In this article I propose that the experience of people categorized as having intellectual disabilities is inadequately represented by current disability theory, premised, as much of it is, on the socially constructed duality between disability and impairment. I argue that representation of intellectual disability within the wider world of disability in general will only be achieved by thinking of disability on a continuum. This should preserve individual identities while reducing categorization and the attendant essentialist versus constructionist conflict. Debate can then move to a consideration of what methodologies are appropriate to the inquiry.
Only a few years ago, Chappell (1997) concluded an article with these words.
I end with a plea that writers in the disability movement keep the question of learning difficulty in their minds and ask themselves whether the empirical or theoretical work in which they are engaged is solely about physical/sensory impairment (if it is, this must be made clear), or is it about disability. If the latter, the analysis must address the question of learning difficulty. (p. 59)
In the following pages I give some consideration as to why this situation persists. My comments are focused on one particular line of inquiry that has perhaps done more than any other to propel discussion within the emerging field of disability studies. The sheer volume of debate occasioned by what has come to be known as the “social model of disability” (Finkelstein, 1980: Oliver, 1992; Union, 1976) would demand attention if only for its impressive word count. However, the implications for people with disabilities themselves, for their supporters, for social policy, and for academics are so pervasive that this perspective fully merits the attention it continues to generate.
My particular interest here is with the theoretical space offered by the model to those people variously labeled as having learning difficulties (the preferred terminology of the United Kingdom self-advocacy movement) or mental retardation, which will be more familiar to readers of this Journal.
When Bogdan and Taylor (1994) stated that “Mental retardation does not exist” (p. 8), their comment was, I suggest, designed to imply that the category had a conceptual rather than an actual existence. Now perhaps better known internationally as intellectual disability, the term nevertheless retains for some an empirical foundation at odds with its socially constructed nature.
Given the ontologically contested status of the phenomenon of intellectual disability, it is not surprising that many trees have been chopped down and much ink spilled by commentators and theorists whose goal is to advance their own interpretations. However, when I use the term intellectual disability, I am fully aware that it is a compromise, aware of its limitations and connotations, but also aware of the need to use some order of words to engage minds. Finally, I am aware, too, of Wittgenstein's (1953) remarks on how “a whole cloud of philosophy is condensed into a drop of grammar” (p. 222).
As is often the case, this apparent neglect of intellectual disabilities by mainstream academics/activists has some history attached. In what follows, I attempt to outline the theory proposed by proponents of the social model, with some reference to its origins and purpose. This is the main focus of Part One. I then offer a critique based on recent work being undertaken by commentators operating from a perspective more closely aligned to the sole concerns of intellectual disability studies. I also provide some historical reflections on the organization of difference.
I conclude by suggesting that the proposed organization of difference that divides the concept of disability has taken place at an ideological level. It is, therefore, at this level that further work needs to be undertaken. This would help to secure representation for those individuals with intellectual disabilities in all matters—social, economic, academic, and political—as well as providing more open debate in the growing discipline of disability studies.
I begin this analysis, then, with a brief journey into the recent past as I attempt to re-examine the origins of the social model in order to consider how far it goes in providing an adequate description of the total experience of individuals with disability.
In order for people to understand what it is like to be disabled, we have to understand the totality of that experience, and we have to resist attempts to divide up that experience, either in ways it has been done in the past by talking about the different experiences of different impairments—blindness, deafness, physical disability, learning difficulties and so on—or more recently, how it is increasingly being done in compartmentalising off bits of our lives and wanting to deal with them in little bits. (Oliver, 1995, p. 17)
In Britain, at least, the landscape of disability studies is dominated by what has come to be known as the social model of disability. This model originated with the Union of Physically Impaired Against Segregation, whose manifesto “Fundamental Principles of Disability” (Union, 1976) outlined the central ideas. Subsequently, given more theoretical shape by Finkelstein (1980) and Oliver (1992), the social model has been crucial to the growth and development of disability studies as an academic discipline. Perhaps more important, it has contributed to the lives of many people with disabilities who have become politicized, educated, and empowered as a result.
In 1981, the Union of Physically Impaired Against Segregation gave way to the British Council of Organisations for Disabled People. A past chair of this organization, Campbell (1996), an activist with disabilities, spoke of the social model as “the unique hallmark of our struggle” (p. 79). But what exactly is the social model? What does it look like, and what does it mean?
