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Intellectual Disability: A Critical Concept Analysis

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 Research and Theory for Nursing Practice: An International Journal, Vol. 29, No. 4, 2015

Intellectual Disability:
A Critical Concept Analysis

Pierre Pariseau-Legault, RN, PhD(c)

Dave Holmes, RN, PhD
School of Nursing, University of Ottawa, Ontario, Canada

Over the last number of years, the emergence of new scientific and social construc-
tions of intellectual disability has contributed to many terminological, conceptual,
and structural changes. As a result, the expression “mental retardation” has gradually
been abandoned in favor of “intellectual disability” for classification and diagnosis.
In addition to helping redefine intellectual disability, the implementation of new
deinstitutionalized mechanisms of governmentality required the adoption of differ-
ent clinical models. Concrete applications of those models have yet to be studied
in nursing practice. The main objective of this article is to analyze the concept of
intellectual disability in light of recent developments to clarify its philosophical
bases, influence, and relevance for clinical practice. This concept analysis was real-
ized following a literature review of scientific articles and monographs addressing
topics related to intellectual disability. Inspired by a poststructuralist approach, we
will discuss about the ambiguity of nurses’ role regarding people labeled as hav-
ing an intellectual disability. Lastly, we will address the clinical implications of our
analysis and we will propose an actualized understanding of the nursing practice
in such context.

Keywords: concept analysis; foucault; intellectual disability; nursing

O
ver the last number of years, the emergence of new scientific and
social constructions of intellectual disability has contributed to many
terminological, conceptual, and structural changes (Schalock et al.,
2007). Today, these changes shed new light on a condition that was, until
recently, generally considered innate (American Association on Intellectual and
Developmental Disabilities [AAIDD], 2010). As a result, the expression “mental
retardation” has gradually been abandoned in favor of “intellectual disability” for
scientific classification and diagnosis. This is currently the most commonly used
clinical term (Salvador-Carulla et al., 2011), although the American Psychiatric

© 2015 Springer Publishing Company249

http://dx.doi.org/10.1891/1541-6577.29.4.249

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250 Pariseau-Legault and Holmes

Association (2013) recognizes as an interchangeable synonym the phrase

“intellectual developmental disorder” recently proposed by the World Health
Organization, hereafter WHO (2014). This statement reflects the fact that intel-
lectual disability is classified as a neurodevelopmental disorder for the American
Psychiatric Association.
Another substantial change intimately connected to the adoption of this termi-
nology concerns the shift toward an ecosystemic perspective and the subsequent
recognition of the interaction between people and their environments (AAIDD,
2010). This change has contributed to the redefinition of the fundamental con-
cepts of intellectual disability. The normalized evaluation of adaptive abilities has
therefore become a prerequisite for an intellectual disability diagnosis (Wehmeyer
et al., 2008).
The application of these new criteria has not been limited to clinical use,
however. The deinstitutionalization movement that has taken place in many
countries has been driven by the desire to put an end to the institutional confine-
ment of persons with intellectual disabilities, a practice marked by numerous
abuses. Repressive dividing practices such as segregation, forced confinement,
and forced sterilization are the most shocking legacies of government policies
that expedited the institutionalization and legitimization of eugenicism (Law
Reform Commission of Canada, 1979). In addition to helping redefine intellectual
disability, the implementation of these new deinstitutionalized mechanisms of
governmentality (Foucault, 1978) required the adoption of intervention models
based on principles of normalization (Burrell & Trip, 2011) whose purpose implies
the acceptance of valued social roles (Wolfensberger, 2011). In the last decade,
the gradual recognition of the fundamental rights of people “labeled as intellec-
tually disabled” has also taken place. For example, the Montreal Declaration on
Intellectual Disability (WHO & Pan American Health Organization, 2004) and the
United Nations (UN, 2006) Convention on the Rights of Persons With Disabilities
reaffirm the need to respect the dignity, integrity, and right to self-determination
of persons “labeled as disabled.” Despite this, numerous inequalities still affect
this population today (WHO, 2011).
Although deinstitutionalization is a project whose realization remains unequal
and hypothetical, the recent integration of people “labeled as intellectually disabled”
into frontline services and the establishment of specialized services throughout
the community call for a reevaluation of the kind of support provided. Elements
of nursing practice must also be reexamined to address the ambiguity of nurses’
roles in this context (Galvin & Timmins, 2010). The tendency of health profession-
als to see people “labeled as disabled” as a homogeneous group is an invitation
to question the clinical practice of nurses working with them and ensure that
the care and services provided respect patients’ rights, autonomy, and specific
needs. Following Scullion (2010), this article argues that the accomplishment of
such a goal will require analyzing the concept of intellectual disability in light of
recent developments to clarify its philosophical bases, influence, and relevance
for clinical practice.

