A Parábola dos
Cegos
| Cornelis Massijs/Corneille
Metsys (c. 1545)
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Abstract | This chapter explores the various theoretical approaches to understanding and defining disability. It focuses on giving a critical outline of four of the major explanatory models for disability: the biomedical model, the social model, the psychosocial model and the biopsychosocial model. The chapter includes some exploration of different cultural and contextual factors that may influence disability and sexual health issues, including some discussion of disability in relation to living conditions and experiences in different contexts. The medical model understands disability as resulting from an impairment, which in turn is caused by an underlying biological disorder, disease or deficit. As with other theorists criticising the social model of disability, Marks argues that the social model of disability excludes people's subjective experience from its analysis of disability. The cultural perspective, extensively covered in the field of cultural disability studies, tends to move away from economic questions while focusing on the cultural representations of disability.
What do we understand by the term ‘disability’? This may seem like an odd
question to many unfamiliar with disability studies. It may seem obvious to such
readers
what ‘disability’ means, or why we may refer to someone as ‘disabled’, and what
makes them disabled. But this is not straightforward, and if we look more
critically at our understanding of ‘disability’ we will see that this very much
depends
on where the experience of ‘disability’ lies, from which perspective and in
which
context. Is a person who makes use of a wheelchair ‘disabled’ because he or she
makes use of a wheelchair in and of itself, or are they disabled because they
face
stairs that prevent them from accessing a space? Is a person who is blind
‘disabled’
because they cannot see, or are they disabled because they cannot access written
information? Is an individual who is deaf ‘disabled’ due to the hearing loss, or
because most people are unable to communicate with them in sign language? Is
a white individual with albinism as ‘disabled’ as a black individual with
albinism?
Much of our understanding of disability involves a comparison to the ‘norm’ – we
understand ‘disability’ as distinct from ‘ability’ – distinguishing what is the
‘abnormal’
body from what is the ‘normal’ body. However, it is more than just comparison to
the norm (because the ‘norm’ after all is average); it is what comparatively is
seen as
‘sub-normal’ as opposed to the norm and the ideal (above normal); and so
‘disability’
equates with undesirable deviance. Where the boundaries of these concepts are,
is
not clear-cut. There is also not one unanimous understanding of what causes
disability. Many readers may say that it is a result of a medical condition or
biological
impairment. Others might say that disability is the experience of social and
environmental barriers to equal access; still others will understand disability
as ‘the will of
God’, ‘karma’ or a spell.
As readers will hopefully see in this chapter, ‘disability’ is a complex,
dynamic,
multidimensional and contested concept (WHO & World Bank, 2011). This is not
just a theoretical matter or concern; it is also political and personal. This
chapter will explore the various theoretical approaches to understanding and
defining disability. There are numerous theoretical models for understanding
disability and it
is beyond the scope of this chapter to look at each one of them. This chapter
will
primarily focus on giving a critical outline of four of the major explanatory
models
for disability: the biomedical model, the social model, the psychosocial model
and
the biopsychosocial model. For a fuller outline of the various theoretical
models,
readers would do well to read Goodley’s (2011) excellent introduction. In this
chapter we will also include some exploration of different cultural and
contextual
factors that may influence disability and sexual health issues, including some
discussion of disability in relation to living conditions and experiences in
different
contexts (low-, middle- and high-income contexts) and countries (with different
laws, policies, structures and health care systems).
‘Disability’ as a moral tragedy
Disability has always been part of the human condition, and all societies have
complex belief systems and practices related to health and disability (Groce,
1999;
Gronvik, 2007; Kleinman, 1980; Kleinman & Benson, 2006; WHO & World
Bank, 2011). Throughout history people with disabilities have been subject to
hatred, curiosity, fascination and sympathy, they have been made exotic, pitied,
patronised, ignored and admired (Goodley, 2011). We have mostly tended to see
‘disability’ as a tragedy and historically many societies have arrived at
supernatural,
spiritual and religious explanations for the ‘tragedy’ of disability (Goodley,
2011).