The Definition Debate
It is standard practice in offering critiques or explanations of complex concepts to take refuge in the dictionary. In this case there is no such recourse available. However, it is in the nuts and bolts of definitions that the framework of the original social model was constructed. I contend that some appreciation of this is necessary in order to comprehend the subtleties of the design.
The Report of the Professional Affairs Board of the British Psychological Society into Psychology and Physical Disability in the National Health Service (1989) provoked Finkelstein and French (1993, pp. 26–33) into compiling a working definition of disability and impairment that removed the notion of personal tragedy from the conditions described.
Finkelstein and French (1993) did this by rejecting the medical assumptions prevalent at the time and replacing them with a perspective that located disability within the social realm. They based their definitions on previous work carried out by the Union of the Physically Impaired Against Segregation and Disabled People's International in an effort “to avoid confusion and to provide a more fruitful way of looking at the psychological aspects of impairment and disability” (p. 28). The following definitions are the result.
Impairment is the lack of all or part of a limb, or having a defective limb, organ or mechanism of the body. Disability is the loss or limitation of opportunities that prevents people who have impairments from taking part in the normal life of the community on an equal level with others due to physical or social barriers. (p. 28)
This definition should be compared to the position of Union of Physically Impaired Against Segregation (1976), in which disability was defined as
the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. Physical disability is therefore a particular form of social oppression. (cited in Finkelstein, 1993, p. 42)
An even earlier draft was proposed by the Disabled People's International in their constitution as follows:
Whereas disability has too long been viewed as a problem of the individual and not the relationship between an individual and his/her environment, it is necessary to distinguish between (a) disability is the functional limitation within the individual caused by physical, mental or sensory impairment, and (b) handicap is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers. (cited in Finkelstein, 1993, pp. 42–43)
These definitions appear to suggest that the social model rests on a perceived disjunction between the personal and the social, where impairment is defined as a biological fact and disability is seen as a social form of oppression. This distinction emerged from a desire to move away from a causal interpretation of impairment as a personal tragedy, with the individual as victim (Goodley, 2000, p. 30).
In order to demonstrate what he perceives to be the entrenched “disablist” attitude of society in general, Oliver (1990) offered the following extract from a questionnaire for people with disabilities from the O.P.C.S. (1986) survey taken from Martin & White, 1988:
Can you tell me what is wrong with you?
Are your difficulties in understanding people mainly due to a hearing problem?
Have you attended a special school because of a long-term health problem or disability?
Does your health problem/disability mean that you need to live with relatives or someone else who can help to look after you?
Does your health problem/disability prevent you from going out as often or as far as you would like?
Does your health problem/disability affect your work in any way at present?
In the variant interpretation, Oliver (1990) turns the questions around in order to implicate the design as oppressive:
Can you tell me what is wrong with society?
Are your difficulties in understanding people mainly due to their inabilities to communicate with you?
Have you attended a special school because of your education authority's policy of sending people with your health problem or disability to such places?
Are community services so poor that you need to rely on relatives or someone else to provide you with the right level of personal assistance?
Are there any transport or financial problems which prevent you from going out as often or as far as you would like?
Do you have problems at work because of the physical environment or the attitudes of others? (p. 8)
By changing the perspective, Oliver (1996) suggested that the direction of oppression moves from society to the individual. However, merely reversing the polarity of the argument does little to alter the premises. Further, the definitional puzzles outlined above are laden with value judgments that impose notions of what may be considered “normal.” In so doing they stretch the category of disability until, as Shakespeare (1996) noted, “‘everyone is impaired” (p. 96).
Interpreted in this light, a regional accent, a tattoo, myopia, a hangover, a temporary sporting injury, even a sense of worry might now be accommodated within the framework of disability. Oliver (1996a) himself is prepared to admit a sense of shyness to the list when he recounted his own social experiences. He said,
The point I am making here is that the social model is not an attempt to deal with the personal restrictions of impairment but the social barriers of disability as defined earlier by Disabled Peoples International (DPI) and the Union of Physically Impaired Against Segregation. (p. 48)
The recent (re)launch of Seroxat, an antidepressant, as a cure for social phobia seems to confirm that the neurobiological foundationalism that would ensure the categorization of all human foibles within the covers of the International Statistical Classification of Diseases and Related Health Problems—ICD-10 (World Health Organization, 1993) is not far away.