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Intellectual Disability251

METHODOLOGY

To identify articles relevant for this concept analysis, a search was performed in the
Cumulative Index to Nursing and Allied Health Literature (CINAHL) database, for the
years 1999–2014. First, the term intellectual disability was used without limiting terms
(7,991 results). The search was then refined by limiting results to article titles (1,243
results) and adding the term nurs* in all fields (90 results). Only articles published
in peer-reviewed scholarly journals and whose complete texts were available were
retained and reviewed (46 results). The terms learning disability, intellectual develop-
ment disorder, and mental retardation were not included in the search, in keeping with
the focus of this study on the concept of intellectual disability. Articles discussing
comorbidities associated with mental illness were retained. Several monographs
were consulted as complementary sources to help define the concepts discussed
and refine the proposed theoretical framework.

DEFINITION OF CONCEPTS

Intelligence: General Considerations

Although the Oxford English Dictionary simply defines intelligence as the “. . . faculty
of understanding . . .” the consensus that would be required to establish a universally
accepted clinical definition does not exist. Intelligence is an abstract concept that
many theories have attempted to define over the years (AAIDD, 2010; Loranger &
Pépin, 2003). In 1927, Spearman proposed measuring intellectual function with a
single factor: the general intelligence (g) factor. Most psychometric exams currently
used to measure intellectual function still refer to this factor (AAIDD, 2010). Several
theories of intelligence have followed Spearman’s proposal and contributed to the
emergence of a multidimensional vision of intelligence. A recent concept emerg-
ing from within the information technology paradigm (Loranger & Pépin, 2003),
the triarchic theory (Sternberg, 1985), defines intelligence first and foremost as
an adaptive activity rather than as a trait discernible by psychometric measures
(Hunter, 2009; Sternberg, 1985). Thus far, the elusive nature of both the concept
and its definitions has hindered the validation of recent theories of intelligence
through standardized, quantifiable, and verifiable methods (AAIDD, 2010). This is
undoubtedly the reason why a unidimensional conceptualization of intelligence
remains the most recognized theoretical framework; it provides a psychometric
measure of intellectual function through the intermediary of the g factor (AAIDD,
2010). This measure is currently required for diagnosing intellectual disabilities.

Disability: General Considerations

Based on the International Classification of Functioning, Disability and Health (here-
after ICF), the WHO (2001, 2011) distinguishes three areas associated with difficulties
in human functioning that could contribute to disability: impairments (a variation

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252 Pariseau-Legault and Holmes

in human structures or functions), activity limitations, and participation restriction.

This last refers to impairments and limitations in performing what Chapireau (2001)
calls “normal roles.” For the WHO (2011), these three domains of disability must be
distinguished, despite their interconnections and their interaction with personal/
environmental factors. For a disability to exist, there must be an underlying medical
condition, disorder, or disease (WHO, 2011). This is an important nuance because
the International Classification of Diseases (hereafter ICD-10), also developed by the
WHO (2010), proposes to change the term mental retardation to intellectual develop-
ment disorder in the next version of the ICD, scheduled for 2015 (Salvador-Carulla
et al., 2011). Not only would this change in terminology conceptualize this condition
as an illness rather than a disability (Salvador-Carulla et al., 2011) but it would also
incorporate it into the broader, ecosystemic conceptual framework put forward by
the ICF (WHO, 2001). As a result, the conceptual framework proposed by the WHO
seems to be situated at the crossroads of an important historical debate, one that
categorizes (which necessarily entails naming, classifying, and evaluating) intel-
lectual impairment either as a mental condition or a disability (Salvador-Carulla
et al., 2011).

