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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). It
was not until the mid-1800s that what we now know as intellectual disability
began to be somewhat differentiated medically and socially from other so-called
deviant conditions including: poverty, laziness, criminality, mental illness,
or physical disability (Goffman
1963; Wolfensberger 1975:3-5; Simmons 1982:2-18; Murphy 1990:112). In the 1840 US census, the term “idiots” was first
used officially to refer to this group (Trent
Jr. 1994:38). Nevertheless, by that time, a naturalized sense of
connection between cognitive abnormalities and poverty, moral weakness, and
violence had been forged in the public consciousness (Barham 1992:151; Ferguson 1994:5-45). Stigma and scorn were directed towards this diverse
group by the general public as much because they were not economically
productive or morally astute as it was a result of their cognitive impairments
per se (Wolfensberger 1975; Hauerwas
1986:161; Murphy 1990:81-87; Barham 1992:78, 116; Trent Jr. 1994). The values evident in these negative attitudes
eventually contributed to the design of solutions for housing and the
rehabilitation of people with intellectual disabilities (Wolfensberger 1975:2). Foucault
shows that clinics and asylums for the mentally ill, who shared a similar
historical trajectory, were originally intended as temporary care facilities
that would catalyze scientific progress by facilitating patient observation in
a neutral, lab-like setting (Foucault
1973:108-12). This scientific ideal was, however, also used as a
rationale for poor treatment of the patients, resulting in subsequent
iatrogenic effects (Foucault
1973:108-112; Freund 1982b:11). Barham calls the treatment of “lunatics” a
“politically sanctioned operation of disposing of the socially unwanted and
unproductive” (1992:140). The “paradox of the asylum” is that the public will
to isolate sick or deviant people includes both “wanting to help them and
wanting to get rid of them” (Barham
1992:9,68) because they lacked socially-valued traits (Foucault 1965:vi; Fine and Asch 1988:16). Differentiating
and labelling people who are already socially marginal often initiates a “cycle
of devaluation and degradation” (Brown 2002a). Ferguson argues that labelling
is also worse for those who end up on the least-valued end of definitional
scales (1994:2-25). Researchers show that once early asylum administrators
began to differentiate between their “curable wards”, lunatics (mentally ill or
simple) and the so-called “incurables” (idiots, imbeciles, mentally retarded),
they refused admittance to the latter in order to optimize their rehabilitative
“success rates” (Simmons 1982:3-10,
21; Ferguson 1994:6). Eventually, under public and political pressure to
provide room for imbeciles, Canadian doctors opened up “second tier” residences
for them in 1857 and 1861 (Simmons
1982:9-11). From their inception, these residences were notably
more custodial than rehabilitative in intent (ibid:9-11). Another distinction was made
between the deserving and undeserving poor; the deserving, including mental
defectives, were judged as unable to help themselves (Ferguson 1994:41, 7-25). While being defined as deserving meant access to
charity, it also coloured recipients’ identities and future with failure and
hopelessness (ibid:2-25, 31). Ferguson asserts that this ipso facto
condemnation to failure provides disability professionals with a convenient
excuse for the inadequacies of their approaches (1994:43). He wryly
characterizes the professionals’ foolproof, if tacit, dictum: “Those
[defectives] who failed did so because they were unteachable, not because they
had not been taught” (Ibid:161). “Failure was held to be a natural limitation
of individuals, not a social inequity of incremental reform” (Ibid.:158). This
un-stated justification for the lack of improvement also set a poor tone for
the quality of care or teaching expected of front-line workers (Ryan and Thomas 1980:14; Thomson 1996:4). 3.3.2
Dominant approaches in different historical periods
Certain
professions and their approaches dominated the field of mental retardation at
any given time, although there always was, and is, some overlap. Cultural
factors also played a part in which perspectives flourished. These perspectives
mediate the manner in which non-intellectually disabled people experience and
relate to people with intellectual disabilities. The
Romantic period in Europe (early 1800s) produced a charitable, liberal optimism
for the educability and correction of people with various deficits including
the “sensory disorders” of the blind, deaf and dumb (Trent Jr. 1994:11-13). Various success stories of the education and
rehabilitation of “idiots” in France during the 1820s-30s caught the
imagination of North Americans around 1842, while they also grappled with what
to do with mentally defective people. (Trent
Jr. 1994:12-17). Thus began a period from the 1840s to early 1850s
when educators dominated the decisions about mental defectives. This time was a
“golden age” for disability care because optimistic predictions for
rehabilitation made by school directors generated political interest and funding
for buildings and innovative programmes (Radford
1994:13; Trent Jr. 1994:40-60). While some programmes and schools in the US achieved
a degree of success in rehabilitation, in the form of returning people to the
community as productive citizens, little success was achieved overall (Trent Jr. 1994:29). The lack of progress was partly
due to overly optimistic expectations, intentionally exaggerated by directors
who were lobbying for funding. There was also a lack of funds and this meant
that most state schools were too big, overly crowded, and lacking in enough
well-trained educators to execute the pedagogical programmes properly (Wolfensberger 1975; Simmons 1982; Tylor
and Bell 1984; Fox 1994:13; Trent Jr. 1994:15, 57; Roeher Institute 1996). The early state schools were, in some ways, victims
of their own optimism and propaganda because their aggressive claims made their
actual modest successes seem like failures (Trent
Jr. 1994:94). Public awareness of these failures exacerbated
existing negative stereotypes such that when a few progressive directors in the
1850s and 60s tried to help “simple idiots” reintegrate and gain employment,
local communities no longer wished to accept responsibility for them (Trent Jr. 1994:39, 94-5). Eventually, in the 1870s-80s,
faced with under-funding, overcrowding, and lack of paid staff, directors began
to train the “simple idiots” for use as labourers in sustaining the asylums and
caring for others. Essentially, this initiated the transition from school to
asylum, or education to a custodial model (Wolfensberger
1975; Ryan and Thomas 1980; Radford 1994:14-17; Trent Jr. 1994:94-5; Roeher
Institute 1996:3, 6). Later inquiries revealed that “inmates” often did
more work than the paid staff and that many had higher IQs than the staff (Simmons 1982; Ferguson 1994; Trent Jr.
