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3.0 Historical Review of Intellectual
Disability 3.1
Background
“By its very presence, the exceptional body seems to compel explanation, inspire representation, and incite regulation.” (Thomson
1996:1) This
chapter provides a discussion of the history of how people with intellectual
disabilities have been understood, labelled, cared for, and, at times,
mistreated. It is important to understand this history of disability and care
because it is in that history that contemporary attitudes and means of caring
for these people have their origins. There are four goals for this chapter. The
first goal is to use the literature to show the historically poor treatment of
people with intellectual disabilities in state care, and the social rejection
and stigma they have been subject to since roughly the 1840s. The second goal
is to discuss the many ways in which this stigma has been culturally
constructed through false conceptions of intellectual disabilities despite
changed understandings among professionals in the caregiving field. Third, I
show that the conditions, needs and characters of people who are labelled
intellectually or developmentally disabled vary significantly, and I discuss
the concomitant importance of offering a variety of forms of care and
residential options. Independent living has not, in fact, produced greater well
being for all people with
intellectual disabilities. The final goal is to show that the failure to
properly support and retrain front-line caregivers in the new care ideologies
has produced unnecessary strain and role confusion for them that ultimately
affects the quality of care that they can provide. I begin with a discussion of current definitions of intellectual and
developmental disability and the history behind the many changes to the label.
I then expand on the complex history of the emergence of intellectual
disability as a category and a “problem” that is both biologically based and
culturally constructed. Finally, I review the colourful history of changing
attitudes towards people with developmental disabilities, and the various
mechanisms of caring for and housing them that have emerged from the early
1800’s onwards. For historical accuracy, and to evoke the moral dynamics
surrounding disability, I use period-appropriate language throughout this
chapter. 3.2 Current
definitions of developmental disability
L'Arche communities were formed to
serve and to create homes for people with intellectual and developmental
disabilities. The term “disability” has changed in meaning and scope many times
since the mid-1800’s, and even since the 1960s when L'Arche was formed. The
disability and mental health fields have generated a proliferation of terms in
the last 150 years. These terms also vary in usage between Canada, the US,
Europe, and elsewhere. For example, in the UK, the term “learning disability”
is roughly equivalent to the term “mental retardation”, as it is used in the USA, and to “intellectual
disability”, as this term is used in Canada. In Canada and the USA, “learning
disability” refers to yet another area, including dyslexia or other
difficulties which can often be corrected. I
restrict this discussion to the Canadian and American terminological
developments, which have been mutually-informing. While the meanings of the
terms continue to change, this discussion provides an overview of the key
elements and issues. 3.2.1 Reasons
behind the proliferation of terms and definitions
It
is important to address briefly why there have been so many labels for, and
definitions of this group of people. The dual, and at times contradictory,
goals of the definitions were to help create higher quality and lower cost ways
to handle, and care for, people considered developmentally disabled, or in some
way unable to accomplish self-care. Smith notes that since the mid-1900’s,
changes to the definition have been conceived out of the tension between two
somewhat incongruous goals of scientific accuracy and of greater sensitivity
towards people labelled as mentally retarded (Smith
1997:11-12). Definitions also proliferated because different
groups created typologies for different purposes. A listing of terms used by
different professions illustrates this point. In the mid-1800’s, doctors
created medical terms or “grades” to try to separate out priorities for
distribution of care in their increasingly crowded asylums: fools (mild
retardation), moron (high-grade mental defectives), imbecile (moderately severe
retardation), or idiot (severe retardation) (Simmons
1982; see also Trent Jr. 1994:159-73; Smith 1997:4). Early in the 1900’s, psychologists used IQ test
performance to grade people for treatment eligibility and financial support,
with the levels of mild, moderate, severe, profound, and un-testable mental
retardation (See Appendix 3.2) (Smith
1997:4; APA Task Force 2000). In the 1950s, educators developed levels that
indicated the declining expectations of development among their charges:
educable mentally retarded (could read eventually but learn very slowly),
trainable (no reading but does basic tasks), sub-trainable, and custodial (Smith 1997:4). In his historical account of
changing attitudes to “severely retarded people,” Ferguson argues forcefully
that, while these classifications have led to better supports for people with
the least impairment (i.e. mildly retarded and educable), they have, in fact,
worsened the life conditions of, and negative attitudes towards, people in the
middle-to-low end of impairment because the
grades impose a sense of chronic failure, hopelessness, and uselessness onto