Intellectual Impairment/Disability: General Considerations

In addition to the multiplicity of terms currently used to describe this condition,
there also exists various classification instruments, an overview of which reveals
certain points of convergence. Although it would be logical to consider that those
criteria are related to intellectual impairment rather than intellectual disability,
Garcin (2003) notes that it is generally understood that intellectual disability can
be recognized by significant limitations in (a) intellectual function and (b) adap-
tive abilities that (c) appear during development. This is maybe because of a lack
of consensus of a universally accepted definition (Garcin, 2003) and, as we will
see, a conceptual blurring between impairment and disability related to a complex
cohabitation of different explicative models. Although having a definition similar to
Garcin, AAIDD (2010) notes that those criteria must be assessed in an individual’s
and environmental context.

RESULTS

Theoretical Perspectives
The concept analysis proposed here is based on the work of Michel Foucault, who
provides a theoretical orientation that lends itself to the study of the concept of
power within the health care context and within nursing science more specifically
(Holmes & Perron, 2006). For Foucault (1975), knowledge and power are recipro-
cally connected and contribute to the subjugation of populations as well as to the
reality of what can be said, written, or thought (McHoul & Grace, 1997). Within this
framework, power seeks not to punish but, on the contrary, to take hold in every
aspect of life (Foucault, 1976) and transformed into a productive force. This does not

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Intellectual Disability253

guarantee the traditional (hierarchical, vertical, and centralized) interpretation of the

organization of power but is instead distinguished by polymorphic forms (Holmes
& Perron, 2006). Deleuze (1990) adds that controlling societies are recognizable by
their ability to infiltrate themselves within civil society and are no longer limited to
institutional fields of activity (i.e., hospitals, schools, prisons). The state is able to
ensure the control of its population through disciplinary and normative mechanisms
that constitute the population’s anatomico-political and biopolitical operational
arms, as described by Foucault (1976). For him, these two poles of bio-power are
characteristic of governmentality or the rationality of modern states. In this way,
power is exerted in all spheres of society, including through the care provided by
health professionals who are themselves subject to these various forms of power
(Perron, Fluet, & Holmes, 2005).
For Foucault (1976), anatomico-politics is an individualizing, disciplinary power
that seeks to subdue individuals by training, evaluating, and imposing micrope-
nalities to correct deviance (Perron et al., 2005). This complex process trains the
body-machine through mechanisms such as observation, evaluation, normalization,
and inspection (Perron et al., 2005). Surveillance is key to the deployment of such a
mechanism. In what Foucault (1975) describes as panopticism, a term derived from
Bentham’s panopticon (1843), observation creates a sense of constant visibility despite
discontinuous surveillance (Foucault, 1975). This process allows both the collection
of information on and self-regulation of the subject. The anatomico-politics of the
body consists of individualizing techniques and procedures that seek to subdue
individuals by simultaneously exploiting their strengths, aptitudes, and docility.
The biopolitics of the population, on the other hand, is a normalizing, macroscopic
power that attempts to control the overall population rather than individuals. It is
situated in an open and unconfined space. Its disciplinary logic seeks above all to
reach a multiplicity of individuals too large to be thoroughly restrained (Macmillan,
2010, pp. 52–53). This type of power is primarily interested in mass phenomena (birth
rate, mortality, quality of life, etc.) focused on human beings and their numerous
biological processes (Macmillan, 2010). Surveillance, mentioned earlier, allows the
accumulation of a considerable amount of information on the general population,
and this contributes to the creation of normative instruments and governmental
policies that distinguish the normal from the abnormal, result in the medicaliza-
tion of difference, and ensure the preservation of the aforementioned institutions
of power. The biopolitics of the population is distinguished by the use of statistical
data and the creation of expert discourses that “. . . categorize, classify, distinguish,
and exclude . . .” (Perron et al., 2005, p. 541).
Although the distinction between anatomico- and biopolitics may seem tenu-
ous at times, the rationality of each phenomenon is quite different. Although the
anatomico-politics of the body individualizes and takes hold in the individual, the
biopolitics of the population stratifies, administers, and organizes the social body by
producing numerous indicators and statistics to document the population’s health,
productivity, and growth. These two poles are not, however, mutually exclusive,
and their interactions are multiple, continuous, and complementary. These two
forms of bio-power also contribute to a process of objectification that contributes