1994:226-30, 253). This lack of progress by educators
created a gap for a new group to stake its claims. Although medical doctors had
been involved in the field since the 1840s, it was in the 1860s that they began
to replace educators as directors of schools and asylums for the mentally
retarded (Trent Jr. 1994:17, 36, 39). Nevertheless, like their predecessors, doctors made
rehabilitative claims in public, while inside the institutions they were
planning for life-time custody (Ibid:29). By 1889, one prominent US asylum
director admitted that just 10-15% of people in that asylum could be trained to
be self-supporting on the outside (Ibid:82). Even earlier, in 1863, a senior
Ontario inspector of asylums for idiots wrote, “All the treatment they [the
idiotic] require is simply for such occasional bodily ailments … their mental
faculties obscured from their birth are beyond medical skill, and generally
stolid, they require no other attention than a regard for cleanliness demand.
They may, consequently, be as well cooped up in a jail if it is so desired as
anywhere else” (Simmons 1982:12). The main thrust, in Ontario from the 1860s onward,
was clearly custodial, not rehabilitative (ibid.:6-14). Since there were no
medical cures for mental retardation, the shift in administrative power towards
the medical profession effectively created a permanently sick and incurable
patient (Wolfensberger 1975; Murphy
1990:131-33; Radford 1994:12-17). While
schools and asylums had been cast as means to protect and care for vulnerable
people, by the 1880’s the public mood shifted to protecting themselves from the
“menace of the feeble-minded.” The alleged moral weakness of the
“feeble-minded” was thought to lead to sexual and criminal deviance (Wolfensberger 1975:27-52; Trent Jr.
1994:84-8). This shift was largely predicated on the strategic,
political lobbying and even fear-mongering by asylum directors and doctors.
They sought to generate public support for greater funding of their
institutions by publicizing the supposed risk to the public of contagious moral
corruption (Shakespeare 1994; Trent
Jr. 1994:131-83; Bogdan 1996). One example from a medical research conference in
1907 reads: “While there are many anti-social forces, I believe none demands
more earnest thought …. Feeble-mindedness produces more pauperism, degeneracy
and crime than any other one force … affects in some way all our people.” (cited in Wolfensberger 1975:34).[xiii]
Although these professionals
believed that their claims were somewhat true, their personal diaries reveal
that many regretted that their admittedly exaggerated message had gone as far
as it did (Trent Jr. 1994:141-2). Nevertheless, the legacy of the image of a menace
held firmly in the public imagination.[xiv]
Even before the 1920s, most doctors had realized their error and abandoned the
menace and eugenics rhetoric in favour of optimistic claims that their
residents could do well in community placements (Ibid:181). This change of
heart was conveniently catalyzed by the dire economic times of the Great
Depression but, unfortunately, that same economic reality made community job
placements outside the institution all but impossible. The custodial and
institutional model continued to be the dominant technology of caring for the mentally
retarded through World War II and into the early 1960s. In fact, more public
care facilities were built and expanded in the US between 1950 and 1970 than in
any other period (Ibid:250). 3.3.3
Normalization and deinstitutionalization
The
normalization movement, which became the dominant ideological framework of care
policies for people with intellectual disabilities from the late 1960s onwards,
had its roots in three significant forces (Trent 1994). I outline the key
points of Trent’s historical analysis of these forces and follow it with a
discussion of normalization and how it changed the social meaning of the
concept of disability. Trent demonstrates how normalization provided an
ideological route out of the growing dissatisfaction with institutional care
generated by the confluence of exposés of poor conditions in asylums by staff
and journalists, parent advocacy movements, and the state’s desire to reduce
spending on what was alleged to be costly institutional care (Trent Jr. 1994:264). The exposés began with public
accounts of “beatings and torture, depravation and cruelty, even killings,” as
well as mass benign neglect of residents by staff; the early accounts were
written by conscientious objectors (COs) working in institutions during World
War II as part of Civilian Public Service Teams (CPSTs) (Ibid:227-9).[xv]
Those accounts were followed up with more dramatic journalistic exposés of the
terrible quality of life in institutions.[xvi]
At the same time, parents of people with intellectual disabilities began to
share stories of the value of their children and their hardships in the
institutions and, aided by the disclosure of celebrity parents like Dale Rogers
and the Kennedys, to mobilize as a political force for change (Ibid.:230-44,
255). Parents and other advocates sought the closure of institutions and the
inclusion of their children in public education; they even pursued legal action
to achieve their aims (Trent Jr. 1994:257, 260; Roeher Institute
1996: 69,74). Finally, in addition to these
public concerns, the government was increasingly interested in finding
alternatives to institutions that were becoming too big and costly (Trent Jr. 1994:5, 260-8). It is important to recall that in 1973 the IQ requirement
was changed from 85 to 70 in the US, largely to reduce the number of people
being institutionalized (Trent Jr.