them (1994:3-4). Further, his research suggests that this so-called failure to be rehabilitated is
consistently blamed on the impaired individual rather than acknowledging the
roles of professional inadequacy (Simmons
1982; Ferguson 1994:43, 161; Trent Jr. 1994). Problems
with labels and grading systems notwithstanding, some form of definitions and
classification is necessary given the state medical, economic, and educational
intervention that is required and, indeed, demanded by people with
disabilities, their families, advocates, and society. Definitions of disability
have a role in shaping what is considered to be appropriate support, for whom,
and how that support should be delivered to people with disabilities. This
relationship becomes apparent when disability is redefined, along with
eligibility for funding (Smith
1997:3). For example, in the USA, in 1975, changed
definitions dramatically reduced the number of students classified with mental
retardation in schools by reclassifying people with “mild” retardation as
having a “learning disability” which, while less stigmatizing, also reduced the
amount and length of their state financial support (ibid:3). The definitions interact with and
shape public attitudes towards people classified with an intellectual
disability. Many activists have argued for a change in public perception and
language to recognize that a disability is not necessarily a global or dominant
feature of someone’s identity (Simpson
1998:6). Advocates argue for language that better reflects
that they are “people first” rather than disabled first (Roeher Institute 1996:19-24; Epp 2000a; WSDSHS 2002). In Canada, the Roeher Institute and the Canadian
Association for Community Living (CACL) have been leaders in promoting the use
of such language that is less “disabling” (CACL
1997).[i]
For example, their publications follow the system of International
Classification of Impairments, Disabilities, and Handicaps (ICIDH), developed
in the 1970s by the World Health Organization to classify the consequences of
diseases, disorders, and injuries, and to distinguish between impairment,
disability, and handicap (Roeher
Institute 1996:20). Impairment
refers to the loss of normal
function (psychological, physiological, or anatomical structure), while a disability refers to the restriction of normal ability that
arises from the impairment, and a handicap
is the disadvantage a person
experiences because of the impairment and disability (Roeher Institute 1996:20-1). To illustrate, Dr. Gregor Wolbring, who is a
biochemistry professor at the University of Calgary, explains that as a
thalidomide baby he was born with an impairment,
no legs, but that this is only a disabling
condition because the world is designed for people with legs, and because society stigmatizes those without legs (Hingsburger 2001b:5). Still, he is not convinced that not having legs has
been a handicap for him, as he jokes
in an interview: Having legs, what would I gain besides that
society would view me in a more positive way, which I think is disgusting to
start with? If I get viewed by society based on my legs, I wouldn’t trust their
judgement… I only get to know people who are nice, because the ones who are
normally not very nice can’t get around that I have no legs… can’t view me as
an equal. So I actually have an evolutionary advantage here. (Ibid:5) Other organizations use different
terms, however. For example, the American Association for Mental Retardation
(AAMR) states: “A disability refers to personal limitations that represent a
substantial disadvantage when attempting to function in society” (AAMR 2002b). I elaborate on the issues regarding different
definitional emphases in section 3.3.5. First, however, I present key
definitions of intellectual disability. 3.2.2
Definitions of Intellectual Disability
Hauerwas
cautions that the “realization that retardation is [also] a social designation
should not blind us to the fact that the retarded do have some quite
specifiable problems peculiar to them and that their difference requires special
forms of care.” (Hauerwas 1986:161). The most recent definition of mental retardation
used in the USA is found in the AAMR’s widely used manual on mental retardation
published this year (Luckasson,
Borthwick-Duffy et al. 2002). The AAMR has updated this definition ten times since 1908 and is in the
process of changing its name to American Association of Intellectual Disability
(AAMR 2002). Thus, the
definition below describes intellectual disability, as well (also see Appendix
3.1). The previous AAMR definition (1992) was adopted in the Diagnostic and
Statistical Manual, 4th edition, (DSM-IV) with the additional
specification of an IQ test score from 0 to 70 (APA Task Force 2000). AAMR Definition
of Mental Retardation (Intellectual Disability) (AAMR
2002b) Mental retardation is a disability
characterized by significant limitations both in intellectual functioning and
in adaptive behaviour as expressed in conceptual, social, and practical
adaptive skills. This disability originates before age 18. 5 Assumptions Essential to the Application of the Definition 1. Limitations in present
functioning must be considered within the context of community environments
typical of the individual's age peers and culture. 2. Valid assessment
considers cultural and linguistic diversity as well as differences in
communication, sensory, motor, and behavioral factors. 3. Within an individual,
limitations often coexist with strengths. 4. An important purpose of
describing limitations is to develop a profile of needed supports. 5.