The insistence on unburdening the individual allows the emergent social models to relocate the negative effects of disability—however defined, however measured—within a social and organizational setting. However, the introduction of impairment as a binary component brought with it other difficulties.
To concede that impairment has a place even in definitions of disability is problematic for the social model project. Impairment forces us to consider how some conditions cannot be ameliorated by rearrangement of the social furniture or even alteration of the conceptual landscape. Could it be that in the world occupied by social constructionists, there are some things actually “out there” that individuals must deal with? Low (2001) alluded to this with his observation that it is more than the steps up to the front door that can prevent access to the Ritz hotel. He was not just referring to poor design here. Power and privilege conspire democratically against all nonmembers.
One does not need to try gate-crashing the Ritz, however, to experience prejudice. Substitute ivory tower for posh hotel and count the number of academics with disabilities who have managed to negotiate the rungs on the ladder to the top floor of the faculty building. In terms of exclusivity, the Ritz has nothing on the halls of academe. This door policy extends beyond the payroll. One of the successes of research efforts within the particular field of study with people who have intellectual disabilities is their participation within the process. The United Kingdom literature offers examples of commentaries (Chappell, 2000; Kiernan, 1999; Rodgers, 1999), examples too of participation in action (March, 1997; Minkes, 1995; Williams, 1999), but, as yet, the direct contribution by people with intellectual disabilities to research production is largely restricted to that which is done in tandem with academic allies.
Prevailing conditions continue to dictate that academic researchers find their careers obstructed if they attach greater precedence to research outputs valued by disabled people than to the blueprint laid down by academic departments. This turns out to be especially true when it comes to dissemination. (pp. 876–877)
This dilemma, occasioned by researchers who do not have disabilities and are operating in the field of disability studies, was explored earlier by Oliver and Barnes (1997). Their conclusion was clear. “We are not suggesting that only disabled people can or should do disability research and we do not believe that an accredited impairment is a necessary prerequisite for doing disability research” (pp. 811–812).
This debate resurfaced, however, just months later in a divisive exchange between Branfield (1998) and Drake (1998) over precisely who was allowed to “play ball.” The implications are that there are certain categories of individuals whose involvement and interests in the general field of disability studies will be privileged due to their orientation. As Duckett (1998) observed at the time, such thinking, rather than reflecting an advance in participatory work, merely “mirrors the oppression experienced by disabled people” (p. 625). The theoretical origins and implications that underpin this particular line of thought will be more fully explored in Part Two of this paper.
The commonality of disability, therefore, suffers a tension when differences of degree are admitted to the debate, and with the difficult issue of impairment, the tension threatens to divide the audience. What, for example, of the experiences of people labeled with an intellectual disability? According to Humphrey (2000), some people with intellectual disabilities, many of whom suffer impairments, are almost unable to discuss them for fear of “breaking the law and talking about impairments” (p. 67). This notion of there being an enforcing element that precludes the use of certain language is reinforced by Davis (1995), who suggested that “There is a tremendous conceptual gap between being impaired and being disabled. As soon as we use the term ‘disabled’ we add a political element: suddenly there is a disabler and a disabled” (p.10). Here again a dichotomy is present.
To accept impairment as socially constructed in the way that social modelers see disability as being socially constructed would dissolve the binary on which the social model arguments are based. There would simply be no necessity for such an arbitrary distinction. Disability would appear on a continuum rather than on either side of a divide (Marks, 1999, pp. 17–18). Dualism pervades the argument. The disability/impairment binary grew from an attempt at providing some discriminating criteria on which to build a theoretical account of oppression (Finkelstein, 1993, pp. 34–43).
Although this distinction separated disability and impairment conceptually and may have proven useful in setting the parameters of the debate, the impression remains that impairment is somehow less significant. The definitions above, proposed on the basis of this distinction, were very nicely worded.
Definitions, however, necessarily exclude more than they can say. In trying to account for a succession of categories, they fall foul of what Somers (1994) has termed a “universalism that contains its own inevitable exclusions” (p. 613). Hence, proponents of the social model, in attempting to provide an overall account of disability, fail to satisfy many individuals who feel themselves to be excluded by definition. As Swain, Finkelstein, French, and Oliver (1993) remarked, “Arguments over definitions are often reduced to supposedly technical purposes, but they are in effect part of the struggle to establish and legitimize one way of thinking over another” (p. 2).