1994:261; Smith 1997:6). By the early 1970s, legislation in Canada and the US
was initiated to begin the closure of institutions and the movement of people
back into their communities (Trent
Jr. 1994:261-4; Roeher Institute 1996:7-8). It
was in this climate of change that the idea of normalization was imported from
Scandinavia in the mid-1960s and “elevated to a principle” in 1972 by Wolf
Wolfensberger (Trent Jr. 1994:262;
Wolfensberger 1972). Normalization represented a paradigm shift in care
and it provided the overt conceptual framework and rationale for
deinstitutionalization, alongside the less-publicized cost-cutting rationale (Rioux 1994b:97-8; Trent Jr. 1994:264). In 1975, normalization was adopted by the UN in its
declaration of the rights of mentally retarded persons (Roeher Institute 1996:22). After participating in the “pioneering” state
deinstitutionalization programme in Nebraska in the 1960s, Wolfensberger was
convinced that Goffman was right about the iatrogenic and dehumanizing effects
of the total institution (Trent Jr.
1994:262). He advocated strongly against institutions and for
inclusion of the retarded in normal life by providing support services for them
in the community (Newroth 1974:v;
Trent Jr. 1994:262). Wolfensberger impressed upon practitioners the message
of how detrimental most historical conceptions of the mentally retarded were to
their sense of self-worth, well-being and ability to grow because they were
always considered deviant and unnatural (Wolfensberger
1975:3-5).[xvii]
He created a new concept of the retarded person as a developing individual; this concept underpinned his ideas of
normalization and community-based care (Ibid:15-17). Wolfensberger’s
humanist approach recognized that in order to flourish, people had needs and desires
beyond physical survival and that the caregivers needed to provide for them.
These desires included a place to belong, to develop meaningful social
relations, to do meaningful work, and to personalize one’s environment and
belongings (Ibid:2-6). His residential model, group homes, incorporated these
ideas through small groups living in regular urban homes, and having attendant
caregivers who come in for support (Trent
Jr. 1994:261-3). These homes had only one or two people to a room, were
decorated and welcoming, and encouraged more individual choice for residents,
in addition to work and activities. Group homes, and later other models of
independent and assisted living, have been the primary models of residential
state care advocated since the early 1970s. As I discuss further in Chapter 4,
the funding and legislative changes accompanying this movement in Canada, the
US, and France were part of what made the L'Arche model possible. From
1981-85 Canada reduced its 40 large facilities (100+ residents) to 27 and has
since remained at this level (Roeher
Institute 1996:52). From 1981 to 1992, the number of Canadian residences
for people with intellectual disabilities accommodating 4-9 people grew from
60% to 80%, and average residence size dropped from 26 to 14 people (Ibid.:52).
Currently, the best estimates of the institutional population in Ontario indicate approximately 1,100
people in large congregate care (Brown 2002a). Although US national figures
vary, one state, Washington, currently estimates that living arrangements for
people, adults and children, with developmental
disabilities are split as follows: 65% live with
their families, 20% have their own home or apartment, 13% live in group care
(institutions, group homes, foster care, nursing homes), and 2% live elsewhere
(hospital, jail, homeless) (WSDSHS
2002).[xviii]
3.3.4
Problems with deinstitutionalization and normalization
Most
stakeholders in the field of disabilities would agree that the current support
system web avoids the large-scale systemic neglect, abuse and exploitation of
residents by their caregivers that was revealed to be so common in institutions
in Canada and the US as late as the 1960s. At the very least, leaving the
institution provided more freedom for those who were high-functioning enough to
live on their own and find work. Such people, however, are rather uncommon
given that the results of deinstitutionalization have been mixed.
Deinstitutionalization did not turn out to be the panacea it had once seemed,
for people who were mentally retarded or their families. Lack of proper
preparation, training, or material support to those leaving, and to the
families and communities they often returned to, has inhibited the success of
deinstitutionalization and community care in two ways. Real social and economic
integration has eluded most ex-residents. Neglect and abuse have often
continued in the new locales but on a smaller, less detectable scale. In many
ways, deinstitutionalization shifted the responsibility, and the burden
associated with the many costs of care, onto families, low-paid direct care
workers, and community volunteers. This reality was largely obscured by the
overtly positive language of independence, community care, family values, and
consumer choice. While normalization usefully supported the move to more
human-scale residences and systems of support, practitioners had not
anticipated the lack of community interest and ability to welcome back those
people it had sent out years before. Lack of funding
One
major factor inhibiting the success of deinstitutionalization and
community-based placement movements was lack of funding and its impact on the
quality of execution. Since initially
the state’s main focus was on getting people out of the institution, little
attention was given to preparing the residents to do so, or to supporting them
through the transition to community life once they left (Barham 1992:12, 152; Jacobson, Burchard et al. 1992:8; Trent
Jr. 1994:229, 270). Departing residents were not taught the necessary
life and work skills to survive or integrate well (e.g. shopping, social
interaction norms, bus routes, interview skills) (Edgerton 1993 (1967); Trent Jr. 1994:229). The kindest interpretation of this approach is that
it was short-sighted; the toughest is to see it as irresponsible abandonment by
the state. Follow-up studies generally show that life outside the asylum can be
as bad or even worse for some people (Langness
& Levine 1986:195; Barham 1992:10, 24-32, 60; Edgerton 1993 (1967);
Ferguson 1994; Trent 1994:270). Some do fair better outside however (Brown et al.
1997; Edgerton 1993). It is not clear from the
literature whether caregivers would have provided more support and follow-up if
they had had the funds; this is a moot point, however, because they did not
have the funds in the early stages, or later on. In the late 1960s and early
1970s, US state governors began making massive cuts to the operating budgets of
institutions, often eliminating up to half of jobs and funds with no initial
reduction in clients (Trent Jr.