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254 Pariseau-Legault and Holmes

to the transformation of individuals into subjects. Foucault categorizes this process

into three modes: dividing practices, scientific classification, and subjectification
(Foucault, 1982, 1984). Although the two first modes are apparent when we talk
about institutional confinement and classification of people labeled as “intellectu-
ally disabled,” the third mode has to be explained.
At the heart of these mechanisms resides an intrinsic normativity, a conceptual
basis that allows bio-power to pass through the individual and take hold in life
itself. Beyond a discursive construction external to the subject, subjectification is
above all the modification of subjects’ relationships with themselves. In this way,
individual docility can only be completely achieved by modifying people’s relation-
ships to themselves, their identities, and their own self-knowledge. Subjectification,
according to Foucault, therefore introduces a form of self-control based more on
ethics (individuals in relation to themselves) than on legality (individuals obeying
the law; McHoul & Grace, 1997).
Hopefully, for Foucault, where there is power, there is resistance. However,
resistance is not distinct from power but rather a fundamental component of it.
This implies the existence of tension, confrontation, and struggle (McHoul & Grace,
1997), both essential and inherent to its exercise. This “counterpower,” as Foucault
calls it (McHoul & Grace, 1997), seeks to resist the specific techniques of power that
transform individuals into subjects (Malette, 2006, p. 97). Consequently, Foucault’s
theory invites us to analyze the concept of intellectual disability in a way that goes
beyond a juridico-discursive view of such construction to look at practices and
power relations that contribute to subjection, oppression, and resistance.

Clinical Models
In this article, the term clinical models includes models traditionally used in medicine
and psychology to measure and diagnose intellectual disability. Among these, the
biomedical model, dominant in Western medicine (Larson, 1999; Veatch, 1973),
aims to distinguish the normal from the pathological by associating health with
the absence of illness or disability (Larson, 1999; Lundström, 2008). It proposes
the diagnosis, classification, and treatment of illness through medical interven-
tions (Lundström, 2008) and, in doing so, attributes an individual, intrinsic value
to biological defects (Schalock, 2011). The goal of this model is to offer cures or
treatments to correct these abnormalities. Although it recognizes the influence
of multiple interactions within the social environment (Schalock, 2011), such an
approach attributes key roles to heredity, organicity, and the pathologization of
intellectual disability (AAIDD, 2010) and implies the evaluation, categorization,
normalization, and correction of these differences. These models have many
consequences, the first of which concerns the concept of intelligence. Indeed, the
medical or psychological diagnosis of intellectual disability currently rests on the
measurement of intellectual function and adaptive abilities. This means transforming
these abstract concepts into verifiable, quantifiable units with supposedly objective
criteria (Gould, 1997) to be used in the construction of psychometric instruments. The
desire to reify intelligence can be traced to the work of Adolphe Quetelet (1835) on
what he called “the average man” and that of Alfred Binet, whose research greatly

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Intellectual Disability255

contributed to psychometrics (Loranger & Pépin, 2003). Quetelet’s theory helped

transform statistical averages into norms seen as both natural and ideal (Davis,
2010), whereas Binet’s work contributed to create a standardized measure of IQ.
According to Canguilhem (2011), this normative approach unjustly conflates the
average and the norm and contributes to a strictly subjective distinction between
the normal and the abnormal erroneously perceived as scientifically objective.
The second consequence, closely linked to this problem, is the perception of intel-
lectual disability as an illness and the resulting search for corrective methods or
treatments. Eugenic sterilization, institutional confinement, and, more recently,
prenatal screening and selective abortion are among the treatments previously and
currently proposed (Davis, 2010; Hubbard, 2010). The third and final consequence
is the consideration of the effects of this kind of approach on the care and services
provided to persons with intellectual disabilities. Indeed, the biomedical model may
simultaneously give way to biological determinism and contribute to the medicaliza-
tion and pathologization of difference. Such an approach may reduce intellectual
disability to individuals’ intrinsic processes or organic characteristics by creating
a triple association: normality–health–absence of illness. In doing so, this approach
provides a biomedical justification that assumes the inferiority of certain groups
based on innate conditions (Gould, 1997) and minimizes the importance of related
historical, structural, social, and environmental factors.