With
appropriate personalized supports over a sustained period, the life functioning
of the person with mental retardation generally will improve. The Ontario Association for
Developmental Disabilities (OADD) is a large professional and advocacy
organization, which publishes a comprehensive resource manual that includes an
entire chapter on definitional nuances in Ontario and Canada (Brown and Percy 2002). Brown explains that Canadian definitions follow
American ones but are applied more flexibly (relying more on clinical
judgement) and tend to be purpose-specific definitions rather than universal
ones (Brown 2002a)[ii]. While
government ministries and Acts use various definitions and terms, as of 2001,
the term developmental disability is officially “now used throughout Ontario
statutes” and is defined, in the Developmental Services Act, as “a condition of
mental impairment present or occurring during a person’s formative years, that
is associated with limitations in adaptive behaviour” (Brown 2002a). The term
came into common use in Ontario in the 1970s replacing the terms developmental
handicap and mental retardation. It is
now used synonymously with intellectual disability, which is more precise
(Brown 2002a). Although the term developmental disabilities technically includes people with
conditions like autism that do not necessarily result in cognitive delays, its
current social meaning in Ontario is
“those people with lower intellectual functioning who need some type of
specialized assistance to carry out the practical and social activities of
daily living” (Brown 2002a). The CACL is committed to using
plain language in all materials they produce. Therefore, their definition of
intellectual disability is
straightforward and conveys a similar meaning as the definition used by the
OADD. The CACL definition states that an “intellectual disability is an
impaired ability to learn. It sometimes causes difficulty in coping with the
demands of daily life. It is a condition which is usually present from birth,
and it is not the same as mental or psychiatric illness” (CACL 1997; CACL 2001). The definition used by the Roeher Institute suggests
that people “with an intellectual disability have a cognitive or perceptual
impairment that means they master basic and social skills more slowly” (Roeher Institute 1996:13-14). 3.2.3 Defining
Developmental Disability
Intellectual disability, or mental
retardation, is most accurately considered a sub-set of developmental
disability, although in many cases, all three terms are used interchangeably[iii].
Although each state in the USA has its own legal definition of developmental
disability, there is a federal definition that is widely applied, although with
some variations[iv]. To be specific, the category of developmental disability is commonly
said to include people with: mental retardation “and several conditions that
can (but do not always) produce similar results: cerebral palsy, epilepsy, and
autism” (WSDSHS 2002), as well as other neurological disorders, and
“conditions requiring services similar to those required for persons with
mental retardation” (CSCDD 2002). The reason that some developmental disabilities are
separated from intellectual disability, per se, is that “[some] people with
autism or cerebral palsy, for instance, may have normal to high IQs, but have
great difficulty expressing themselves or communicating with others, and may
also have physical disabilities so severe that they require 24-hour support” (WSDSHS 2002). Films such as Rainman and My Left Foot
portray people such as this, whereas films such
as I Am Sam and What’s Eating Gilbert Grape? portray people who
have clear intellectual impairments. L’Arche primarily invites people with
intellectual disabilities but also some people with significant developmental
disabilities. USA Federal definition of Developmental Disability (ARC 2001; ACDD 2002; CSCDD 2002) A. The term developmental
disability means a severe, chronic disability in an individual five
years of age or older that: 1.
Is attributable to a mental or physical impairment or a combination of mental and physical impairments
2.
Is manifested before the person attains age 22 3.
Is likely to continue indefinitely 4.
Results in substantial functional limitations in three or
more of the following areas of major life activity: self-care, receptive and
expressive language, learning, mobility, self-direction, capacity for
independent living, or economic self-sufficiency. 5.
