The shift from symbolic understandings of disability to medical conceptualisations that saw it as a pathology to be prevented or cured seemed to have taken root at the beginning of the seventeenth century and seemed to represent “a significant step forward” when it occurred (Connor & Valle, 2015, p. 1105). Indeed, Connor and Valle (2015, p. 1105) acknowledge that technology, science and medicine made “many positive contributions” to the amelioration of disability and its symptoms. However, they also point to the “dark and cautionary history” of people with disabilities “at the hands of science” (Connor & Valle, 2015, p.1105). Nowhere was this history more disturbing than in its relationship with the eugenics movement of the late nineteenth and early twentieth centuries.
Connor and Valle (2015) outline the importance of Lennard Davis’ seminal work Enforcing Normalcy (Davis, 1995) in linking the “birth of statistics” to the “mathematization [sic] of the human body and mind” (Connor and Valle, 2015, p. 1113). Davis subsequently updated his ideas in the introduction to his The Disability Studies Reader (Davis, 2017). In
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this later work, he reminds us that we live in a world of ubiquitous norms relating what the average person does, thinks, buys, and earns. Thus, we have a tendency to “rank our intelligence, our cholesterol, weight, height, sex drive, bodily dimensions along some conceptual line” or standard distribution (Davis, 2017, p. 1) making us oblivious to the fact that the norm is not actually a natural phenomenon at all, but a technology (Foucault, 1980), a configuration of difference (Davis, 2017) that emerged as significant within a particular moment in history. For Davis (2017), developing an understanding of how normalcy was constructed is the key to understanding the construction of the abled and disabled body.
Davis (2017, p. 2) begins by reminding us that the word normal only came into use in the English language around 1840, to denote the idea of “constituting, conforming to, not deviating from a common standard, regular, usual”. Terms such as normality and normalcy appeared shortly afterwards in 1849 and 1857 respectively, as the new idea of the norm began to take root (Davis, 2017). These terms began to supersede those associated with the ideal human body used since the seventeenth century (Davis, 2017). While the ideal body was one of mythical, even godlike proportions that could not, by definition, be achieved by normal human beings the normal body and mind was something completely different. In similar terms, Davis (2017) points out that the word average does not enter European culture until the nineteenth century, with the work of the French statistician Adolphe Quetelet, who borrowed it from astronomy where it was used to work out the probable future position of celestial objects. Quetelet however, applied it to human characteristics and in the process created the notion of the “l’homme moyen” (Davis, 2017, p. 3), an abstract amalgam that epitomised all the qualities of the average person. This concept was substituted for that of the ideal human specimen used to that point (Davis, 2017). However, unlike the idea of the ideal human specimen, the notion of the average person imbued individuals with a non-ideal status to which most people could aspire. Thus, for Davis (2017 p.3) began the “hegemony of the middle”, where deviation from the norm meant separation from the majority or
othering.
Interestingly, Davis (2017) points out that almost all of the early statisticians were major figures within the “eugenics” movement. These included Sir Francis Galton who, in 1883, combined the Greek words for well and born to coin this term (Winzer & Mazurek, 2014). This was chosen with a view to focussing the movement on improving the genetic stock of the human species by diminishing occurrences of deviation from the newly hypothesised norm. Statistics were a key tool in the task, providing data to convince the state to consider some populations standard and others non-standard and lesser. Thus, it was the eugenics movement that “determined the content of Galton’s statistical theory” (Davis, 2017, p. 4), not vice versa. Galton began to refer to what had been known in
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astronomy as the error curve or normal distribution. However, in terms of human beings, this curve presented a problem to Galton; deviation above or below the mean was presented in precisely the same way. For traits considered desirable by Galton, such as height and intelligence, this was not convenient. He wanted to avoid middling such traits so he substituted the concept of average with the concept of the ranking and changed the way society looked at the curve altogether. Reclassifying undesirable deviations from the mean into a highly desirable ranking, Galton laid the foundation for development of a “hegemonic vision of what the human body should be” and gave birth to IQ and scholastic testing (Davis, 2017, p. 6).