Social Model
The deinstitutionalization and gradual recognition of intellectually disabled persons’
fundamental rights have gone hand in hand with the emergence of new explanatory
models of disability (Shakespeare, 2010). The social model of disability counterbal-
ances the biomedical model by recognizing the importance of external factors that
contribute to its construction. This model was developed by academics familiar
with physical disability issues, and limits of its application to intellectual disability
have been questioned (Scullion, 2010). Shakespeare (2010) identifies three general
characteristics of this model: the distinction between impairment (belonging to the
individual) and disability (structural), the location of the nature of disability in society
rather than in individual characteristics, and the distinction between people who are
disabled and people who are not disabled. The social model of disability recognizes
the existence of processes through which impairment becomes disability and rejects
the idea that the precarious social conditions that affect people who are disabled
are related to their impairments (Bampi, Guilhem, & Alves, 2010). On the contrary,
in this model, precariousness is situated not only in disability itself but also in the
social conditions at the source of disability. The responsibility for disability is there-
fore placed on social policy and society at large rather than on the individual; this
allows recognition of the processes of exclusion that lead to disability (Bampi et al.,
2010). Critiques of this model focus on the binary conceptualization of impairment
and disability and the minimization of the multiple, complex interactions between
them (Tremain, 2005). The principal effect of this duality is to limit the impact of
impairment to its individual/biomedical function and that of disability to its social
function (Hughes & Paterson, 1997). For this reason, the concept of impairment must

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256 Pariseau-Legault and Holmes

also be considered a discursive production able to legitimate certain mechanisms of

governmentality (Tremain, 2005). For Shakespeare and Watson (2001), the impact of
impairment as difference is underestimated. In support of this argument, B. Hughes
and Paterson (1997) state that impairment assumes a highly experiential, social, and
identity-related function that must absolutely be taken into consideration. One can, for
example, argue that the identity function of impairment or disability can be inscribed
in a postmodern perspective receptive to a multiplicity of individual identities that
allows it to move beyond a disabled–nondisabled dualist conception (Shakespeare &
Watson, 2001). It may also be useful to deconstruct and relativize the association of
disability with oppression to avoid this discursive association (Shakespeare, 2010).
It is also important to note that placing biomedical and social models of disability
in opposition may have a polarizing effect, whereas jointly considering social and
medical conditions may provide a more inclusive view (Shakespeare & Watson, 2001).
Finally, it should be noted that this model coexists with other approaches, includ-
ing the normalization principle (Nirje, 1994) and social role valorization approach
developed by Wolfensberger (2011) on the same basis. This approach has also
been criticized, primarily because of the normalization process it implies and an
assumed dualism between the individual and society (Yates, Dyson, & Hiles, 2008).
From a theoretical point of view, this approach ignores the discursive construction
of intellectual disability (Yates et al., 2008) and contributes to the subjectification
process described by Foucault (1982, 1984) by imposing a normative ideal that, by
creating difference between the normal and abnormal, may contribute to the con-
tinued oppression of people “labeled as intellectually disabled” (Yates et al., 2008).

DISCUSSION: INTELLECTUAL DISABILITY AND

NURSING PRACTICE

By adopting a biopsychosocial approach (Doody & Doody, 2012; Dosen, 2007;

Pridding & Procter, 2008) often associated with a holistic view of care (Doody,
2012; Doody & Doody, 2012; Earle, 2001; Galvin & Timmins, 2010; Sweeney, 2010;
Taua, Hepworth, & Neville, 2012), the nursing profession has developed a regime
of practice informed by particular medical and socioscientific political agendas
(Burrell & Trip, 2011). These practices are invested with medical power and have
historically been rendered credible through its gaze (Sweeney & Mitchell, 2009).
Because it has embraced medicine’s discursive practices and been colonized and
instrumentalized by the medical establishment (Holmes, Roy, & Perron, 2008), the act
of nursing has become an extension of bio-power (Perron et al., 2005). Furthermore,
nursing practice involving persons with intellectual disabilities has experienced an
identity crisis (Galvin & Timmins, 2010; Perron et al., 2005) so significant that, in
some countries, its existence as a specialty has been called into question (Sweeney
& Mitchell, 2009).
The most common nursing role is that of monitoring, evaluating, diagnos-
ing, and treating behavioral and mental health problems (Dosen, 2007; Felstrom,
Mulryan, Reidy, Staines, & Hillery, 2005; F. Hughes, 2009; Kerr et al., 2003; Pridding