Speaking of the disability movement in general, Aspis (1996) observed that
People with learning difficulties face discrimination in the disability movement. People without learning difficulties use the medical model when dealing with us (cited in Campbell & Oliver, 1996, p. 97).
In this interpretation the disability movement as characterized by social model adherents is in danger of becoming itself oppressive due to its treatment of certain sections of the population with disabilities. Resistance to this brand of the social model came initially from some individuals who felt disenfranchised by the wholesale annexing of disability as the sole province of people with physical disabilities.
The People First movement opted for self-advocacy as their preferred path to representation. Since then a second generation of academic authors has concentrated on disentangling the epistemological and ontological strands that bind the concept of disability and impairment implicit within the social model. Dowse (1999) alluded to this when she noted that “Cartesian assumptions which the sociology of the body explores will struggle to account for an impairment that lies in the intellect, in the realm of cognition—is this the terrain of the body or the mind?” (p. 137).
The situation of people with intellectual disabilities isolates the dilemma that the interpretation of impairment forces onto the debate. It is by now axiomatic that disability is socially constructed. However, by the same method of analysis, intellectual disability is also a social construction. Impairment, however, clings to the individual due to its biological origins. Although people with physical disabilities conceptually separate the notions of impairment and disability, the lives of people with intellectual disabilities reunite the two into a fusion of disability/impairment.
The oppositional character of the debate is revealed in the following words by Joyce Kershaw: “Learning disabilities—I don't like that, disability makes you believe that we are in wheelchairs and we can't do anything for ourselves, when we can” (quoted in Goodley, 2000, p. 208).
How the social model then impacts, or fails to impact, on the lives of people with intellectual disabilities will be the focus of the second section.
The social model cannot escape its origins. Because it was conceived and developed by those people with physical disabilities who were active lobbyists, it is no surprise that the social model reflects their aspirations. Its conceptual treatment of disability, however, retains a structural shape in its apparent embrace of dualism. It is along this fault line that the model has attracted most criticism.
I hope to demonstrate that the roots of the model have caused it to grow in this way. Early and influential writers considering deviance concentrated on physical nonconformity. By accepting such a corporeal and categorically based conception of disability, proponents of the social model relegate the issue of intellectual disability, which cannot be accommodated within a materialist framework.
In discussing the apparent failure of the social models to accommodate people with intellectual disabilities, I am tempted to regard the lack of cohesion as emanating solely from the social modelers themselves. Closer examination reveals that this is not necessarily the case. Chappell and Goodley are two prominent voices in the United Kingdom who have explored the seeming inadequacy suggested here. Although recognizing a “lack of fit,” they remarked (2001) that
the social model is often overlooked in research and writing about learning difficulty. While there are notable exceptions the majority of research has not attempted to explicitly use the social model as a tool for analysing the views and experiences of people with learning difficulties, nor invite people so labelled to inform the model. (p. 45)
In order to address this apparent deficit, Chappell and Goodley turned to self-advocacy and ethnographically generated life histories as a means by which a better approximation of lifestyle and learning might be made.
Kershaw's remarks (cited in Goodley, 2000), quoted above, highlight the potential depth of division between people who are physically impaired and those with intellectual disabilities. It is this division that the social model can either help to overcome or widen further. As things stand now, the differences are more apparent than the similarities, and these are reflected in the approaches to research in the two areas. It is well beyond my scope in this article to investigate the reasons for this, but readers can gain an appreciation of the tensions between emancipatory and participatory approaches from Chappell (2000) or Cocks and Cockram (1995).
The self-advocacy movement in the United Kingdom represents the political wing of the disability movement because it involves people with intellectual disabilities. Even here another duality is evident. Chappell, Goodley, and Lawthom (2001) rightly remarked that although the broad-based disability movement has fought off the “colonizers of disability” (referred to as the “medical and allied professions”), the disability movement as it directly involves people with intellectual disabilities had had another battle to fight, the battle to assert their humanity. From this comes the rallying cry, banner, and focal point of the movement: the right to be known as People First.