Such explanations typically take a moral position towards understanding
disability,
where disability is seen as a divine punishment for sin, evil or a failure of
faith
(Goodley, 2011). The presence of a disability brings shame to the individual and
their family as the public stigmata of their immorality. From this perspective,
disability can also be cured by divine intervention. The problem of ‘disability’
here
lies within the individual (his or her moral character specifically), who needs
to
be fixed and made right. For example, Hindu scripture teaches that the cause of
human suffering is due to wrongs committed in a past life, known as karma. Under
this system, disability is primarily seen as a result of fate, or kismet, in
areas where
such beliefs predominate, such as rural India. Although disability as a
consequence
of fate is often accepted as a punishment for misdeeds, Mehrota (2008) notes
that
this does not stop people with disabilities from seeking out pseudoscientific as
well as medical cures. Moreover, belief in divine causes of disability may lead
to
people without disabilities engaging in rituals to ward off the possibly of
becoming disabled. The commonality in these approaches is that disability is
seen as
something to be cured and not adapted to. In fact, these cultures may have a
long
tradition of marginalising people with disabilities through oral histories and
folk
songs (Mehrota, 2008).
However, this ‘moral’ model is not lost to history. For many cultures, it is
still
a dominant conceptualisation. Understanding of disability may also involve
concepts about evolutionary progress and development. Baynton (2013) observes
how along with conceptions of ‘normality’ and disability, are evolutionary ideas
about
progress, with the ‘sub-normal’ thus seen as an evolutionary step backwards.
Moral
ideas can come to play here, with people with disabilities historically often
being
seen as ‘defective’ and ‘primitive’ and thus their treatment as sub-human was
seen
as justified. Some of the moralising aspects of such perspectives still prevail,
as can
be seen by the contemporary discourse in the UK (and elsewhere) of the moral
neo-liberal citizen, with discourses contrasting those moral citizens who
contribute to society and the immoral ‘scroungers’ who do not (Garthwaite,
2011). Or
where barriers to achievement for people with disabilities are seen as only
because
of a ‘bad attitude’ (Young, 2012). Those with visible, severe disabilities may
be
excluded from this as charitable cases.
What at first was regarded as a moral tragedy, disability in recent decades came
to
be seen as a medical tragedy. The development of what has come to be known as
the
medical model of disability for many years dominated our understanding of
disability.
The medical model of disability
In more recent history disability has been seen as a medical condition, defined
through a biomedical model, which focuses on impairment (Gronvik, 2007;
Officer & Groce, 2009). The medical model understands disability as resulting
from an impairment, which in turn is caused by an underlying biological
disorder, disease or deficit. This was once the model adopted by the World
Health
Organization in their definition of disability as “any restriction or inability
(resulting from impairment) to perform an activity in the manner or within the
range
considered normal for a human being” (WHO, 1980, p. 1). As with the ‘moral’
model, the medical model also offers an individualistic understanding of
disability, referring to deficits in the body, something missing in the
individual: a
limb, an organ or a mechanism in the body (Finkelstein & French, 1993; Harpur,
2012; Officer & Groce, 2009; Shakespeare, 2014; Shakespeare, Iezzoni, & Groce,
2009). As Edwards (1997) pointed out, the medical model characterises disability
as intrinsic to the individual, resulting from impairment and is context
neutral. In
this model, the disabled individual suffers a medical tragedy that could be
‘fixed’
by means of medical intervention. The disabled individual is alterable, while
the
assumption is made that the environment remains fixed (Barnes & Oliver, 1993).
It has been argued that the medical model is backward-looking and reactionary
(Shakespeare, 2014), with its lack of focus on social factors, such as
discrimination,
prejudice and inaccessibility (Officer & Groce, 2009), and as such has
contributed to the oppression and marginalisation of people with disabilities
(Bricher,
2000; Officer & Groce, 2009; Thomas, 2004). Practitioners of Western biomedicine
have traditionally, and often continue to, reinforce the medical model of
disability through their medical practice (Bricher, 2000; Gronvik, 2007),
focusing on causes, consequences and treatment of the disabling conditions
(Gronvik,
2007; Shakespeare et al., 2009). One must not forget, however, that people with
disabilities do have health conditions and can often benefit from medical care.