1994:256-8).[xix]
Even with many closures, much federal money remained tied up in institutions
instead of having been transferred, as planned, to local community service
organizations or the family and individual; this resulted in inadequate local
budgets (Barham 1992:19; Trent Jr. 1994:267; Morris 1993). Once in the community, former residents were routinely
unable to overcome the years of oppressive institutional socialization that had
taught them to be passive, dependent and compliant. They lacked necessary
reintegration training and community-based supports which could have helped
them to become independent enough to create a healthy life outside (Murphy 1990:43-5, 56; Barham 1992:121;
Edgerton 1993 (1967)). Persistent negative social attitudes
A second factor inhibiting the
success of community-based living was the persistence of negative social
attitudes. Diachronic ethnographic work with intellectually disabled people,
who were released from care under the banner of community integration in the
1970s and 1980s, showed that they went to great lengths to hide their past.
They endeavoured to create “a cloak of competence” in order to “pass for
normal” because of what they felt to be an unbearable stigma attached to mental
retardation and the institutions (Edgerton
1993:185; Hingsburger 2001b; Brown 2002a). Former residents often led lives that were “lonely
if free” (Barham 1992:24-32). Other research shows that
communities were not ready to accept them. The stigma made employers and
neighbours reticent, and even fearful, to interact with people with intellectual
disabilities. This made it very difficult to integrate, work or make friends (Edgerton 1993 (1967); Hahn 1985:94;
Murphy 1990:85, 132; Barham 1992:60, 152; Jacobson, Burchard et al. 1992). This awkwardness still prevails today and is
stressful for the person with a disability (Murphy
1990:122, 86). A 1994 report from Newfoundland, emphasizing the
value of supporting individuals and preparing communities better, acknowledged
the continued existence of this strain on relations (Roeher Institute 1996:33). Social rejection and neglect are
not surprising given that the same social values and beliefs that evicted
intellectually disabled people from the community years ago have not
disappeared (Heal, Haney et al.
1988; Murphy 1990:86; Barham 1992:151; Amado 1993a). Exploitation and active abuse are also still
evident, however, generally, and even within families. One example of
exploitation is found in a 1989 legal victory by a man with an intellectual
disability. He had worked for 16 years in a workshop for almost no pay and won
the right to receive minimum wage (Roeher Institute 1996:87). In addition, researchers have shown many examples of
emotional and physical neglect and abuse of disabled children by their families
(Enns 1999; Hingsburger 2001b). While this thesis does not deal with informal,
family care arrangements, it is vital to highlight that home-living is often
not a perfect solution for people with intellectual disabilities or their
families (Barham 1992:104, 16). The strain experienced by many
informal, unpaid caregivers, such as parents and families of children with
disabilities, is partly rooted in a lack of adequate support and respite
services provided for them. At McMaster University, the CanChild centre for
disability research has been conducting a large quantitative assessment of the
negative health effects on informal caregivers resulting from the added stress
of caring for a disabled child at home (CanChild
2002). Another Ontario study found that high stress and
lack of support for nurses resulted in the very high absentee rate of 8.5%
(Bauman 2001). These studies raise the question of who is looking after the
rights of the family and formal and informal caregivers amidst all these
changes. Researchers of the ethics of care are also examining these questions (Tronto 1993; Kittay 1999). In Chapter 6, I address the question of how L'Arche
supports caregivers. Lack of support, training, and rationale for caregivers in the new
models
Support issues are also a problem
for formal caregivers. The third significant factor inhibiting the success of
community care relates to the formal caregivers and seems to be the least
well-understood, or studied. Jacobson et al (1992) call for more research to
understand the effects of the shift to community-based care on staff. They cite
staff as the key resource in mental health services, and the key social contact
for mentally challenged clients, and point to problematically high staff
burn-out and turnover rates (1992:198,
220, 233 244, 260). Jacobson et al demonstrate a positive relationship
between support for staff satisfaction and the quality of life of residents
(Ibid:11, 221, 233), as have other researchers (Braddock and Mitchell 1992). It seems that, overall, staffs have been trained in
the technical details of supporting people in new locales outside institutions.
They have not, however, been adequately guided in the new ideologies of care and the attitude shifts towards people with
intellectual disabilities that these ideologies
espouse. Indeed, it is in the interface of
direct care worker and client that the limits of these ideologies of acceptance
and respect are most vigorously tested and strained. Yet, care workers have not
been supported in order to adjust to the significant changes in caregiving,
power-sharing and relationship dynamics that are expected of them (Jacobson, Burchard et al. 1992; Ungerson
1999). For example, caregivers have identified the tension
between ideologies that ask them to share power and decision-making with
clients while not giving caregivers any substitute means to feel valued as
professionals (Jacobson, Burchard et
al. 1992:206, 230). Tension also inheres in goals that ask them to
support people’s independence; goals that can lead directly to job obsolescence
for workers who are already vulnerable and underpaid themselves (Braddock and Mitchell 1992; Jacobson,
Burchard et al. 1992:197, 206). Finally, independent living and community care can
generate a great deal of role ambiguity for direct care workers. They feel
pressure to work beyond contractual agreements; in someone’s home, many of the
tasks required of them look and feel more like aspects of friendship than
employment (Jacobson, Burchard et
al. 1992:206, 214-16, 233; Ungerson 1999). Personal and professional boundaries are harder to
maintain in the face of a lonely client who is otherwise bereft of support or
social contacts. Part of the issue here is that the
ideology of community care, and its daughter movements discussed in the next
section, is concerned exclusively with the well-being of the clients. The
ideology assumes that by simply declaring that people with intellectual
disabilities are worthy, equals, and have rights, a benevolent desire to enact
this radical mandate will automatically be instilled in caregivers. It seems
that this is not the case, however. In order that the caregivers do this new
work well, it appears that two things are needed. The first necessity: a
complementary ideological rationale that shows caregivers why supporting
community care, independence, and good relations with clients make sense for
them too. The second: a system of training that better prepares staff to deal