Galton was highly influenced by ideas of natural selection developed by his cousin, Charles Darwin. As Davis (2017, p. 4) reminds us, “[e]ugenics was in reality applied biology based on … the Darwinian theory of evolution”. Together these ideas offered an apparently objective scientific basis for the wilful neglect of people who deviated unfavourably from an aggregated standard and who were deemed to possess characteristics that society did not wish to proliferate. Disabled people loomed large in such judgements. Davis (2017) notes that Galton’s links in the 1880s with the radical eugenic ideas of Alexander Graham Bell set the tone of disability discourse for the nineteenth and early twentieth centuries. Eugenicists began to group together all types of human variation they deemed undesirable. Kevles (1995) demonstrated convincingly how eugenic thinking became mainstream within official circles, such as through the establishment of an official UK Eugenics Office, which asserted that the view that the only way to keep a nation strong was to ensure that each new
generation derived from the fittest members of the previous one. For Davis (2017, p. 7), language such as this played “into the metaphor of the fit body” implying that, if “individuals are not fit, if they do not fit into the nation, then the national body will not be fit.”
Davis (2017) asserts that eugenics thinking gained ascendancy because it sat well with the capitalist imperatives of the time, to create a homogeneous, capable, flexible and productive workforce. He points to its uptake within laws, social policies and institutional practices in many western countries during the 1920s and 1930s. He suggests that Adolf Hitler simply restated many of the ideas of Galton, Bell and others, to assert in Mein Kampf that the State “must proclaim as unfit for procreation all those who are afflicted with some visible hereditary disease … and practical measures must be adopted to have such people rendered sterile” (Blacker, 1952 p. 144). Davis (2017) also argues that Germany saw itself as coming quite late to eugenics, and that part of its zeal in this area was due to the fact that it wished to demonstrate to other nations that they were equally devoted to its principles. It was in this spirit that the Nazi T-4 programme began the sterilisation and liquidation of those deemed to be disabled. As part of this programme, Nazi agents systematically gassed
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disabled people in institutional settings, pretending that they were entering shower rooms. Their bodies were then cremated. The knowledge and procedures developed provided a blueprint for the mass murder of both disabled and able-bodied Europeans in subsequent years, including Jewish, Romani and homosexual individuals, political dissenters and anyone whose existence was deemed undesirable by the Nazi elite (Davis, 2017).
Connor and Valle (2015, pp. 1107) make a convincing case that eugenic ideas, predicated on essentialist beliefs about difference, are still in evidence within debates about the use of modern bio technologies, such as those used to the detect of foetal abnormalities. They argue that scientific methods, “adept public rhetoric” and genome research, have “thrust upon parents” the responsibility for choosing whether or not pregnancies should continue and that such decisions constitute a form of eugenics (Connor and Valle, 2015, pp. 1107-1108). Davis (2017) has also expresses concern that foetuses may be aborted on the grounds that they may not be normal, perfect or fit or that, once born they will experience undue pain and suffering. Connor and Valle (2015) have proposed that, in deciding whether or not to continue the pregnancies of children with Down Syndrome, families can be
construed as bringing the consequences associated with the condition upon themselves (and on society) once a child is born. Conversely, aborting foetuses on the grounds that children are likely to be born with a disability may deepen the stigma attached to those already living with such conditions. Issues such as these are contentious and likely to remain so into the future (Connor & Valle, 2015). It is likely that essentialist perspectives will
continue to play a role in their discussion.
Davis (2017, p. 14) reminds us that the hegemony of normalcy has profound implications that “extend into the very heart of cultural production”. In order to assert itself, the hegemony of normalcy must remain constantly vigilant in “creating and bolstering its image by processing, comparing, constructing, deconstructing images of normalcy and the abnormal” (Davis, 1997 p. 23). Davis argues that cultural products such as art and literature act as “proliferator[s] of ideology” (Davis, 2017, p. 14), translating physical and cognitive differences into ideological ones. Representations of people with disability, and the events in which they play a part, are always marked with ideological meaning that inscribe our thinking in relation to normal and abnormal. Disability is also reified in commonly-used metaphors such as like a deaf man, beliefs that cripple you, blind allegiance, and crippled economy. Even Freud’s psychoanalysis produced a kind of eugenics of the mind, that reified normal sexuality and normal mental functioning, and contrasted these with what was variously depicted as perverse, abnormal, pathological, neurotic, and even criminal functioning (Davis, 2017). For (Davis, 2017 p. 1), the key to countering the oppressive effects of this idea, was the development of a “disabilities-studies consciousness” (Davis, 2017, p. 1).