The main limitation to the medical model lies not in its focus on medical
conditions, but rather in its lack of focus on structural issues that contribute
to disability,
such as poverty, environmental barriers and social exclusion (Shakespeare, 2014;
Shakespeare et al., 2009).
As a result of these criticisms, the past decades have seen a shift from
disability
viewed as a personal predicament, as in the biomedical model, to a more critical
perspective, where disability is viewed as a social, cultural and political
phenomenon (Goodley, 2011).
The social model of disability
In the 1970s, disability activists, particularly in the UK, began to challenge
the
individualistic, medical understandings of disability. One of the most
influential disability groups at that time, the Union of the Physically Impaired
Against
Segregation (UPIAS) was most vocal in challenging the medical model of
disability, stating that “it is society which disables physically impaired
people. Disability is
something that is imposed on top of our impairments, by the way we are
unnecessarily isolated and excluded from the full participation in society”
(UPIAS, quoted
in Barton, 1998, p. 56). This definition was developed further by disability
academics, particularly Oliver (1986, 1990, 1996), to what has come to be known
as
the social model of disability. This model sees disability as a social
construct, with
physical and social barriers leading to lack or loss of opportunities preventing
people with disabilities from taking part in everyday life on an equal level
with others
(Finkelstein & French, 1993; Harpur, 2012; Shakespeare, 2014). So, for example,
a person with a physical impairment who makes use of a wheelchair, is disabled
when they face an inaccessible building where stairs are the means of access. Or
a
person who is deaf, is disabled when they can only access specific information
in
audio format. From this perspective, disability is seen as a form of social
oppression,
where disability is understood as representing the “social, financial,
environmental
and psychological disadvantages inflicted on impaired people” (Abberley, 1987,
p. 17). This arises from a social environment that is constructed by
non-impaired
people, and constructed in their interests (Abberley, 1998). People with
disabilities
may also face social barriers, resulting from social stigma and negative
representations in the media (see Chapter 3 for a brief discussion in relation
to film). In
relation to the topic of this book, such stigmatising representations may be
that
of people with disabilities as non-sexual and undateable. According to the
social
model, it is not the individual that needs to be fixed and altered, but rather
the
social and physical environment that needs to be adjusted in order to meet the
needs of persons with disabilities.
While the medical model is seen as having contributed to the oppression and
marginalisation of people with disabilities, the progressive social model has
been
assumed to involve and empower people with disabilities (Bricher, 2000; Officer
& Groce, 2009; Shakespeare, 2014; Shakespeare et al., 2009; Thomas, 2004). The
limitation to the social model, on the other hand, lies in its lack of focus on
the
impact of impairment on disability (Thomas, 2004). Some theorists (Hughes &
Paterson, 1997; Shakespeare & Watson, 1997) have criticised the social model of
disability for excluding the lived experience of impairment. As argued by French
(1993a, p. 17): “I believe that some of the most profound problems experienced
by
people with certain impairments are difficult, if not impossible, to solve by
social
manipulation.” French distinguishes between her blindness, which she argues
should be conceptualised as impairment, and her lived experience of disability,
for
example due to the availability of literature accessible largely to sighted
persons. It
has also been argued that the social model, with its origin in physical and
sensory
impairments, to a large extent neglects issues relevant for people with
psychosocial
and developmental disabilities (Chappell, Goodley, & Lawthom, 2001). Adding to
this, the social model has been criticised for being too general in its approach
to
the human experience that disability is, with too little emphasis on the
individual,
contextual and cultural variations that shape these experiences (Dewsbury,
Clarke,
Randall, Rouncefield, & Sommerville, 2004; Shakespeare, 2014).
