3 - Historical review of intellectual disability

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, 4^th 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.