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Intellectual Disability257

& Procter, 2008; Pruijssers, van Meijel, & van Achterberg, 2011; Sari & Başbakkal,
2010; Taua & Farrow, 2009; Taua et al., 2012). These individualizing, disciplinary
functions are especially conspicuous in institutional spaces and cases of comorbid-
ity or disruptive behavior (Taua & Farrow, 2009; Taua et al., 2012). In this context,
nurses adopt a risk management approach that translates into the spatial organiza-
tion of their units and the use of hypostimulation techniques, isolation, or physi-
cal and chemical restraints (Taua & Farrow, 2009). Also notable is the process of
objectifying the patient by documenting behavior and symptoms to help establish
diagnosis (Taua & Farrow, 2009). Nurses also use nursing diagnosis, a colonized
form of scientific objectification and classification technique often based on “. . .
negativity, risk, disability and potential failure” (Sheerin, 2004, p. 171). The frequent
coexistence of intellectual disability and mental health problems means that par-
ticular importance is attributed to the observation and documentation required
for diagnosis, itself a complex, subjective process (Felstrom et al., 2005). Nursing
practice with persons with intellectual disabilities is an extension of psychiatry
(Taua & Farrow, 2009). However, the risk of “biological reductionism” (Dosen, 2007)
and of confusing certain behaviors with symptoms of mental illness by minimizing
the numerous external factors influencing the person’s condition remains present
(Felstrom et al., 2005). Nonetheless, these mechanisms make it possible to categorize
individuals and provide interventions for corrective treatment. The transposition
of psychiatric practice onto persons with intellectual disabilities can be seen in the
perceived importance of diagnosis and treatment and the incorporation of psychiatric
classificatory terminology (Taua & Farrow, 2009). This process contributes to the
creation of a discursive regime legitimating these practices and maintaining their
power (Burrell & Trip, 2011). In this way, medical discourse retains its authority and
continues to use various techniques that, in combination with the need to guarantee
the safety of the environment, seem to override the need to establish a therapeutic
relationship with the patient (Taua & Farrow, 2009) and adopt an individualized
approach (Burrell & Trip, 2011). This situation is the source of many problems. In
particular, nurses lack confidence and are somewhat reluctant (Pridding, Watkins,
& Happell, 2007) to work with this clientele; they also do not possess the necessary
knowledge and expertise (Cartlidge & Read, 2010; Davies & Duff, 2001) directly
related to this population. The integration of these patients into general services
and the use of multiple psychiatric diagnoses appear problematic and could give
way to discrimination and stigmatization (While & Clark, 2010).
The rationalization of services, ascribed to the discourses of effectiveness,
efficiency, and precariousness of government action, may also lead to extramural
institutionalization because of insufficient services adapted to the needs of this
population (Burrell & Trip, 2011). Another aspect of nursing consists of delivering
health education to this clientele. This normative vector invests the discourse of
prevention and health promotion in individuals with intellectual disabilities (Pridding
et al., 2007). As a result, nurses become educational agents who convey govern-
ment agendas, be they habits for healthy living (Taggart, Truesdale-Kennedy, &
McIlfatrick, 2011) or breast cancer screening (Davies & Duff, 2001; Taggart et al.,
2011). According to Kerr et al. (2003), nurses must also act as instruments for the

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258 Pariseau-Legault and Holmes