The psychosocial model of disability
As with other theorists criticising the social model of disability, Marks
(1999a,
1999b) argues that the social model of disability excludes people’s subjective
experience from its analysis of disability. She develops a psychosocial model of
disability
by arguing that ‘disability’ involves a relationship between the environment and
the body as well as the person’s psyche. She insists that “disability does not
reside in
a particular body or environment, but rather is an embodied relationship”
(Marks,
1999b, p. 611). In theorising the psychological aspects of the model, she draws
predominantly on psychoanalytic theory to argue how prevailing negative
stereotypes
and social and cultural oppression of people with disabilities are internalised
by the
person with disability to become an embodied experience. In psychoanalytic
theory ‘internalised oppression’ (like internalised homophobia) can be read by
some as
pathologising, in that it places the ‘problem’ of oppression in the internal
psychology of the individual (Russell & Bohan, 2006). Oppression of course,
exists in the
external realities, but the usefulness of this psychosocial approach is that it
allows us
to understand how these experiences can be incorporated, or indeed rejected, by
the individual, shaping their sense of self.
Marks (1999a) provides a review of the historical representations of persons
with disability. For example, she refers to the representations of superstition
and
divine punishment with regards to persons with disabilities during the Middle
Ages
(see above discussion on the moral model of disability). In later years, people
with
disabilities were exhibited in public shows as ‘freaks’ and objects of curiosity
– the
‘Elephant Man’ being a famous example of this. She also refers to the disturbing
history of eugenics, euthanasia and even the systematic murder of people with
disabilities during the 1940s in Nazi Germany. Marks uses these examples to
illustrate
the fear and revulsion often expressed towards people with disabilities, seen as
subhuman monsters. Thankfully, we do not live in those times anymore, but what
she
argues is that the response (often unconscious) of fear, deformity and
monstrosity
towards many people with disabilities still prevails. This is evident in the
prevalence of everyday hate crimes towards persons with disabilities.
Drawing on psychoanalytic theory, Marks (1999a) and others argue that
unacceptable parts of the self, such as the notion of dependency, physical
imperfections
and damage, helplessness and vulnerability, may be disavowed or split off by the
person without disabilities, and located in the person with disability (Marks,
1999a;
Shakespeare, 1994; Watermeyer, 2013). In psychoanalytic terms, this process of
disavowal is done in an attempt to protect the self against such threatening
aspects
of human experience. As Marks (1999a) and many others argue, we live in an
increasingly narcissistic culture, where individuals strive for perfection,
independence and achievement. As Shakespeare (1994, p. 297) states, persons with
disabilities
“remind non-disabled people of their own vulnerability”. There is a denial or
disavowal on the part of people without disabilities of their physical
vulnerabilities
and mortality, which is then projected onto people with disabilities who come
to represent this vulnerability, becoming “dustbins for disavowal” (Shakespeare,
1994, p. 283). Watermeyer (2006) points out how we have all at some stage of
our lives had experiences of vulnerability, dependence, shame, rejection,
inadequacy and feeling undesirable, ugly and unacceptable. He goes on to argue
that
“by constructing and regarding disabled people as broken, damaged, defective and
dysfunctional, members of the broader nondisabled society are able to reaffirm
and reinforce an identity of being the opposite of those unwanted
characteristics” (Watermeyer, 2006, pp. 33–34). Marks (1999a, p. 25) notes
“denigration and
exclusion as the two key forms of psychic oppression suffered by disabled
people”,
which are then internalised by some people with disabilities and impact on their
self-esteem, and may often keep people with disabilities submissive. Sinason
(2001)
refers to a “secondary handicap” that occurs, which she refers to as the
“defensive,
extra-handicapping that comes from the emotional pain at being different”; of
being the “other” (p. 2). According to these theorists, the person with
disability
can be locked in a dynamic interrelationship with others who do not have
disabilities in an attempt to manage the anxieties that the disabilities cause.
