P. J. Cushing 2003

 

 

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)