Ontology: The Nature of Disability
“The principle of difference is in fact the principle of meaning in linguistics: things mean by differing from each other” (Davis, 1995, p. xiii).
The ontological nature of disability revolves around issues of identity, and I want to argue that these are, to some extent, premised on measurement. This enables us to ask, Who is allowed to call themselves “disabled?” In attempting to answer this question, I introduce the notion of criteria.
It is noteworthy that some form of categorization/classification is inherent in any claim to group membership and that the whole notion is suffused with assumptions around rights and morality. According to Wendell (1996) some people call themselves “disabled” because their bodies “cause them problems” (p. 25), even if society or the medical profession does not agree. She goes on to suggest that within a social constructionist analysis, there are three components at work: the biological, the social, and the experiential (p. 35).
This position leads to an evaluation of disability as
socially constructed by such factors as social conditions that cause or fail to prevent damage to people's bodies; expectations of performance; the physical and social organization of societies on the basis of a young, non-disabled, ‘ideally shaped’, healthy adult male paradigm of citizens; the failure or unwillingness to create ability among citizens who do not fit the paradigm; and cultural representations, failures of representation, and expectations. (p. 45)
So, when Cooper (1997) asks, “Can a fat woman call herself disabled?” the answer is becoming more obvious. Wendell, at least, is clearly indicating a case for saying yes. What, then, are the implications for people with intellectual disabilities in a scheme where all categories of disability are catered for—where there is a place for everyone and everyone must take their place? How this is resolved will be the subject of the next section.
Barbie, the Social Model, and Vital Statistics
Barnes (1996), in an echo of Wendell's (1996) earlier remarks, claimed that “the oppression of disabled people can be traced back to the origins of western society and the material and cultural forces which created the myth of ‘bodily perfection’ or the able-bodied ‘ideal'” (p. 43). Stone (1995) took this further and, in so doing, made clear how such a view has implications for all of us:
This myth of bodily perfection encourages the definition of only a minority of the population as people with disabilities, and justifies treating them as ‘other’. This is oppressive, not just for those who are unproblematically recognized as people with disabilities, but ultimately for everyone, because it keeps all of us alienated from our bodies. It prevents us from acknowledging and accepting that all of us have limits to our abilities. (p. 416)
When Cooper (1997) posed her provocative question regarding whether a fat woman could call herself disabled, she followed this line of thinking and did so to forge links between two apparently disparate but marginalized groups within contemporary society. She also demonstrated a common ground in the social construction of their shared disability. However, Cooper is only allowed to frame the question in this way because it contains within its rhetorical shape implicit ideas of what fat and of what able currently mean. This meaning derives from their positions relative to not fat and dis-able. Both statements are contestable, mediated by popular culture and communication channels, and rely on contemporary social mores for relevance if not meaning. In other cultures, at other times, the question would simply not arise.
To establish deviance, for example, it is necessary to operationalize the norm. Fat and disabled are comparative forms. We cannot know them without a sense of corollary. The creation of what Davis (1995) termed normalcy was a 19th century project in which commentators of the day, such as Quetelet (1796–1847), took advantage of population measurement and economic theory to construct a notion of average, of mean, and of norm. As Davis noted, these particular words only took on these particular meanings in the middle of that century to describe the process of normalization, here understood as a type of conformity to an arithmetically calculated distribution (p. 24).
In order for normality to be calculated, society first had to have a working definition of normal— “the idea of a norm is less a condition of human nature than it is a feature of a certain kind of society” (Davis, 1995, p. 24), which is another way of saying that there is nothing intrinsic, or essential, about notions of deviance or beauty, for example, that evolve and change over time.
This reduction of the unattainable ideal to the achievable norm came about by the application of statistical averages to society. Quetelet (1842/1968) adapted the law of error, at that time the property of astronomers, to describe the average of the physical characteristics of the population in a new way. He further developed this idea to include morality, and his next step was the production of a “middle class” as one to which the general population should aspire.
Under the Bell Curve
Gauss' (1777–1855) bell curve of distribution is so universal in its application, it approaches absolute truth. Even the most rigorous idealist would have to yield to its descriptive power. Galton (1822–1911), however, saw it as an opportunity to promote his eugenicist views.
