for-granted understandings” upon
which education about disability takes place. While authors have pointed out the idea that
understandings of measurement of function and quality of life are not objective, (Johnston,1996)
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the medical-sociological views presented of disability are focussed mainly on normalization:
returning a sick person to a perceived objective standard of normal.
The medical-sociological field cannot be separated from an economic interest in curing
and ameliorating disability. In addition to discovery of new diseases and syndromes which keep
expanding exclusions to the idea of normal, economic interest extends to treating users of the
system as ‘consumers’ with an implication that users have the ability to choose treatment.
Consideration of those not in a position to give consent is determined by medical experts who
make decisions on quality of life, giving rise to questions about ethics arising from terminal
impairment. These in turn shape and reflect back societal views about what kind of life is
human. Mike Oliver compares the ease of getting anti-discrimination legislation to the more
difficult task of coming to consensus about legislation pertaining to choice regarding death and
dying (Oliver, 2009) demonstrating the discomfort within socio-cultural spaces in debating
essential and inclusive features of humanness.
A shift toward a less impairment focussed model to one inclusive of disabled views has
occurred in some limited scope, and is due to the activist influence of the social model on
assumptions of normality. For example, the AIDS epidemic rallied those with AIDS to do their
own clinical research, change legislation giving them exceptions to trial experimental drugs, and
form powerful educational and self-help organizations (Sismondo, 2009). Despite pockets of
examples which are at least partially influenced by social model activism, there is nothing that
approaches a synthesis of consideration of disabled views within the medical-sociological model.
Without a focus on impairment, there would be a great difficulty within the medicalsociological model in allocating resources and performing research, however this basis conflicts
with the focus in the social model.
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Outside of medical sociology looking in, unasked questions about absence of disabled
views and access are apparent. Tanya Titchkosky (2011) points out how everyday conversations
about disability can point to why legislation and policies regarding equal access to resources and
decision-making have not been successful due to a lack of awareness and commitment about
social barriers. Commenting that there are no disabled people to justify a disabled washroom,
speaks to the absence of not only disabled people in an inaccessible building, but to the idea that
environments don’t need accessible washrooms until disabled people show up. Instead of
theorizing why disabled people might not be in the building i.e., they cannot access a washroom,
justification is provided for why one is not needed- normalizing the lack of consideration for a
disabled viewpoint (Titchkosky, 2008).
The social model is based in non-quantitative activism, while the medical-sociological
model is based on quantitative sociological norms. Despite criticisms of both the social and
medical-sociological models, one commonality they both share is flexibility in being at least
partially socially constructed. By definition, social barriers would not exist without impairment
and vice-versa. This dependence is based on the process of how disability/normal is understood
and constructed through actions and words.
The action of how impairment, disability and normal are created may be more important
to understanding why complications persist between the two models than differences in
definitions of terms. Social-construction is performed between people, entities and contexts. As
action, where disability is performed might be better viewed as a circulation of actions and
influences, not simply a set of constructs and contexts.
Public controversies over categorization regarding treatment make visible the split between
how disability/normal is performed: as something either organic/unchangeable or socially
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constructed. Sismondo, (2009) notes that ‘medical truths are laden with choice’ that arise in
controversies such as whether a disabled child should be taken off life-support. (p. 70).
These locations of controversy are clearly apparent where humans and technology interface
to prolong life, to place implants in humans, or to provide communication spaces. In being a
conduit for debate, these locations also allow us to see both the social and medical as part of a
system or network. In this upside-down perspective, we can step outside the usual conflicting
constructs of disability/normal and view both as dependant yet separate flows in a system of
processes that can give rise to a bigger picture than supplied by either.
Upside-Down: Technology as a Social and Cultural Interface for Alternate Meanings
Similar to treatment of the masculine/feminine perspectives in feminism, disability models
exclude opposites resulting in an ‘other’ to critique from a specific knowledge standpoint.
Analogies exist not only between disability and feminist viewpoints, but anti-colonialist and
queer cultural experiences as well (Hall, 2002). Through feminist standpoint analysis we
understand that the normal schema is based on fear over loss of control of bodies and minds, and
on a larger scale, loss of order in society. Motivating attempts to regulate and control behaviour
and appearance of those considered deviant, fear justifies marginalization and maintenance of
dichotomies (Tremain, 2005).
An example of how this dichotomy can be questioned is the account of Oscar Pistorius, the
Olympic athlete who competed in 2012 using flexible blades instead of lower legs. In addition
to comments about an unfair advantage that his non-flesh legs might pose, objections to his
‘blades’ were questioned in terms of posing an injury risk to the other runners. Although he had
proven in many previous races that his ‘blades’ were not a danger to others, he was clearly
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considered someone for whom reaffirmation of normality was continually required for
participation (Swartz & Watermeyer, 2008).