early detection of health problems and document these issues using statistical data
collection tools. The principal argument for this role is the need to provide equal
access to health care (Sheerin, 2012; While & Clark, 2010). From this perspective,
nurses assume clinico-administrative responsibilities as a result of the diminished
hegemony of medical power in the face of a multidisciplinary approach (Burrell &
Trip, 2011). Nurses become managers with numerous functions, including planning,
coordinating, managing, and developing health programs and services (F. Hughes,
2009; Pridding et al., 2007) as well as surveillance and screening for illness (Kerr
et al., 2003).
The creation of deinstitutionalized spaces has helped transform these practices,
and resulting legislation and public policy reaffirm the fundamental rights of these
people to equality and social integration. Although institutional boundaries have
faded, community life still seems informed by an institutional culture that may
lead to more subtle dividing practices such as discrimination, isolation, lack of
interaction, and social activities (While & Clark, 2010; Burrell & Trip, 2011), and a
perceived lack of decision-making abilities on the part of people “labeled as intel-
lectually disabled” (Vallenga, Grypdonck, Tan, Lendemeijer, & Boon, 2006). In fact,
leading clinical practices in community settings are now focused on biopolitical
considerations based on the principles of normalization or social role valorization
(Pridding et al., 2007). However, normalization techniques may further contribute
to the subjectification process of individual labeled as intellectually disabled and
thus constructed as deviant from the normative gaze, in need of protection and
intrinsically incapable of making personal health care decisions (Taggart et al., 2011).
Concerning this point, a critical area of intervention to be considered is advocacy,
or the assumption that nurses systematically defend their patient’s interests. Nurses
have to be aware that what is sometimes represented as the “best interest” is also
a permissive construction (Areschoug, 2005). Such discursive formation is perfectly
adapted to the biopolitical form of governmentality that prevails in deinstitutionalized
spaces. Consequently, this dimension may easily lead to medical paternalism and
contribute to the continued state of dependence of people “labeled as intellectually
disabled” (Pridding et al., 2007). This is indeed the result when, because a person is
presumed incapable of making reasonable decisions (Taggart et al., 2011), health
decisions are negotiated between the person’s support system and medical per-
sonnel (Earle, Tilley, & Walmsley, 2012). People “labeled as intellectually disabled”
are therefore excluded from making decisions that affect them (Koch, Marks, &
Tooke, 2001) because these decisions are construed as being in their best interest
(Areschoug, 2005). Furthermore, accessible and easily understandable information
(McConnel, Mayes, & Llewellyn, 2008), as well as standards for evaluating the abil-
ity to consent (Vallenga et al., 2006), are lacking.
Sheerin (2012) qualifies nursing practice as quasimedical and quasisocial. This
position both runs the risk of polarizing critiques aimed at these two models and
presents the possibility of learning from their interaction. Described in this way,
nursing may remain confined within the anatomico- and biopolitical dimensions
of bio-power and contribute to the subjugation of the populations cared for as well
as those who care for them. Resistance is nonetheless possible and recognizing

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Intellectual Disability259

the segregation and marginalization from which these people suffer provides an
opportunity to incorporate an emancipatory dimension into the provision of care.
It is evident that nursing practice must above all remain focused on the return to
or the maintenance of life within the community (Taua et al., 2012). However, cur-
rent discourses of precariousness and the rationalization of services may lead to
the reinstitutionalization of persons “labeled as intellectually disabled” if programs
meant to help them are no longer able to meet their needs (Burrell & Trip, 2011). In
the interests of social justice, nursing practice must therefore become a vector of
self-determination and increased access to the health care system (Sheerin, 2012).
From a transversal perspective, a nurse’s skills must go beyond medical expertise
and find their footing in the relational dimension of practice (Pridding et al., 2007).
A nurse’s communications and interpersonal skills must permit the establishment of
relationships built on trust (Bakken, Eilertsen, Smeby, & Martinsen, 2008; Vallenga
et al., 2006). An approach to care that is personalized and adapts to people’s specific
needs may avoid reducing them to the apparent manifestations of their diagnosis or
putting emphasis on differences that some would normalize. Nursing practice must
do more than treat; it must, above all, guide patients through the various programs
and services they use. This partnership must support self-advocacy (Pridding et al.,
2007) and encourage people “labeled as intellectually disabled” to make their own
decisions and participate in organizing and developing their treatment (Burrell &
Trip, 2011; Heller, Miller, & Factor, 1998). Self-advocacy implies a nursing role that
facilitates the development of self-determination skills (Pridding et al., 2007). In doing
so, the person’s autonomy, self-confidence, feelings of competence, and personal
skills, including the ability to solve problems, will be developed and recognized.
Thus described, nursing practice becomes a “health facilitator” (Jukes, 2002) play-
ing an advisory role designed to guide these individuals and their families through
various health experiences and offering more equal and equitable access to the
health care services their conditions require (Sheerin, 2012). To ensure consistent
care, such a role must also understand the connections among the different support
systems involved (Koch et al., 2001). This requires nurses to be equally familiar with
the medical and community services that may contribute to the person’s autonomy
and continued participation in the community.
This also means adopting an approach to habilitation and rehabilitation that
respects people’s comprehension skills and personal characteristics, particularly
their culture (Doody & Doody, 2012). For a person to consent to the care and services
suggested, the information provided must be adapted; first and foremost, it must be
presented in clear language. This can be a complex task, given that a certain degree
of autonomy is required to access the health care system for reasons related to a
person’s condition, to provide the details necessary to understand the situation,
and to understand the information provided to follow medical recommendations
(Kerr et al., 2003). The lack of plain-language information and communication aids
(McConnel et al., 2008; Taggart et al., 2011) contributes both to the continued exclu-
sion of these individuals and their dependence on caregivers (Vallenga et al., 2006)
in matters related to proposed health care services. In supervised environments,
similar principles can be applied: In addition to advocating for the creation of a