The Eugenic Education Society was founded by Sybil Gotto in 1907 “with the purpose of promoting those agencies under social control which might improve the human race” (Mazumdar, 1992, p. 1). As a prime mover within the organization, Galton was keen to promote his ideas on heredity. Galton first modified the name applied to the error curve to the now more recognizable normal distribution curve. There was then a gradual change in terminology, which resulted in the limits to normality being stretched by the calculation of standard deviation. Davis (1995) explained the significance of this:
What these revisions by Galton signify is an attempt to redefine the concept of the ‘ideal’ in relation to the general population. First, the idea of the application of a norm to the human body creates the idea of deviance or a ‘deviant’ body. Second, the idea of a norm pushes the normal variation of the body through a stricter template guiding the way the body ‘should’ be. Third, the revision of the ‘normal curve of distribution’ into quartiles, ranked order, and so on, creates a new kind of ‘ideal.’ This statistical ideal is unlike the classical ideal which contains no imperative to be ideal. The new ideal of ranked order is powered by the imperative of the norm, and then is supplemented by the notion of progress, human perfectibility, and the elimination of deviance, to create a dominating, hegemonic vision of what the human body should be. (pp. 34–35)
Thomas' (1999) remarks on impairment are pertinent at this juncture. She located impairment in
those body related variations which in Western culture have become markers of socially, or more precisely medically, defined ‘significant deviations from the normal type’ or ‘abnormalities.’ In the light of the previous argument we might ask whether our understanding of ‘difference’ is being organized around an appreciation of the statistical norm. If so then the way is cleared for the medicalization of disability with all its implicit notions of ‘treatment’, ‘cure’ and ‘rehabilitation’. (p. 24)
Under this disturbing view, even dress sizes appearing at either end of the distribution curve could be construed as deviant, and Cooper would have an answer to her question. For those whose measured intelligence occupied the left shores of the curve, some official recognition was due. Seguin (1866) was one of the first to recognize this with this description of an idiot: “he is a minor legally irresponsible; isolated, without associations; a soul shut up in imperfect organs, an innocent” (pp. 39–40).
However, the ranges of intelligence, when defined by IQ, offered more opportunity for ranking, and the classification was duly extended by Goddard (1866–1957) to include the moron alongside the already familiar imbecile and idiot. Any usefulness that such a system of categorization might have offered was immediately transcended by the implicit value system. Goddard's (1915) remarks made this clear when he said:
For many generations we have recognized and pitied the idiot. Of late we have recognized a higher type of defective, the moron, and have discovered that he is a burden; that he is a menace of society and civilization; that he is responsible to a large degree for many, if not all, of our social problems. (pp. 307–312)
This terminology was to prove useful to eugenic-inspired administrators in early 20th century England (see discussion below).
Language: The Definition Debate Revisited
Disability as deviance was a peculiarly 19th century creation, arising out of the Poor Law Reforms of 1834 and the burgeoning medicalization and subsequent professionalization of health and social care. If society in the late 19th and early 20th centuries categorized disability as a concept and segregated its constituents, then those in the late 20th century have seen something of a reaction to this in the way that activists within the movement have sought to restructure their experience.
Burr 's (1995) observation of language as “a site of struggle and conflict where power relations are acted out and contested” (p. 41) is apt. The ideological ramifications are seldom more apparent than in the exercise of labeling people with intellectual disabilities. When Hartsock (1985) observed that “the exercise of power involves the creation of ongoing relations of dominance” (p. 29), the direction in which the relationship flows is apparent. From this dynamic, again according to Hartsock, “Hierarchy, then, is inevitable” (p. 29). Humphrey (2000) later echoed this with her comments on “impaired identity.” It is in the creation of a hierarchy of disability that the dualism at the core of the social model paradigm invites the most serious criticism.
When Langness and Levine (1986) asserted that “mild mental retardation is as much or more a social and cultural phenomenon as it is a medical-genetic or cognitive-psychological one” (p. 191), they accepted the 19th century categories and replicated the structuralism that sifts and sorts those amenable to sociological research and those who are best left to medical intervention. If indeed, as Hartsock (1985) suggested, social exchange leads to the emergence of power differences, which in turn can lead to differentiation, then it seems fair to accept that these could lead to stratification, which in turn leads to the institutionalization of dominance. Concomitant to this process is a fostering of compliance and the creation of dependency that is typical of the social situation of many people with an intellectual disability. This is evident even in the terminology. To have become known as “service users” or “clients” is to be positioned as passive (Finkelstein, 1993, p. 13). Cast as recipients of care, it is difficult to resist the “hegemony of the normal” (Davis, 1995, p. 49) when the entire industry is configured towards this end (Albrecht, 1992).