Standing outside normal but not identifying as disabled, Oscar Pistorius’ situation is not
unlike the idea of feminine cyborgs as excluded others, which have been a theme of technofeminism for a number of years. Donna Haraway (1998) and Judy Wacjman (2007) document a
techno-feminist paradigm where the analogy of women as cyborgs is acknowledgement of
alterities, and technology is celebrated as reclaimed boundaries of difference.
Contrasting Oscar Pistorius’ ‘cyborg’ legs with his Olympic calibre body-we have the
controversy of organic loss as disadvantage, advantage or just difference. This organic/nonorganic appraisal of performance briefly allows a glimpse into something beyond dichotomy as
the range of people’s unspoken assumptions become visible. The spectrum of opinion regarding
whether such an athlete should be allowed to compete gives credence to the idea that there are
many ways of framing normal/disabled beyond a simple dichotomy.
To analyze further, sex and impairment are organic and less changeable than disability and
gender which are dependent upon history and culture. Because these concepts are more
malleable to change (Shakespeare, 2006b), boundaries are difficult to locate. Impairment and
disability can be considered together as part of a spectrum of realities rather than being exclusive
of each other.
Between the social model of disability and the medical-sociological model the tension
between impairment and social construction makes it difficult to implement equity training or
accessibility as both impairment and social barriers need to be acknowledged for a useable
model. There is a need to find a space for both sides to re-frame disability so that moving equity
and accessibility forward can be understood in practical terms. An expansion of the meaning of
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human is needed, and a reframing of normal. If they can be considered integrated as part of
larger processes rather than existing as discrete entities, they can then exist together in the same
circulation or flow.
In addition to insights from techno-feminism, science and technology studies (STS) is
useful in providing spaces for understanding relationships using technology as a background.
Science and technology studies offer a socio-cultural perspective of the broad, and at first-glance
neutral subject of technology. As progress in technologies advanced quickly in the 1970’s
questions began to be asked about the social context that technology was embedded within.
These questions spawned the first STS theorists. Later more radical theorists questioned whether
the content of technology itself was socially constructed (Bijker, 2010). Disability Studies
authors have long recognized the potential for technology-human interfaces to negatively
construct disability as a social phenomenon (Linton, 1998). If disability can be negatively
constructed, it can also be positively constructed.
STS provides methods and tools for capturing complex interactions between humans and
technology in ways that singular viewpoints such as feminist standpoint theory cannot. Race,
gender, queerness and disability can all be viewed as a complex network of interactions using
STS tools such as Actor-Network theory ( Sismondo, 2009; Galis, 2011). By trying on a cyborg
identity in a game it may be possible to understand how humanness is socially constructed by
how others interact with that cyborg. This cyborg (actor) could in turn influence other human
actors who change their perception of the meaning of human and disability and influence other
actors in creating new technology which has meaning for disability. Self-organizing on-line
communities are also powerful social constructions spawning new resources for, and reframing
of the meaning of expert knowledge.
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A range of sensory experiences can be condensed into a ‘sensorium’ or immersion tank of
specific experiences of what life might be like with invisible impairments such as a learning
disability or schizophrenia on a virtual world site such as Second Life. All of these experiences
can extend boundaries of disability as a human phenomenon, and can be mapped using STS tools
as processes to illustrate the influence of human and non-human actors.
Use of STS and techno-feminism for questioning human-technology interface blurs the line
between human and machine. Implants and limbs of past decades were made to look and feel
like human skin as much as possible in order to normalize disabled people. This is no longer
standard practice as Oscar Pistorius blades reveal. Artificial limbs are becoming dramatically
different than flesh, highlighting function and design; extending the range of human experience
rather than normalizing by camouflage. Aimee Mullins, a model wears a range of legwear from
‘cheetah’ blades for running to ornately carved wooden boots. Mullins explains that “a
prosthetic limb doesn’t need to represent the need to replace loss anymore. It can stand as a
symbol that wearers have the right to create whatever it is they want to create in that space.”
(Mullins, 2009, p.55). Legwear allows her to experiment with changing her height, to the extent
that she has been confronted with the objection that it is unfair for her to vary her height based
on artificial legs to get jobs. Her response is that Pamela Anderson who has far more prosthetic
in her body is not considered to have an unfair advantage because she is conforming to normal
by passing augmented parts as ‘real’. Such comparisons and questioning of
advantage/disadvantage brings the meaning of humanness and impairment to the forefront. How
do we judge fairness and normality when humans interface with technology? Who decides what
is ethical or fair, and what stake to do they have in this situation?
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Potential is available through this kind of questioning for acceptance of a vast spectrum of
human bodies. Instead of binary disabled/non-disabled categories, people are discovered to exist
outside the narrow definitions of disability of both social and medical-sociological models.