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260 Pariseau-Legault and Holmes

stimulating environment with activities adapted to individual needs, nurses must

also encourage participation in decisions made within the community (Heller et al.,
1998). In family contexts, aging of individuals “labeled as intellectually disabled”
and of those who act as caregivers, who are often their primary support systems,
must be taken into consideration (Bigby, 2008).
It is clear that nurses must develop and assume leadership in these matters (Burrell
& Trip, 2011). In addition to influencing the political representation of persons with
intellectual disabilities, they must also make use of their power to influence public
policy and health programs and services that are poorly adapted to the needs of
this population and contribute to maintaining their disability (Burrell & Trip, 2011;
Scullion, 2010). Nurses must distance themselves from risk management techniques
to be able to focus on “. . . possibility rather than disability” (Sheerin, 2004, p. 171).
By recognizing the advances made by the social model of disability and social role
valorization, nurses must finally maintain a critical perspective both on the limits
of normalization and on its potentially discriminatory and stigmatizing effects.

CONCLUSION

If nursing practice remains limited to its biomedical dimension, it may contribute

to maintaining the structural discrimination that still affects persons “labeled as
intellectually disabled” (Scullion, 2010; While & Clark, 2010). Although the social
model of disability enjoys a certain popularity, its application to intellectual disability
has limits. The binary relationship between biomedical and social models contrib-
utes to the polarization of practices, and these tensions also seem to reinforce the
apparent division between available services and clinical practice (Scullion, 2010).
Despite the fact that these services are increasingly concerned with integrating
persons “labeled as intellectually disabled” within the community, practice often
remains limited to an institutional perspective (Burrell & Trip, 2011). As a result,
these individuals become users of general health services whose specific needs
must be adequately addressed. The absence of a standard regarding consent may
lead to medical paternalism and the conception of persons with intellectual dis-
abilities as incapable of making their own decisions (Vallenga et al., 2006). Too
often, these people are excluded from medical decisions that concern them (Earle
et al., 2012) or kept in a state of dependence on those who provide care (Vallenga
et al., 2006). It is essential that professionals take the necessary steps to encourage
their participation in these decisions.
Following this logic, the principle of advocacy must be reconstructed to become
synonymous with resistance. This perspective implies actively defending the person’s
rights and resisting biomedical paternalism, (re)orienting practice toward self-advocacy
to allow individuals to develop and exercise their right to self-determination, and
adopting a broader vision focused on changing public policy and services provided
to this population (Scullion, 2010). Rather than limiting itself to the nurse–patient
relationship, this last perspective must be expanded to incorporate the entire range
of support services at play, including family.

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Intellectual Disability261

Although some researchers argue for a shift from the medical model to a more
holistic one, it seems that nurses may be not ready for such a challenge (Sheerin,
2004). These reflections are an invitation to rethink how nurses are trained and
how services are provided to mount an effective fight against the stigmatization
and discrimination affecting persons with intellectual disabilities (While & Clark,
2010). To do so, nursing practice must make a sincere commitment to abandon-
ing its normalizing framework and resisting instrumentalization by particular
anatomico- and biopolitical practices. If nursing practice does not emancipate itself
from the biomedical colonialism with which it is imbued, it may instead contribute
to continued health inequalities affecting these individuals.

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Correspondence regarding this article should be directed to Pierre Pariseau-Legault, RN,

PhD(c), School of Nursing, Faculty of Health Sciences, University of Ottawa, 451 Smyth Road,
Ottawa, ON, K1H 8M5, Canada. E-mail: ppari081@uottawa.ca

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