The inevitability of unequal power relations within a dualistic interpretation of experience hinders the social models from gaining wider currency. The effective silencing of impairment (Humphrey, 2000, p. 66) is echoed by Paterson and Hughes (1999), who observed that “the problem of mind/body dualism is reproduced by the distinction between disability and impairment. The biological and cultural are pulled apart” (p. 329). The resistance offered to deconstruction by the social model prevents acceptance of and/both type thinking. Wendell (1996) supported this view when she said, “I maintain that the distinction between the biological reality of a disability and the social construction of a disability cannot be made sharply, because the biological and the social are interactive in creating disability” (p. 35).
Dualism, then, can be seen as creating more problems than it solves. A significant proportion of people have their contributions marginalized to the point where they may feel that to criticize or even complain about the social models is to deviate “from prevailing orthodoxies” (Humphrey, 2000, p. 68). What dualism does do, however, and it does this well, is to prioritize knowledge claims, hence, the suggestion that the power relations at work within disability theory have marginalized the knowledge and contribution of people with learning difficulties (Nunkoosing, 2000, p. 50). Through the conceptualization of the experience of disability in a binary fashion, the social model perspectives prioritize self-interest. This leads us to consider the production of knowledge within disability itself and, in particular, how this has been organized. It is useful at this point to heed Clegg (1993), who reminded us that “dismantling traditional barriers between types of knowledge is one of the tenets of social constructionism” (p. 390).
Epistemology: How Do We Know Anything About Disability?
“Knowledge is always from a perspective and for a purpose”—Reason (1998, p. 280).
The social model(s) of disability can be understood as epistemologies of a standpoint variety. This particular standpoint has come, almost by default, to represent the total experience of disability. There is some irony here. When Oliver stated that oppression is rooted in capitalism, he did so as a student of Marx (1996b). He would, therefore, have been aware that Marx (1970), on this occasion in company with Engels, warned that “the ideas of the ruling class are in every epoch the ruling ideas, i.e. the class which is the ruling material force of society, is at the same time its ruling intellectual force” (p. 64).
It can be argued that activist/authors who had disabilities (Oliver, Finkelstein, Barnes and others) provided a similar “ruling intellectual force.” They came to the academic party, understandably did not much care for what they saw, and in the intervening years effectively cornered the market in social model thinking.
Yet, when Hetherington and Munro (1997) asked, “Whose interests are being furthered or protected by seeing the world in this way, rather than that”? (p. 4), they drew our attention to the inevitability of what Becker (1967) called “partisanship.” No one group can escape the charge that they are, in effect, biased in their attempts to formulate their own experience. If, however, the offered perspective nevertheless becomes dominant, then proponents of other points of view will find it difficult to attract adherents. In this fashion the social models have quietly assumed a position of undue influence. As Liggett (1997) remarked, “Questions relating to how we know and what kinds of knowledge become institutionalized in established practices are of interest because knowledge, and the constitution of available identities, are connected to the operation of power in society” (p. 181).
So, until a credible alternative and complementary position is established, people with intellectual disabilities will remain as a subset of the larger population of people with disabilities. As such, any benefits that might accrue, whether from political platforms or economic alliances, will be diluted. The sheer diversity of the population of people with intellectual disabilities conspires against facile incorporation within broad conceptual maps.
Corker (1999) observed that the polarization of argument as it is presented in much disability theory re-creates division and in so doing “preserves hierarchical social organization instead of challenging the assumptions that underlay it” (p. 633). By adopting a poststructuralist perspective, it is possible to posit the disagreement between essentialist and nonessentialist arguments as themselves producing a further re-creation of binary thought. Fuss (1989) summarized the differences between the two by arguing that “reality operates as a more sophisticated form of essentialism” (p. xii).