with the tensions of this new power-sharing and more intimate, interpersonal
reality as well as ongoing support mechanisms for staff. Both factors are
discussed in this ethnography. 3.4
Contemporary
approaches to intellectual disability
To the politician “community care”
is a useful piece of rhetoric; to the sociologist, it is a stick to beat
institutional care with; to the civil servant, it is a cheap alternative to
institutional care… to the visionary, it is a dream of the new society in which
people really do care; to social services departments, it is a nightmare of
heightened public expectations and inadequate resources to meet them.” (Morris
1993:4) In this section I outline the
range of living arrangements available for people with intellectual
disabilities and the social movements behind them. Next, I discuss the major
approaches to understanding the causes of intellectual impairment and
intellectual disability. Overall, it seems clear that there is no single
caregiving, support or residential model that is appropriate for all people
with intellectual disabilities, given the wide variety of their needs and
desires. Nor are any of the four main approaches to studying and understanding
intellectual disability adequate on their own; each approach provides a
distinct perspective. Even the much-maligned medical approach, which has, in
fact, been the source of many problems faced by those with disabilities,
continues to play an important role in improving their lives. This broad
perspective on the contemporary disability scene provides the final piece of
background on which this particular ethnography of L'Arche will be painted. Living arrangements
Several
living and caregiving arrangements are currently offered in Canada and the US;
people with intellectual disabilities and their guardians can choose what
arrangements seem most appropriate and desirable for each individual. There are
advocates of each option and increasing recognition that people with
disabilities are not a homogeneous group with identical needs that could all be
met by a mass solution (Morris 1993). Unfortunately, funding for the other alternatives
has never been sufficient to allow the service system to support everyone who
needs assistance (Barham 1992:19;
Morris 1993:4; Trent Jr. 1994:274); thus, availability and funding limit people’s actual range of choices because of long
waiting lists for services and placements. Authorities
estimate that the majority of people with intellectual and developmental
disabilities live at home with their families. Numbers, however, are impossible
to ascertain for two key reasons: people who do not use the social services
available or apply for the tax credits are not “known to the system”; many
people (or their parents) do not identify as having an “intellectual
disability” in the census due to definitional confusion, oversight and stigma (Brown et al. 1997; Brown 2002a; WSDSHS
2002). When the need for support or physical restraint by
doctors, nurses and social workers is too substantial to be accommodated in
other forms of care, or if they have found it too painful to adjust to life
outside the institution, many people continue to live in large institutions.[xx]
Again, numbers are difficult to estimate; different reports indicate 1,100
people currently in institutions in Ontario, 10,500 to 30,000 in Canada.[xxi]
A large number of people are living independently; this is a category which can include receiving a number of support services in and outside the home to assist the person in personal hygiene, home maintenance, transport, and access to education and work. There are also people who live in small-sized congregate care, like L'Arche, typically called group homes. As noted earlier, 80% of Canadian residences now support only 4-9 people (Roeher Institute 1996:52). Finally, there are smaller numbers of people in various situations such as hospitals, foster care, psychiatric care, and the homeless. A 1995 Quality of Life survey in Ontario investigated living arrangements for people with developmental disabilities in Ontario who receive services and are thus known to the system (roughly 23% of all people with developmental disabilities; 25,500 people) (Brown et al. 1997:15).[xxii] While all those surveyed received some services, 25% indicated that they live independently, 46% with family, 19% in small care, and only 10% remain in large, congregate care settings with more than 10 people (Brown et al. 1997:13-17). Disability movements
The
movements behind this proliferation of options are numerous, although most stem
from the earlier initiatives of normalization and community-based care and
living. The main ones include: independent living, community
living/integration, self-advocacy, consumer model, and disability rights (Rioux and Bach 1994; Trent Jr.
1994:262-5). These movements are linked with broader social
movements: civil rights, consumerism (client as decision-maker), self-help, and
de-medicalization (DeJong
1979:24-31). The disability movements all aim to maximize the
transfer of control over decisions from caregivers and the state to the people
with disabilities in order to minimize dependency, establish legal protection,
and to empower people (Busselle
1989; Trent Jr. 1994:272-3; Roeher Institute 1996). Execution
of the ideals, however, is quite another matter and lack of funding, among
other reasons, makes these ideal provisions far from common. The government
cost-savings agenda tends to dominate the reality behind public statements
about community integration, independence, choice, and access (Albrecht 1992; Morris 1993:5; Roeher
Institute 1996). American funding agents are as likely to benefit
from the community care movement (through cost-savings) as are the clients (Albrecht 1992:244). Independent living and consumer choice principles
dodge the issues of structural power imbalances; they effectively spin the lack
of funding and “public neglect” into an appearance of “benevolent minimal
government” (Ferguson 1994:173). Scarce resources mean prioritizing needs so that
while basic physical needs are now usually met, resources to support
educational, affective and relational needs are insufficient and this inhibits
genuine integration (Jacobson,
Burchard et al. 1992:15; Radford 1994:22-4). While people with intellectual disabilities are now
more of a physical presence in most
cities, the majority of these people are still not very involved in their communities (Langness
and Levine 1986:195; Amado 1988a:294; Desjardins 1998). Again,
the question of order: Is it best to work towards physical integration and hope
that this will diminish social rejection of people with disabilities?
Alternatively, would it be better to work first, or simultaneously, on changing
social stereotypes directly? Approaches to understanding
developmental disabilities
“There are many reasons why people
are not able to develop the ability to do the things that are socially expected
of them. They include, among other things, genetic inheritance, chance
occurrences both before and after conception, injury, social attitudes,
environment, and sometimes a combination of several things.” (Brown 2002a) There are four basic approaches
from which the understanding of developmental disabilities can be established.