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At that same time as the concept of the standard distribution was being developed, this became conflated with theories being developed that postulated normal trajectories and time frames for human development. These sought to describe the expected developmental trajectories of bodies and minds, and the parameters thought to be acceptable for this
development (Graham & Slee, 2008). Thus, the idea that human qualities are distributed in a standard way and develop along predictable paths, came to dominate thinking and practice around education at the expense, for example, of ideas that posit human diversity as a naturally occurring phenomenon that strengthens all living systems (Winzer & Mazurek, 2014). Ideas about normal human development led to the expenditure of huge amounts of time and money on attempting to describe how certain individuals’ physical, cognitive, social or emotional functioning, deviated from expected trajectories for this.
While such descriptions satisfied systemic demands of legal, medical, educational and other fields that required definitions of disability that set these out in quantitative terms, (see for example, Government of Ireland 1993, 2004, 2005; DES 2005), they also allowed the development of technologies (Foucault, 1980) that operationalised positivist views of disability, technologies such as psychometric and medical testing. As Skrtic (1995) demonstrated convincingly, the power to use these technologies was invested in professional groups who thus assumed “the authority to interpret normality … [and] the power to define and classify others as abnormal and to treat their bodies and minds” (Skrtic, 1995, p. 41). They began to stratify human beings according to various binaries;
normal/abnormal, impaired/non-impaired and able-bodied/disabled, on the basis of
apparently objective assessment. This was not simply a matter of scoring at a particular level on a standardised or diagnostic test. Ultimately, disability became a matter of professional judgement (Kauffman, Hallahan, Pullen, & Badar, 2018), which followed “investigation” with “surveillance and treatment”, often using “practices of medicalization [sic], objectification, confinement, and exclusion” (Biklen, Orsati, & Bacon, 2014, p. 352). Moreover, these
technologies often resulted in those deemed to be disabled being “infantilised, assembled as helpless and fashioned as asexual’’ (Bhabha in Goodley, 2016, p. 19).
A key element of this approach involved focusing exclusively on individuals’ limitations or impairments and treating these as problems to be solved. Thus, the focus of remediation or normalisation became the individual, not the conditions that contributed to the expression of their disability. The fact that people with disabilities may never be able to operate within the normal range of human functioning, in some areas, demarked them personally incurable or impervious to treatment. They were routinely assigned the “sick role” (Parsons, 1951, pp. 455-456), even where they were not sick. This exempted them from performance of certain of what were considered normal social obligations, such as going to
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school, securing employment and taking on responsibilities associated with family and community membership (Parsons, 1951). They were also exempted from responsibility for their own state (Parsons, 1951), as long as they accepted the help of professionals working mostly within medical model understandings of difference (Retief & Letšosa, 2018).
Positivist beliefs have also found their way into more recent conceptualisations of disability, such as those emanating from the critical realist perspective (Anastasiou & Kauffman, 2011, 2012, 2013; Barnes, 2007; Kristiansen, Vehmas, & Shakespeare, 2008; Shakespeare, 2006; Shakespeare & Watson, 2001; Vehmas & Shakespeare, 2014). Many recent theories stress the importance of maintaining a central focus on embodied and visceral aspects of the disability experience (Shakespeare & Watson, 2001, p. 24).
Despite the fact that positivist explanations of disability have been stridently criticised in recent years, especially in academic and activist circles, they continue to exercise a huge influence on many fields of practice, including education (Baglieri, 2017; Florian, 2014; Graham & Slee, 2008; Riddell & Watson, 2014; Thomas & Loxley, 2007). Chapter 3 will argue that within mainstream, special and inclusive education, positivist thinking continues to allow sway with practitioners and policy-makers, who continue to conceptualise disabilities as observable and intrinsic restrictions in the capacity of individuals to perform in certain physical, cognitive, social and emotional ways, relative to what is typical of those without such restrictions (Anastasiou & Kauffman, 2011, 2012, 2013; Vehmas, 2008). It will assert that these social actors continue to view disabilities as real and objective phenomena that exist “independently of any perceiver or mental state” (Vehmas, 2008 p. 22); an
individualised phenomenon for which objective criteria can be established and appropriate systems of assessment, identification and treatment devised. Such a view presumes that individuals have some innate and universal quality or essence that allows them to be ascribed, in seemingly unproblematic ways, to particular categories of difference (Slee, 1997; Thomas and Loxley, 2007). It is this notion that gives the essentialist perspective its name. Essentialism emphasises the quantification and, where possible, the treatment, accommodation or eradication of human difference (Gallagher, 2007). Perhaps the most salient, sustained and coherent critique of the perspective emanated from the development of the social and minority models of disability.