Thomas (1999) approves this line of thought but warned against getting “trapped in the tramlines of modernist discourse” (p. 111), which leads one to believe that the “normal” can only be recognized when set alongside the “abnormal.” Proponents of a thoroughly poststructuralist view would reject this dichotomous perspective and seek out some system of representation that would incorporate both aspects of the binary. Of course, medicine will do this for you every time; and this in itself is a good enough reason for early proponents of the social model to reject the argument. As Crow (1996) observed, the totality of the experience of disability cannot be separated, except conceptually, into components labeled impairment and disability.
This returns us to some of the ideas discussed earlier and offers some clues to the nature of the contested identity that people labeled as having an intellectual disability must live with. Is intellectual disability inherent within the person or socially constructed? Or is there some middle position that allows for the experience of intellectual disability to be understood as an amalgam of both? To suggest that impairment and disability can be appreciated within one framework seems to be an advance on a position that separates them.
Within this dilemma people with intellectual disabilities remain adrift from the tides that drive theoretical work. This is despite the best efforts of researchers to “get it right” and include their voices (Knox, Mok, & Parmenter 2000; March, Steingold, Justice, & Mitchell, 1997; Minkes, Townsley, Weston, & Williams, 1995; Rodgers, 1999; Williams, 1999). What is inescapable is that many authors and commentators active within this field are making a contribution to the debate by proxy due to the intellectual disability of their colleagues. This has effectively rendered much of this population silent, and only more recently has the self-advocacy movement offered a voice.
The idea that there has been an organization of difference suggests that the distinction made between people with physical disabilities and people with intellectual disabilities was no mere chance event. The language used in providing definitions of the differing categories of disability had an ideological function that served to subjugate the condition created as intellectual disability.
The practical ramifications of this categorization were made manifest in the Mental Deficiency Act (1913). This legislation endorsed eugenic thinking and incarcerated thousands according to “scientific” criteria. Further, I have suggested that these distinctions were based originally on suspect reasoning in as far as the whole concept of what is statistically “normal” is indelibly marred by eugenicist designs. People with intellectual disabilities have been forever stigmatized as a result of this, particularly from an educational perspective, with the continued reliance on IQ as a standard and predictive measure.
To alleviate themselves from the oppression of an “ableist” society, people with physical disabilities undertook a social constructionist project that reconceptualized the whole notion of disability in their own image. However, within this perspective, the distinct epistemological and ontological position of people with learning difficulties became subsumed within the general framework of disability. Within this hierarchical arrangement, the criticisms leveled at a binary mode of thinking resurfaced. As Lather (1991) noted:
Dualisms which can continue to dominate western thought are inadequate for understanding a world of multiple causes and effects, interacting in complex and non linear ways, all of which are noted in a limitless array of historical and cultural specifications. (p. 21)
The continuing conundrum is what exactly would an alternative critical perspective look like? From an academic vantage point, the difficulty seems to be that the place of people with intellectual disabilities is forever slipping between the competing arguments. An account that is concentrated solely on impairment neglects the disabling conditions within society. An account that is focused on oppression and disability as a social construct neglects the issues of bodily impairment.
Whatever theoretical position is adopted, there is always a counter position. Consideration of people with intellectual disabilities as a minority group will preclude social inclusion. Empirically generated categorization will reinforce “otherness” and cement identity as a fixed condition. Discursive notions tend to favor social processes and power relations at the expense of personal agency.
Caught between these rocks and hard places, it might be worth recalling Wittgenstein's (1961) remarks. He clearly recognized the limitations of inquiry when he said, “When all possible scientific questions have been answered, the problems of life remain completely untouched” (pp. 6.52–6.522). To investigators in the social sciences, it is a worthwhile caution and should act as a spur to those who would make a meaningful contribution to the lived experience of people classified with an intellectual disability.
My argument has concentrated on divisions. However, such divisions can be useful because it is precisely at these points of intersection that debate emerges. This, then, is not an attempt at closure, but an invitation to more discussion. The differences and divisions suggested here may be more imagined than real, but it remains in the interests of all parties to negotiate, communicate, and join the debate. We must all be suitably reminded (again) that in any commentary on disability, the analysis must address the question of intellectual disability.
Author: Alex McClimens, BA, Research Student, School of Nursing & Midwifery, University of Sheffield, 301 Glossop Rd., Sheffield S10 2LH United Kingdom. A.McClimens@sheffield.ac.uk