In sociology,
this is similar to what Goffman (1963) refers to as the management of a
stigmatised
identity. French (1993b) provides a good personal example of this: She describes
how family members would anxiously try to get her to see things, to see a
rainbow,
for example. This she felt was out of an attempt to manage their own fear and
anxiety with regards to her increasing loss of colour vision. She describes how
she
eventually attempted to alleviate others’ anxieties, by declaring that she could
see,
denying the fact that she could not.
In contrast to the sort of denigrating process of projection described above,
psychoanalytic theory has also been useful in describing the idealisation of
persons
with disabilities as a defensive process (Marks 1999a; Watermeyer, 2013). In
idealisation, the unwanted fears and underlying denigration are defended against
by a
process of idealisation where the disabled person is attributed with excessive
positive
aspects and admiration. There are many instances where we are called to admire
the
achievements of people with disabilities and how they have overcome their
personal
tragedy. This idealisation can be seen in the everyday prevalence of what some
have
termed ‘inspiration porn’, where stories of ‘heroic’ individuals who have
overcome
their personal tragedy of disability are admired. The term was used by
disability
activist Stella Young (2014) – she gives an excellent TED talk about this that
is
worth seeing (“I’m not your inspiration thank you very much”). We can observe
this in reference to the ‘superhuman’ Paralympian, for example. Young (2014)
states
how this only serves to objectify people with disabilities for the benefit of
people
without disabilities to make them feel better about themselves.
For Reeve (2002, 2012, 2014), internalised oppression arises not only from the
relationship that people with disabilities have with others, or themselves
(which
she calls ‘direct psycho-emotional disablism’), but from the relationship they
have
with their environment, termed ‘indirect psycho-emotional disablism’. She does
not draw on psychoanalytic theory (in fact she is quite critical about
psychotherapy, because of its individualist tendency), but rather comes from a
more discursive
position, noting that psycho-emotional disablism is caused by oppressive social
practices, including the oppressive discursive actions exercised by society on
people
with disability. She also notes that the experience of being faced with a
structural
barrier, such as an inaccessible building, may evoke negative emotions like
anger or
distress. Moreover, inaccessible environments are a frequent experience for
people
with disabilities and may prevent them from accessing vital services such as
sexual
and reproductive health care (Anderson & Kitchin, 2000). Kitchin (1998) argues
that such repetitive experiences serve to remind people with disabilities that
they
are ‘out of place’, which Reeve (2012) suggests has consequent negative
implications for their sense of self and emotions. What the social
psychoanalytic approach
(Watermeyer, 2013) provides is a model for understanding how these discursive
oppressive relationships get internalised.
Cultural disability studies
While the medical and social models for disability have remained the most
influential and most debated models for disability, other suggested models have
also
emerged over the years, such as the tragedy model, the affirmative model, the
charity model (Swain & French, 2000), the minority group model, the social
constructionist model and the relational model (Shakespeare, 2014). It is beyond
the
scope of this chapter to discuss all of these. A common characteristic to most
of
these models is that they have moved away from the individualistic, medical view
of disability, towards a view promoting social inclusion for people with
disabilities
(Shakespeare, 2014). One important limitation to the models described so far
that
is important to highlight is that issues of culture and identity have been
relatively
neglected (Shakespeare, 2014). The argument has been made that these disability
models, largely developed in the global North, contribute to the marginalisation
of the disability experience in the global South (Meekosha, 2011). The cultural
perspective, extensively covered in the field of cultural disability studies,
tends to
move away from economic questions while focusing on the cultural representations
of disability. The weakness of this field, however, has been said to be that it
speaks more to academics than to advocates and policy makers, and as such has
not
been influential on the political disability agenda (Shakespeare, 2014). All
societies have complex belief systems and cultural interpretations related to
disability,
which are as important in shaping the disability experience as the specific
health
condition related to the disability (Groce, 1999; Gronvik, 2007). For instance,
in
many African cultures people base their disability understandings on local
knowledge systems, where mental and physical impairments are attributed to
animistic
causes, such as witchcraft, ancestors’ anger, breach of taboo or punishment from
God (Braathen & Ingstad, 2006; Groce, 1999; Groce & Zola, 1993; Helman, 2007;
Ingstad, 1995, 1997, 1999; Ingstad, Bruuns, & Tlou, 1997; Ingstad, Munthali,
Braathen, & Grut, 2012; Kleinman, 1980; Munthali, Braathen, Grut, Kamaleri, &
Ingstad, 2013; Ross, 2008; Sentumbwe, 1995; Whyte & Ingstad, 1998). Adding to
this, disability is sometimes thought to be contagious (Braathen & Ingstad,
2006;
Smith, Murray, Yousafzai, & Kasonka, 2004). With these beliefs and
interpretations follow assumptions about how individuals with disabilities
should be treated
and what rights and responsibilities they have (Groce, 1999). These beliefs and
assumptions have in some instances led to people treating the disabled
individual
in a positive, mythical and elevated manner, or on the other hand, in a fearful,
disrespectful and excluding manner (Braathen & Ingstad, 2006; Groce, 1999; Whyte
& Ingstad, 1998). The treatment is largely dependent on whether the attribute of
disability is a valued or devalued attribute in that particular setting, context
and
culture (Groce, 1999). We will return to discuss culture again briefly in
Chapter 3.