Researchers at the Roeher Institute in Toronto have developed a helpful
typology of these approaches in order to show the usefulness of each
perspective in grappling with the problems faced by people with disabilities in
a holistic way. The first two approaches take a Bio-medical and Functional
perspective, and focus on changing the individual (Roeher Institute 1996:xii, 13-14). The third and fourth approaches, Environmental and Rights-Outcome, are attempts to show that “disability is more than
an individual condition.” This means that the disabling effects of the
impairment are exacerbated both by socio-environmental surroundings with which
the person must interact and by political inequality stemming from inaccessibility
of services (Ibid: 14). a)
Bio-medical approach
The
dominant approach to developmental disability continues to be Bio-medical, which assumes “disability
is caused by a mental or physical condition that can be prevented or
ameliorated through medical” intervention (Roeher
Institute 1996:14). The individual or foetus is seen as sick or
deficient and the impairment or condition is the focus of attention (Zola 1989:349; Hahn 1985:88-9; Morris
1993:35). There are three dimensions to the Bio-medical approach: determining causes
of mental retardation and intellectual disability and other developmental
disabilities, developing ways to cure or alleviate the impairment or disabling
condition, and developing ways to maximize prevention of further cases of
disability. The
biological causes of developmental
disabilities are often unknown, but they are most commonly “attributable to
mental retardation, cerebral palsy, epilepsy, neurological impairment, or
autism” (Busselle 1989:9). Mental retardation and intellectual disabilities
“can be caused by any condition which impairs development of the brain before
birth, during birth or in the childhood years. Several hundred causes have been
discovered, but in about one-third of the people affected, the cause remains
unknown. The three major known causes of mental retardation are Down syndrome,
foetal alcohol syndrome and fragile X.” (ARC
2001). ARC, a major US self-advocacy association,
identifies five categories of causes including
genetic conditions (inherited or caused during pregnancy [e.g. Fragile X
syndrome, PKU-phenylketonuria, and Down syndrome]), problems during pregnancy
(alcohol, drugs, malnutrition),
problems at birth, problems after birth (diseases, accidents,
environmental toxins), and poverty or
cultural deprivation (See appendix 3.3 for full descriptions) (ARC 2001). The discussions of treatments,
cures and preventative measures overlap. Some medical treatments help to alleviate
the disabling effects of an impairment while other precautions, medications,
and regimens can dramatically reduce or eliminate the impairment altogether,
especially with early intervention. For example, antibiotics and treatments for
heart defects have helped raise the average life expectancy of people with Down
Syndrome from 10 to 55 years in the period 1910 to 2000 (WSDSHS 2002). “People with cerebral palsy have benefited from
medical and technological advances that help them with communication and
mobility” (WSDSHS 2002). One research report estimates that over 11,000 cases
of mental retardation have been prevented in the US in the last 30 years
because of medical advances such as measles, Hib and rubella vaccines, and
newborn screening (See Appendix 3.3) (Alexander
1998). Other interventions such as environmental lead
removal, child safety seats, and early intervention programs with high-risk
infants have also been effective prevention tools (WSDSHS 2002). Probably the most pervasive
so-called solution in recent years, however, is the practice of pre-natal
genetic counselling and early screening of the foetus. This solution tests for genetic pairings or
abnormalities that point to a risk of developmental disability for the baby (Alexander 1998; WSDSHS 2002). If counselling or tests show a high risk of
disability, parents can choose not to conceive or have an abortion in order to
prevent the birth of a disabled child (Jones
1998; Enns 1999). Herein lies, at least in part, the issue of an
exclusively bio-medical approach to disability; it assumes that what is
abnormal is undesirable. As medical ethicist Hauerwas has cautioned,
intellectual disability, unlike cancer, usually cannot be eliminated without
eliminating the person (Hauerwas
1986). Other associated methods of prevention have been the
segregation, enforced sexual abstinence, and mass sterilization, associated
with eugenics, of people with intellectual disabilities (Simmons 1982; McLaren 1990; Trent Jr. 1994). While as a society we often
justify such public measures and family decisions with the argument of
eliminating suffering, Hauerwas suggests that we ask ourselves, “Whose
suffering are we really trying to eliminate?” (Hauerwas
1986:159-69). While people with intellectual disabilities can
experience physical pain, so do many other citizens. Further, it is the pain of
social rejection that seems to affect them most deeply, the fault of others,
not their own. While most people do not wish prospectively for suffering, many
would agree that, in retrospect, it can be full of meaning and insight for them
(Wendell 2002). This sentiment is expressed by many parents of
children with disabilities who say that despite initial confusion,
disappointment, and even anger, they quickly grew to love and enjoy their
children (Fine and Asch 1988; Taylor
and Bogdan 1989; Bogdan and Taylor 1992; Amado 1993a; Kittay 1999; Landsman
2001). It is, however, also important to
note the very real hardships, stress, and material and temporal resource
constraints faced by many families with a child who is disabled (Tronto 1993; Enns 1999; Kittay 1999;
CanChild 2002). It is likely that in many cases, these families,
particularly poor families, would be less concerned about having a disabled
child, and the associated “burden of care,” if they could be assured of
adequate support services for their child and respite support for themselves (Kittay 1999). It is the lack of these supports which gives
credibility to claims that disabled children destabilize families and usurp
attention and resources away from other children (Singer 1979; McLaren 1990; Kittay 1999). Lack of support is also a factor in parent’s opting
out of life-saving surgery for their children as well as other forms of neglect
and abuse (Enns 1999; Hingsburger
2001b). b)
Functional/Adaptive approach
The
second possible approach related to the individual is functional or adaptive.
