Introduction
Disabled people are routinely stigmatised[1]. In the popular imagination, anatomical difference is something that ruins people's lives. To suggest otherwise seems to indicate either a complete lack of compassion, understanding or perhaps just an inability to empathise. Research published by the Department for Work & Pensions[2] has shown that non-disabled people strongly believe that being, or becoming, disabled has an extremely detrimental impact on the quality of a person’s life and identity. French & Swain have observed that,
“[i]n the personal tragedy theory, disability, or rather impairment - which is equated with disability - is thought to strike individuals at random, causing suffering and blighting lives”[3]
In short, disablement is thought to be a personal tragedy. The commonality of this view, however, ought not to be taken as an indication of its truth and incontrovertibility. Simply because many people believe disability to be a personal tragedy does not mean that it actually is a tragedy - personal or otherwise.
In recent decades opposition to the personal tragedy theory of disability has emerged both in academic circles and from among the ranks of disabled people themselves. This has spawned an academic discipline - Disability Studies - and has led, among other things, to a social model of disability being developed as an alternative to the standard conception of disability.
Below, I shall examine approaches that challenge the idea that disablement is just an unfortunate phenomenon of nature or a medical reality - approaches that see it, instead, as a form of social oppression. (In my next post, I will consider ideas that have emerged in recent years - in particular, from within the sociology of the body - which, in my view, complement the social model and raise questions about popular and medical understandings of disability[4].) If we are going to explore whether disablement is a tragic phenomenon, we will first need a clearer idea of what is meant by the term, “tragedy”.
Tragedy
“Tragedy” is variously defined, by the Online Cambridge Dictionary, as “a very sad […] situation, especially one involving death or suffering”[5] and, by the Oxford English Dictionary, as “drama, etc., of serious character, with a fatal or sad conclusion”. It implies not only disaster, catastrophe and misfortune of the worst kind, but also suggests that there is a fatalistic and irreversible quality inherent in that situation. The aforementioned research for the D.W.P. showed that people believed that disability reduces a person’s quality of life, that it causes a loss of independence, that it renders people dependent on others as well as being permanent and unchanging (see footnote 2). The supposedly irreversible nature of disablement is, however, a key point of contention among those who favour the social model of disability.
Despite increasing acceptance in recent years that disability is not, in itself, an irreversible personal catastrophe[6], it is still viewed by most people as the inescapable consequence of bodily “impairment”. The personal and tragic nature of disability is commonly taken as self-evident to the extent that,
“‘Disability’ is a commonplace term. Its meaning, at one level, is beguilingly obvious - not being able to do something. In lay terms, referring to people with impairments as disabled signals that they belong to that group of people who cannot engage in ‘normal’ activities because of their ‘abnormal’ bodily or intellectual ‘deficit’ or ‘incapacity’.”[7]
This popular conception of disablement as tragedy has, in recent times, been underlined by a glut of news stories about people who have opted to die[8] (or kill[9]) rather than continue living with “impairments”[10]. In a similar vein, a magazine article, published in 2008, entitled I Took Heroin Because Of My Disabled Baby[11], illustrates well the kind of reaction which is commonly associated with “impairment”. In the article, the story is told of a young mother whose maternal feelings toward her infant daughter are transformed when the child reaches the age of ten months and an apologetic medical practitioner informs her that her daughter has cerebral palsy. The mother imagines the miserably and inevitably restricted and unhappy future that the child - in her view - is destined to have:
“I felt my heart break. Molly would never skip to the park, or run away from lads playing kiss chase. She wouldn’t be able to dance at the school disco, or walk down the aisle at her wedding. My heart crumbled for her and all the things she’d miss out on.”[12]
The remainder of the magazine article consists of a description of the mother’s descent into drug addiction as a means of escape from her feelings of “hurt, regret and guilt” as somebody that had given birth to a child that is disabled. She goes on to recount how she had to contend with “the stares from strangers” when she took her daughter out in a wheelchair in public: “I was 18 but I felt middle-aged. In a way, my life was already over, swamped by Molly’s problems.”[13]
Disability as Personal Tragedy
According to the medical/tragedy model, disability is an entirely personal phenomenon, caused directly by physiological/intellectual abnormality. The World Health Organisation, for example, has formulated an International Classification of Impairments, Disabilities and Handicaps (I.C.I.D.H.) as follows,
“[i]mpairment is concerned with abnormalities in the structure or functioning of the body or its parts, disability with the performance of activities and handicap with the broader social and psychological consequences of living with impairment and disability”[14]
For medics and others who subscribe to this model, the difficulty in “doing things” [as Thomas (2003) puts it (see footnote 8)] which disabled people endure is directly attributable to bodily impairment, and the problems of engagement in everyday life arise as a natural - albeit unfortunate - extension of those difficulties. The difficulties that disabled people experience are commonly thought to be directly caused by their personal “deficiencies”. Their “impairments” are conceived as an impediment upon their ability to engage competently with their physical and social worlds. Being disabled, according to this view, implies a life that inevitably differs significantly from that of most people, a life bereft of those experiences that are, it is inferred, a necessary prerequisite to happiness and fulfillment.