The biopsychosocial model of disability
Based on the argued shortcomings of the disability models described above, an
attempt at a more balanced approach to understanding disability has been
developed
over the past two decades (Leonardi, Bickenbach, Ustun, Kostanjsek, & Chatterji,
2006; WHO & World Bank, 2011), presented in the International Classification of
Functioning, Disability and Health (ICF) (WHO, 2001). The ICF conceptualises
disability as both a social and medical construct, a dynamic interaction between
health conditions and contextual factors; both personal and environmental (WHO
& World Bank, 2011), and as such integrates components of the medical and
social models for disability, as well as cultural disability studies
(Shakespeare, 2014).
This model for disability is known as the ‘biopsychosocial model’ (WHO, 2001).
In the World Report on Disability (WHO & World Bank, 2011, p. 4), based on
the ICF, disability is described in the following way: “Disability is the
umbrella
term for impairments, activity limitations and participation restrictions,
referring
to the negative aspects of the interaction between individual (with a health
condition) and that individual’s contextual factors (environmental and personal
factors).”
It has been argued that the ICF is theoretically underdeveloped, and does not
adequately explore the complex dynamics between health conditions, individual
characteristics, social and cultural context and so on. It has been criticised
for failing
to fully acknowledge and account for distinctions between ‘activity limitations’
and
‘participation restrictions’ and also between ‘impairment’ and ‘activity
limitation’
(Bickenbach, 2012; Davis et al., 2012; Imrie, 2004; Shakespeare, 2014). However,
others argue that the framework is the definition that best captures all aspects
of
disability. It highlights the interactive and dynamic nature of disability;
acknowledging both individual health status as well as personal and
environmental factors in
the disability experience (Leonardi et al., 2006; WHO & World Bank, 2011). The
definition is seen as a contributor to equal rights, opportunities and
participation in
society for people with disabilities (Leonardi et al., 2006).
Because the disability experience is shaped both by the social context as well
as by medical conditions, disability is essentially a human rights issue as well
as
a medical concern (Groce, 1999; Officer & Groce, 2009). All human beings are
protected by the Universal Declaration of Human Rights (United Nations, 1948).
Despite this, people with disabilities have been, and continue to be, denied
many of their basic human rights (Harpur, 2012; Officer & Groce, 2009). In
2006 the United Nations Convention on the Rights of Persons with Disabilities
(UNCRPD) was developed (United Nations, 2006). The convention is perceived
by many as a shift in how disability is viewed, and as a major step forward for
people with disabilities (Meekosha & Soldatic, 2011). The purpose of the
convention is to “promote, protect and ensure the full and equal enjoyment of
all human
rights and fundamental freedoms by all persons with disabilities, and to promote
respect for their inherent dignity” (United Nations, 2006, p. 4). In the
convention, disability is defined the following way: “Persons with disabilities
include
those who have long-term physical, mental, intellectual or sensory impairments
which in interaction with various barriers may hinder their full and effective
participation in society on an equal basis with others” (United Nations, 2006,
p. 4).