Both derive from normalization principles and an economic perspective on the
lives of people with intellectual disabilities (Hahn 1985). This approach assumes that a key capacity of
citizens is their productivity and considers people’s economic self-sufficiency
to be a priority. To achieve this, the functional
or adaptive approach examines closely
how the impairment affects a person’s “functional incapacity” in the world and
seeks solutions to help people adapt and improve their skills for self-care and
employment-related tasks (Roeher
Institute 1996:15). As a behaviour and skill-focused perspective, it has
generated many specific techniques for improving motor, vocational, social, and
life skills, as well as methods to deter behaviour judged to be inappropriate
or non-adaptive because it inhibits social integration (Roeher Institute 1996:15). Normalization is manifest here. There is the hope
that helping people with disabilities to improve their adaptive, social, and
developmental skills will aid them in achieving dignity and social integration (Wolfensberger 1975:17). This adaptive perspective was added to the official
AAMD definition in 1973 (Krishef
1983:8; Smith 1997). c)
Environmental approach
The
third approach moves away from the focus on the individual and brings into the
picture extra-individual factors such as structural environment and material
and political inequality. As discussed in section 3.2.4, this approach
reflected the growing insight that impairment on its own is only part of the
issue; often, environmental and social factors, and a person’s interaction with
them, are disabling. This happens
because physical environments are designed with a standard person in mind
rather than being adapted or adaptable for people with diverse abilities and
disabilities. Negative social attitudes that stigmatise and exclude people with
intellectual disabilities are also highly disabling in both their effect on a
person’s self-esteem and by the barriers created by discrimination in
employment and educational opportunities. For example, when education is only available
in one format, or there is no wheelchair-access to classrooms, the effect of a
person’s initial developmental impairment is greatly exacerbated. Environmental and social changes
have alleviated some of the barriers, dependency and stigma associated with
impairments (Roeher Institute
1996:16; Wolfensberger 1975:2-21). Legislation and changes in funding impact physical
requirements for public buildings, accessibility, adapted curricula and
ergonomic innovations as well (Cooper
1994; Roeher Institute 1996:16). In the US, the Americans with Disabilities Act (ADA)
has been a major development in this area; it legislates and provides funds for
proactively removing environmental barriers. Equivalent legislation has not yet
been enacted in Canada (1990; Roeher
Institute 1996:18-23). d)
The Rights-Outcome approach
The
fourth approach takes a political perspective on disability concerns. Advocates
of this approach prioritize the achievement of equal human rights for people
with disabilities by establishing legal protection from discrimination (DeJong 1979:24; Roeher Institute
1996:14-19). Such protection is more stable than what a charity
or liberal goodwill framework might provide (Roeher
Institute 1996:17). Rights are useless, however, if you can’t access the benefits thereof, such as
education, work, and leisure. Disability rights advocates, and others concerned
with the ethics of caregiving and social welfare, thus argue that additional support must also be provided
in order to facilitate access which will lead to equality of well-being; as an outcome, not just a possibility (Tronto 1993; Rioux 1994b:86; Gewirth
1996; Roeher Institute 1996:17; Kittay 1999). The Canadian Federal Charter of Human Rights
protects people with disabilities against discrimination but does not provide
the same legislative obligation, or proactive financial incentives of the US
ADA (Bach 1999; Cohen 2001a, b). A rights-outcome approach also
encourages a shift away from that side of normalization which has been
interpreted to mean that people with intellectual disabilities must be less
like themselves and more like some standard, normal person. These advocates,
including self-advocacy groups such as People First, reject the
historically-dominant view of disability as something deviant and in need of
correction (Goffman 1963). They argue instead that disability is a normal,
inevitable element in a diverse society (Taylor
and Bogdan 1989; Roeher Institute 1996:17, 166; WSDSHS 2002). A rights approach evaluates policies and forms of
care in terms of how well they contribute to helping people with intellectual
disabilities achieve self-determination,
equality, and democratisation (Roeher
Institute 1996:xii); or, as Rioux put it, rights provide a basis for
pluralism (Rioux 1994b:97-8); for being who you want to be. In chapters 4 and 6, I elaborate on how L'Arche further encourages
and trains caregivers to value diversity and disability by explicitly
redirecting attention from a person’s deficits to their gifts. The
legislative solutions secured for people with intellectual disabilities by the
rights movement form a strong base to build upon but are insufficient on their
own. Integrating people with disabilities into communities must be as much
about changing public attitudes as it is about physical placement and legal
protection. A rights model is limited; while the state can enforce caring for marginalized people materially, it
can not force people to care about
them (Ignatieff 1984:13). Furthermore, a rights-outcome approach must specify
differences between groups in order to achieve protections and support for
them. This highlights how they are special, whilst some people with
developmental disabilities want instead to be “ordinary” (WSDSHS 2002). All four approaches represent
important dimensions of disability that need to be orchestrated in order to
develop effective solutions to the concerns that people with intellectual
disabilities face today. Nevertheless, there is a clear need for a way to
encourage greater public acceptance of people with disabilities as they are;
even an appreciation for the contribution they have to make to society. Current
community care schemes continue to falter when faced with public uneasiness
with the disabled and this inhibits (re)integration (Radford 1994:22-4). We need to examine the public beliefs that underlie
people’s discomfort and prejudice, in order to generate a rationale that offers
a different perspective on the disability question for them. This ethnography
seeks to show that the L'Arche philosophy and model offer at least some
promising new insights in this direction. 3.5
Conclusion
This chapter provided a review of
the historical and contemporary features of Canadian and American attitudes
towards people with developmental and intellectual disabilities and the
technologies of care that have emerged from those attitudes. I have argued that
the lack of training and support for staff, in order to learn how to adjust to
the new models of care, is at least part of the reason the models have not
achieved the anticipated change in well-being for people with intellectual