Reflects the individual's need for a combination and
sequence of special, interdisciplinary, or generic services, individualized
supports, or other forms of assistance that are of lifelong or extended
duration and are indivdually planned and coordinated. B. Infants
and young children: An individual from birth to age 9, inclusive, who
has a substantial developmental delay
or specific congenital or acquired condition, may be considered to have a
developmental disability without meeting 3 or more of the criteria described in
1-5 above if the individual, without services and supports, has a high
probability of meeting those criteria later in life. While
the definitions of developmental and intellectual disability are still
evolving, key features of these conditions are that once developed they:
require some degree of ongoing, life-long supports; can be congenital or
acquired; have no
total cure but are often ameliorated through early intervention,[v]
medication (see Section 3.3.5), and ongoing supports (ARC 2001; AAMR 2002; WSDSHS 2002). There is some disagreement in the field over whether developmental
disability and/or mental retardation/intellectual disability are medical conditions, disorders or neither of these. Several organizations, including the
AAMR, now use definitions that specify “mental retardation is not a medical
disorder, nor a mental disorder” (AAMR
2002; Luckasson, Borthwick-Duffy et al. 2002; WSDSHS 2002). The authors of the DSM-IV, however, state the
opposite, although they concede that in many cases “physical causes have not
been demonstrated or are poorly understood, even though biological treatments
(e.g. drugs) may be effective in treating them” (see Appendix 3.2) (APA Task Force 2000). Significant
variations in definitions used to identify developmental disability make it
difficult to compare figures from different sources. Still, a few statistics
will help illustrate the numbers of people who have been categorized as
developmentally disabled. Using data for 2001, Gollay and Associates estimate
that 1.8% of the American population, or 4.86 million individuals, are
developmentally disabled (CSCDD
2002).[vi]
This is significantly lower, however, than the ARC’s estimate of a 2.5-3%
prevalence rate and 6.2-7.5 million Americans with mental retardation (ARC 2001), especially considering that mental retardation is
only a sub-set of developmental disabilities.[vii]
In Canada, the CACL estimates that 899,000 Canadians (roughly 3%) have an
intellectual disability (CACL 2001).[viii]
Of these people, estimates suggest that 80-87% “will [only] be mildly affected”
meaning they will learn slowly but will likely be able to live independently,
with minimal supports, eventually (ARC
2001; WSDSHS 2002). Of the remaining 13-20%, approximately 90% are
classed as moderately retarded, and 10% (i.e. 1.3-2% of all people with
intellectual disabilities) as severely or profoundly retarded (WSDSHS 2002). 3.2.4 Key changes in
definitions: 1941-2002
In the previous section on
definitions, I outlined the key changes in the AAMR definition since 1941, and the
significance of those changes. In this section, I describe the evolution of the
definition between 1941 and 2002. I elaborate on the reasons for the changes later in section 3.3. Although social or adaptive
incompetence had been discussed since 1941, it was not officially included in
the AAMR (then AAMD) definition of mental retardation until 1959. Following
that definition, “mental retardation refers to subaverage general intellectual
functioning which originates during the developmental
period [birth to 16 years] and is associated with impairment in adaptive
behavior” (Heber 1959; Smith
1997:5-7). Criticized for lacking specificity, this definition
was revised in 1961 to stipulate that “subaverage” meant an IQ score one
standard deviation below the mean, or IQ scores of 85 or less[ix].
Using this criterion, a full 16% of the population of the United States, in
1959, would have been categorized as mentally retarded (Heber 1961; Smith 1997:6). This definition was problematic (see section 3.3) as
too many people who did not require care, particularly immigrants whose first
language was not English, were committed to state institutions leading to
overcrowded facilities (Trent Jr.
1994:260, 168). The care provided in these under-funded institutions
slid until the poor conditions were publicly revealed during the 1960s (Trent Jr. 1994:251-2). Major revisions were made to the
American definition of mental retardation in 1973: 1) The IQ ceiling was changed to 2
standard deviations below mean, so that a score of 70 or lower was required in order to qualify for state
support. This left just 2.25% of the population in this category. (Trent Jr. 1994:261; Smith 1997:6). 2) Adaptive behaviour became a
more important part of the diagnosis, (Smith
1997:6). 3) The developmental period was
raised to 18 years. (Smith 1997:6). These changes substantially
reduced the number of people qualifying for support, although later changes
added some flexibility with IQ cut-offs (Smith
1997:7). Reclassifying people as merely “learning disabled,”
was accompanied by a significant increase in funding for special education in
normal schools from 1976-85, and no children were thereafter admitted to the
institutions (Trent Jr. 1994:261). The numbers were influenced not just by IQ and
funding changes, but by changing attitudes and programs. Parents and
professionals were more hesitant about labelling a child due to the stigma, and
early childhood intervention programs also improved (Smith 1997:7). Changes to the definition in 1983 extended the
developmental period from birth to conception so prenatal causes of retardation
became eligible for funding and care under this redefinition (ibid:7). The
authors of the 1992 AAMR definition changes hailed it as a paradigm shift