Those who are temporarily impaired and those who don’t identify as disabled, but like Mullins or
Pistorius may experience some form of discrimination based on perceived identity may not fit
either model. By confronting normal with the uniqueness of bodies and their relationships to
technology, techno-feminism and STS together question assumptions underlying creation of
normal/impaired bodies and broaden the discussion around disability.
It could be argued that the examples of Aimee Mullins and Oscar Pistorius valorize
disability in highlighting the experiences of famous people who have ‘overcome’ obstacles to
become heroic figures. This might be true if either had attempted to conform by camouflaging
their limbs as flesh. Because they did not, they stand outside models; instead they mold a new
space for normal out of their experience and question both humanness and normal. Here,
potential new meanings for disability can be co-created out of relationships between materials,
technology and humans.
Another example which does not involve celebrity centres on invisible implants such that
the human-machine interface is not visually evident to confront normal and disability. Elizabeth
Christie had a cochlear implant in 2008, interfacing her brain with circuitry which allowed her to
regain some hearing. This device facilitated changes in her neural pathways, effectively making
her into a self-described cyborg. Christie then began to navigate the ‘alien terrain’ of the
auditory world. As her brain began to re-map the world based on new aural input, she found she
was ‘overwhelmed by the outside world intruding’ (Christie & Bloustien, 2010). In this case,
Christie’s state of not-hearing was normal experience, and her experience of the ‘normal’ world
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of hearing was alien. Ability to navigate other environments using technology by both
disabled/non-disabled people and discuss them is important to understanding that a state of
‘ordinariness’ exists for all people.
Christie posted pictures and comments in a blog that she kept, documenting her
transformation in words and pictures as a site for public pedagogy about her experience with
deafness and implants (Christie & Bloustien, 2010). Her site also serves as an example of the
important function that technology as media plays in engaging senses and emotion in the
experience of the self-described cyborg and human-being, Elizabeth Christie.
Interaction on-line though blogs, on-line conversations, and discussion groups point to
another way technology provides space for engaging the concept of normal. Video, blogs,
music, and performance which can be posted provide a new form of knowledge about experience
which can be shared in a novel and intimate way. Not only can this media confront and inform,
but create communities around shared ideas to be explored, producing new kinds of experts.
These new experts are people like Christie who have experience with disability and are users of
medical systems. They are important voices in formulating new spaces for conversations. Selfselection to groups allows anyone with an interest in a particular area to read, learn, leave
comments and discuss meanings of normal and disability in a relatively safe environment where
details of their identity are not exposed. Reducing the perceived control over some groups (not
all) by the medical establishment, users of forums can more freely question topics such as
treatment options than in their own doctor’s office. Non-disabled experts can dialogue with
disabled experts- ‘expert’ being a term the Internet has redefined as someone with consensual
credibility within a forum on a given topic.
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Critics of STS and the use of technology to theorize disability/normal state that online
forums and extreme avatar identities reproduce oppression due to the body becoming disengaged
from real-life identity, such that more extreme forms of oppression exist than in reality. While it
can be the case that extreme forms of vitriol can be practised, the vast spectrum of experiences is
advantageous to a vast array of new positive experiences with disability. The disembodied-body
also highlights the importance of the body in our culture (Young & Monica, 2012) –a previously
unconscious schema in the normal paradigm. This creates a new space for conversations about
experiences about the impaired body as part of a larger continuum of human-technology
configurations.
Further refinement of ideas taken from STS and techno-feminism is needed to understand
how these interactions might work in more detail. Galis (2011) proposes linkages between
disability studies and STS methods which can create hybrid-research models for cooperation
between disability experts. Bijker (2010) explains that all possibilities both negative and
positive exist in STS space and that technology is a seamless web of people, meanings and
knowledge. In this way relationships between normal, disability and materials effects like
architecture and accessibility features can be understood. Politics of the social model is
distributed throughout humans, non-humans and experts in order that new associations can
modify the collective according to Galis, (2011).
Researchers need to study the range of human and non-human actors which have the
ability to influence and transfer agency to other actors in the network. The focus of STS and
techno-feminism lies not with what disability/normal is, but rather how they are embedded in
larger processes that reproduce viewpoints. This interpretative flexibility does not privilege one
view over another, but can show in which direction a process is going (Sismondo, 2009).
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Fluidity of techno-feminism and STS allows boundaries to shift to allow reconceptualization of
disability in ways that the social and medical-sociological model don’t easily allow. Through
further work on exploration of interfaces between humans and technology using tools from
techno-feminism and STS, more inclusive models may become available for dialogue that avoid
usual the binary nature of normal/disabled to assist in finding common ground from which to
move equity and accessibility forward.
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