While the UNCRPD is based on the ICF (Officer & Groce, 2009), it has been
argued that the definition of disability adopted by the convention is too
medical,
restricted to people with long-term impairments, while ignoring level of social
participation. As a result, the convention risks excluding a number of
short-term,
fluctuating or episodic impairments (Leonardi et al., 2006). Adding to this, it
has
been argued that the convention is largely influenced by disability discourses
of
the global North, and as such fails to sufficiently address experiences of
people
with disabilities in the global South (Meekosha & Soldatic, 2011). There are
wellestablished associations between disability and poverty, poor health
outcomes and
poor access to health and social services, education and employment; all of
which
are far more pronounced and prevalent in the global South than in the global
North (Eide & Ingstad, 2011; Elwan, 1999; Groce & Trani, 2009; WHO &
World Bank, 2011). It has been argued that one cannot separate disability from
other social and health issues, and that disability issues cannot be
appropriately
addressed without also considering issues of global power and wealth imbalances
(Grech, 2009; Soldatic, 2013). As outlined in Chapter 1, most people with
disabilities in the world live in relative poverty.
The biopsychosocial model may offer a useful route to understanding the
complex ways in which people with disabilities may express their sexuality, or
be
prevented from doing so by individual, structural or social barriers. Recent
definitions of sexuality, such as that provided by WHO (2006a), position the
ability to
lead a healthy sexual life as a human right for all. Similarly, the
biopsychosocial
model acknowledges that disability is partly created by social factors, thereby
framing it as a human rights concern (Groce, 1999; Officer & Groce, 2009).
Therefore,
this model provides a useful heuristic device by which to understand the ways
in which the sexual lives of people with disabilities are variously facilitated
and
obstructed around the globe. However, the biopsychosocial model does not go
far enough to question assumptions of ‘normality’ and ‘abnormality’ and thinking
more about the context of disability. This, for us, is particularly important
when challenging normative assumptions about sexuality, and what is ‘normal’ and
‘abnormal’ sexuality. In that respect, crip theory offers us a valuable
framework to
critique assumptions.
Crip theory
The foregoing models that offer a critical perspective to disability (in
contrast to
the medical model) all conceptualise disability as a construction dominated by
barriers, the experience of which prevent people with disabilities from
participating
fully in society. On the other hand, the aim of crip theory, first proposed by
McRuer (2006), is to radically challenge the demarcation between what is
considered ‘normal’ and ‘abnormal’. In doing so, crip theory asserts the
existence of
a distinct disabled identity and culture, whose members must challenge
pejorative
terms applied to people with disabilities and appropriate them. This is why the
theory’s name is shorthand for the term ‘cripple’, an intensely offensive term
for
a person with a physical disability. That is, the usage of ‘crip’ is designed to
be
provocative and present a route of attacking stigmatised constructions of
disability
through labelling oneself a ‘crip’ as a badge of pride. Crip theory is situated
squarely
within critical disability studies and has been described as providing one of
the most
valuable insights within the discipline (Goodley, 2014).
Crip theory combines the fields of disability studies and queer theory. However,
while both theories aim to trouble constructions of normality, crip theory
shifts the
focus from the demarcation between heterosexuality and homosexuality to the one
that exists between the abled and functionally impaired body (Löfgren-Mårtenson,
2013). McRuer (2013) argues that both sets of constructions are interwoven with
one another, that ‘abnormal’ is contextualised by what is ‘normal’ and vice
versa.
This does not mean that normal and abnormal identities are situated as equals,
but
rather denotes that what is institutionalised as ‘normal’ thereby also
subjugates what
is considered ‘abnormal’. He further argues that the existence of normalcy
within
these systems produces compulsion to belong to the dominant category (i.e.
heterosexuality, the able body), while, at the same time, the obverse desire to
avoid
association with the subordinated categories (i.e. homosexuality, the
functionally
impaired body) also acts on the individual. Therefore, the appearance of choice,
for
example in terms of sexual preference, is viewed as an illusion to mask
compulsion
towards normalcy. These phenomena are known as compulsory heterosexuality
and compulsory able-bodiedness within queer theory and crip theory respectively
(McRuer, 2013).