towards a functional and social perspective. This definition shifts the locus
of the problem from the individual to the interaction of individuals and their
environment, and moves the emphasis away from people’s deficits to their needs (Schalock, Coulter et al. 1994; Smith
1997:8-11). One major way this was accomplished was by changing
from sub-classification into grades by IQ, (See Appendix 3.2), to
sub-classification by the intensity of
supports that someone requires as intermittent, limited, extensive, or
pervasive (Luckasson, Coulter et
al. 1992). The 1992 definition includes a set of four
assumptions[x] that guide
the definition and recommended supports, name the importance of environmental
and cultural factors, and emphasize the ameliorative potential of appropriate,
individualized interventions. While this change was criticized for not being
rooted in new medical or scientific research, and for simply replacing one
classification system with another[xi]
(Smith 1997:9-11), it has taken hold and was adopted by the DSM IV (APA Task Force 1994). Changes included in the recent 2002 definition are
minor and improve the sensitivity of the language[xii]
(See appendix 3.1). Section 3.2 laid out the current
definitions and issues of the field of intellectual disability, with a brief
discussion of rationales behind the changes. In the next section 3.3, I
elaborate on the socio-cultural, political, and economic dynamics that
contributed to these various definitional and policy changes and to the
volatility of public attitudes towards people who have developmental
disabilities. 3.3 A
critical history of the concept of intellectual disability
“Mental retardation is a construction whose changing meaning is shaped
both by individuals who initiate and administer policies, programs and
practices, and by the social context to which these individuals are
responding.” (Trent
Jr. 1994:2) In
this section I synthesize the results from a number of historical analyses to
show that the concept of intellectual disability and the social meanings
associated with it over time are cultural constructions, as much as biological
facts. While I can hardly do justice to the many excellent histories of the
field, I provide enough discussion to demonstrate two main points. First, that
the changing fortunes of people with intellectual disabilities in Canada and
the USA have hinged more on political, moral, and economic factors and
professionals’ agendas than they have on changes in disabled people’s
conditions or their responsiveness to education, treatment and rehabilitation (Ferguson 1994; Trent Jr. 1994; Roeher
Institute 1996). Second, I show that, although in retrospect the
attitudes towards and management of people with intellectual disabilities seem
scandalous, the policy makers generally thought that their actions were morally
acceptable given the norms of their time. These views were widely held in their
contemporaneous professional organizations (Simmons
1982; Trent Jr. 1994). In order to make these two
arguments, I address historical shifts in the professional and popular
understanding of intellectual disabilities and the accompanying moral and
attitudinal changes. I demonstrate how, until recently, people with
intellectual disabilities have been construed as the problem; thus they are the
ones who had either to be educated, segregated, rehabilitated, cured, or at
least be made to become more “normal” and productive. Mental defectives of
various sorts were seen as a problem requiring a social and regulatory response
(Barham 1992:78; Ferguson 1994:7). I close with a discussion of the range of current
conceptual approaches that are being used in the field and a discussion of
currently known causes. 3.3.1 Competition for
control of the definition
Foucault has shown us how modern
power effectively operates through knowledge, not force; the dominant group
seeks to control the definitions of what is considered normal and moral by
naturalizing its own values (Foucault
1965:78-82, 195, 69; Foucault 1973; Castel 1991; Fox 1994:22-3). Early on, since the origins and nature of being a
so-called mental defective were not understood, there was open competition for
ownership of knowledge about the condition between God (sins/grace), nature
(hereditary), teachers, administrators, doctors, psychiatrists (Langness and Levine 1986:ix; Thomson
1996:4) and, lately,
social workers and rehabilitation specialists. The condition has been named by
professionals at different times as “a disorder of the senses, a moral flaw, a
medical disease, a mental deficiency, a menace to the social fabric” and mental
retardation. The public’s associated affective and moral responses have
included pity, compassion, fear, contempt and a desire to control (Trent Jr. 1994:2). Foucault also demonstrated that social categories are often created as a counterpoint to particular cultural conditions (Foucault 1965:250-2). For example, changes in the contingent social needs of the past have led to mentally sub-normal people being spiritualized, fetishized or demonized (Ferguson 1994:5-7; Krishef 1983:17-34; Ingstad and Whyte 1995; Roeher Institute 1996; Thomson 1996). Christian attitudes to them have also varied; from charitable caring for these “children of God” to judging them as lacking moral piety and condemning them as soulless (Wolfensberger 1975:7; Krishef 1983:18-19). Systematic attention to people considered mentally subnormal began in earnest in the early 1800’s (Simmons 1982:8; Ferguson 1994:28-9). The rise in concern occurred because of economic and demographic changes towards industrialization and urbanization which loosened or eliminated the protective webs of local community ties and familial distribution of labour. This left masses of people homeless, poor, and thus problematic for municipal leaders (Radford 1994; Trent Jr. 1994:12; Roeher Institute 1996:1-3) |