disabilities. Institutions, their administrators, and caregivers should not be
viewed as the only issue. While some doctors and caregivers were unkind and
even cruel, these people are in other ways only the most visible symptoms of
broadly held social values. Nevertheless, this chapter has demonstrated how
important the attitudes that we bring to our interactions with people with
disability are to how we experience
them. As such, my analysis indicates a dire need for direct attention to
changing the attitudes, values and beliefs held by caregivers in the field, and
eventually the general public. Although generally further along than the
public, families could also use assistance in learning to see and appreciate
the unusual gifts of people with intellectual disabilities. I also argue that we continue to
have a need for a variety of residential and care options for people with
intellectual disabilities given their diverse needs and desires. L'Arche offers
one possible model for greater well-being. It is unrealistic to assume that
every family who has a child with a disability is going to be willing and able
to care for the child (and future adult) well and provide sufficient
stimulation and opportunities for social contact, but also unfair, to the
family as well as the child. By placing the full burden of care on a family
without providing a proper system of support, the government is ensuring great
strain on the family. It also invites neglect or active abuse at the family
level and this is no less unjust when it happens in homes than in institutions (Enns 1999; Hingsburger 2001a, b). In Chapter Four, I contextualize the early L'Arche
dynamics and philosophical development within the history of disability and
care. 3.6 Endnotes
[i] The Roeher Institute was the National Institution on Mental Retardation, and the Canadian Association for Community Living was the Canadian Association for Retarded Children (Roeher 1996:7). [ii] I do not specify page numbers for Brown 2002 because I received an advance copy of the chapter in which page numbers were not yet confirmed. [iii] I found that most medical, statistical and social scientific literature did not specify a definition. This made it difficult to discern precisely who particular studies referred to, and thus whether things such as funding are actually changing, versus simply appearing to change as a result of definitional changes. [iv] For example, California residents wishing to qualify for lifelong state support must demonstrate that the developmental disability manifested before the age of 18, a full 4 years sooner than the federal definition allows (CSCDD 2002). Second, ARC relies on both this and the AAMR definitions and includes people with developmental issues such as FAS, due to “use of alcohol or drugs by the pregnant mother” (ARC 2001); whereas Washington state, using the same definitions, specifically excludes them (WSDSHS 2002). [v] In Washington, fully a third of “at risk” infants “who receive early intervention services do catch up with their peers, and don’t need further special services after age three” (WSDSHS 2002). [vi] Based on a total US population estimate of 270 million (Philip’s 2000). But see Brown et al (1997) regarding issues with prevalence estimates in this field. [vii] Definitional changes in both categories since the ARC’s estimate make the numbers difficult to assess. [viii] Based on a total Canadian population estimate of 30.6 million (Philip’s 2000) [ix] Mental deficiency was then controlled by the National Institute for Mental Health (NIMH) (Trent Jr. 1994:245). [x] See appendix 3.1 for assumptions. The 1992 assumptions were the same as this 2002 definition except that #4 was not included in 1992. [xi] See Macdonald (2000) regarding ambiguous results of label changes on attitudes. [xii] The primary changes are: the addition of a fifth assumption (#4) which specifies that the rationale behind the classifications is the need to develop a useful support profile; the term “significant limitations in” intellectual functioning replaces “significantly sub average;” and the description of all adaptive skill limitations has been shortened to “conceptual, social, and practical” in the basic definition, with a separate expanded discussion of specifics. [xiii] And in 1915: “Their fecundity, their lack
of control, the menace they are, the degradation they cause, the degeneracy
they perpetuate, the suffering and misery and crime they spread … he is
responsible to a large degree for many, if not all, of our social problems”
(Wolfensberger 1975:34). [xiv] Unfortunately, issues of representation of people with disabilities continue to be a problem even today (Walters 2001; Morris 1993) and continue to frustrate genuine community integration and relationships for them (Murphy 1990; Amado 1993). [xv] The 2000 COs were primarily Quakers, Catholic Workers, Mennonites, and Brethren and their working experience gave credibility to their claims. Incidentally, it was these men who formed the National Mental Health Foundation in 1946 to gain voice for these issues (Trent 1994:227-8). [xvi] In 1958, a Life magazine journalist even found many inmates had higher IQs than employees (Trent 1994:253). Two well-known exposés are articles by Pierre Berton (1959, Orillia, Canada) (Simmons 1982:xv) and Geraldo Rivera (1972, Willowbrook, NY) (Busselle 1989:20; Trent 1994:227, 255-8). [xvii] His seven positions of the mentally retarded were: sick, sub-human organisms, a menace, an object of pity, a burden of charity, a Holy Innocent, and finally his model - as a developing individual (Wolfensberger 1975:2-17). [xviii] Professor Ivan Brown at University of Toronto cautions that statistics in this field must be read with caution because of a lack of consistent definitions. For example, this source does not specify if these figures refer only to people who are “known to the system” or total estimates, nor does it specify if it is based on prevalence or incidence figures. Brown indicated that in Canada for example, there are no records or tracking systems for people who have left the social services system, or who never entered it (Brown, personal communication 2002). See also Brown et al 1997. [xix] Trent shows this state cost-costing agenda being notably lead by then governors Ronald Reagan and Nelson Rockefeller (1994:256-7). Ironically, these cuts came on the heels of the new (1965) Kennedy foundation for research into the condition of mental retardation. [xx] A 1995 study found that 95% of people with intellectual disabilities, who still live in institutions, receive support services in “most areas of life.” 57% also have physical disabilities and their social workers report that over half of residents have “behaviour problems” (34% are moderate problems and 22% are marked) (Brown et al. 1997:22-6). [xxi] These figures come from (Brown 2002b, Roeher 1996:27, CACL 2001) respectively. Note that the population of Ontario and Canada are approximately 11 million and 30 million respectively. [xxii] There is little information on the roughly 77% of people estimated to have a developmental disability but who do not receive services (Brown 1997:15) and so these estimates do not include them. |