Theorists within queer disability studies argue that there is much to learn from
the intersectionality embedded within a queer/disabled existence (e.g. Goodley,
2014; Sherry, 2004). In this vein, it has been highlighted that queer identities
share a common history of medicalisation with disabled identities, for instance,
that homosexuality used to be considered a disorder, and thus a ‘disability’
(McRuer, 2013). As such, viewing those with queer identities as disabled may
pave the way to trouble constructions of able-bodiedness. Similarly, people with
disabilities are often viewed as non-sexual or hypersexual (assumptions we will
revisit in Chapter 3), identities that are ‘queer’ compared to the
institutionalised
norm of heterosexuality. Such queering helps disabled identities challenge this
dominant pathology. For McRuer (2013), a queer/disabled existence will never
manage to dissipate constructions of normalcy. He suggests such constructions
are ultimately impossible to embody, and that rather it is the disabled
identities
that are inevitable, given that able-bodiedness is temporary and may be lost
with
age. However, as marginalised identities themselves are necessary for dominant
identities to exist within such systems, a queer/disabled existence is always in
danger of disrupting normalcy.
We are now in a clearer position to appreciate how crip theory critiques what
other models of disability take for granted, namely that there is a ‘normal’
existence that people with disabilities are somehow excluded from. The dialogue
of
crip theory is emancipatory, which Sykes (2009, p. 250) terms a “narrative of
attack”. However, as we have seen above, its aim is not to eradicate
constructions of normalcy, which McRuer (2013) deems impossible, but to demand a
reappraisal of able-bodiedness and to build transformative space in which social
participation does not rest on the functional body. In this respect, Goodley and
Lawthom (2011) recount the example of a youth with a disability, Alex,
discussing sexual topics, such as masturbation and girls he is attracted to,
with his
mother, Isobel. They suggest that such exploration of material conventionally
located in private spheres challenges typical discourses that surround disabled
and
youthful bodies.
Notwithstanding crip theory’s usefulness to disability studies, it has been
criticised for not offering a similar emancipatory discourse to people with
intellectual
disabilities (Löfgren-Mårtenson, 2013). That is, crip theory has tended to be
written mostly from the perspective of physical disabilities and challenging
assumptions
of normality and the body; crip theory does not draw a distinction between types
of disability (see McRuer, 2006, 2013). Furthermore, given that the aim of crip
theory is to galvanise people with disabilities who can understand their
situation,
the applicability of crip theory in general to people with intellectual
disabilities has
been questioned (Löfgren-Mårtenson, 2013).
Concluding comments
We have outlined some of the many models for understanding disability. What
do models of disability mean for people with and without disabilities? And which
one is right? Researchers have argued that explanatory models for disability are
crucial in limiting or ensuring the realisation of human rights for people with
disabilities (Bricher, 2000; Harpur, 2012; Siminski, 2003). The models provide a
starting point for disability-related research, practice, theory and everyday
living
(Chappell et al., 2001). Moreover, any two individuals may find that different
models of disability resonate with them, especially if they are living in
different
areas of the world. For instance, although the moral model is considered
outdated
by many, it is still the dominant conception of disability within several
cultures.
Our intention in presenting this overview of models of disability is to equip
you,
the reader, with the knowledge necessary to understand disability in a way that
is
meaningful to you.
Note: Parts of this chapter are adapted from the PhD theses of Stine Hellum Braathen
and Poul
Rohleder.
ϟ
'Understanding Disability'
is an excerpt
of
DISABILITY AND
SEXUAL HEALTH
A Critical Exploration of Key Issues
authors:
Poul Rohleder, Stine Hellum Braathen and Mark T. Carew
Routledge, 2019
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