Sociologist, Bill Hughes, has referred to this as the “corporealization of disability”[15] whereby the difficulties in doing things experienced by disabled people are traced back to their bodies. Academics working in the field of Disability Studies, however, assert that in the popular imagination, "impairment" is often conflated with disability, erroneously treating these separate phenomena as straightforwardly the same thing. They reject this model on the basis that it is - in their view - intellectually flawed. They argue that its fundamental failing is its biological determinism and its reliance on the axiomatic belief that disablement exists as a phenomenon of the individual.
The Social Bases of Disability
The Materialist Social Model of Disability
For those who object to the medical/tragedy model of disability, it is not that they do not recognise or acknowledge the daily hardships and difficulties of being disabled. Many of the critics are, themselves, disabled and therefore readily appreciate those hardships. They are motivated in their work, primarily, by a desire to eliminate them. Instead, they object to the medical model on the grounds that it is, in their view, society, rather than nature, that disables them. It is simply wrong, in their view, to believe that nature has given disabled people bodies and minds that are ill-equipped to cope with the world. Instead, they argue that the social and physical worlds are ongoingly constructed, organised and enacted with an idealised body in mind and it is this that disables people whose bodies deviate from that ideal.
The social model of disability emerged in embryonic form in the 1970s and was first publicised by the Union of the Physically Impaired Against Segregation (U.P.I.A.S.). They reformulated “impairment” and “disability” as follows:
“Impairment: lacking part of or all of a limb, or having a defective limb, organism or mechanism of the body.
Disability: the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities.”[16]
One of the key figures within Disability Studies, Michael Oliver, has emphasised the sociopolitical importance of reconceptualising disablement in this way:
“What is at stake here is the issue of causation, and whereas previous definitions where ultimately reducible to the individual and attributable to bodily pathology, the above definition locates the causes of disability squarely within society and social organisation.”[17]
How, then, is it that society disables people? In this essay, we will consider the ways in which “people with impairments” are said to be disadvantaged as a consequence of how particular societies have evolved, demonstrating that disablement does not simply and necessarily arise as a tragic consequence of bodily “difference”.
For the disability movement, disablement is a socially and historically contingent phenomenon that was produced by particular socioeconomic conditions. Activists and academics contend that disability is, primarily, a modern experience, largely peculiar to industrial capitalism. In Oliver’s The Politics of Disablement, for example, he demonstrates that the conception of disability as a personal tragedy is by no means a universal phenomenon[18]. In a brief overview of anthropological evidence, he shows that different cultures have generated varying understandings of bodily difference and that societal responses to those differences tend to derive from the explanations that are used to account for “impairment”. He notes that these responses can be accommodative in order to ensure the integration of the “impaired” person into the community. Such responses, he adds, are the result of the view that the “impairments” in question were “a problem of the community not for afflicted individuals”. On this basis, he points out that in some cultures, “impairment” is not even something that, it is felt, ought to be “treated” or “cured” and even cites an instance of medical intervention being actively rejected[19]. Furthermore, and in contrast to the conception of the disabled person in modern mainstream culture as a tragic figure, he notes that some “impairments” may even prompt deference to the “impaired” individual on the part of others and social opprobrium for those who are not sufficiently deferent.
In particular, though, to highlight the socially contingent nature of disablement, the disability movement has focused attention on the position of “people with impairments” in societies at earlier stages of social and economic evolution and asserted that it was the transition to industrial capitalism that is at the root of their being conceived as tragic and unfortunate. Some of the constitutive elements of capitalism have been said to generate disability, three of which are outlined below[20].
(i) Separation between domestic and economic activity
Prior to the emergence of industrial capitalism, there is said to have been little separation between work and home. Finkelstein notes that under the feudal system and early, small-scale capitalism, “people with impairments” would, like others, have been involved in agricultural labour and in the spinning and weaving of textiles for sale in the marketplace. He notes also that much of this work would have been performed in the home and that machinery, where it was used, “could have been easily adapted to suit individual physiques”. They would also have been occupied with domestic labour such as looking after children, cooking and making clothes, thereby making a direct and indirect economic contribution to the family unit[21].
Prior to the emergence of industrial capitalism, there is said to have been little separation between work and home. Finkelstein notes that under the feudal system and early, small-scale capitalism, “people with impairments” would, like others, have been involved in agricultural labour and in the spinning and weaving of textiles for sale in the marketplace. He notes also that much of this work would have been performed in the home and that machinery, where it was used, “could have been easily adapted to suit individual physiques”. They would also have been occupied with domestic labour such as looking after children, cooking and making clothes, thereby making a direct and indirect economic contribution to the family unit[21].
Whereas, under feudalism and early capitalism, “people with impairments” were an integral part of the community, able to contribute - in the home or on the land - to the subsistence of themselves and their families, the system of production as it developed under capitalism, required the concentration of economic activity in urbanised centres where workers were employed to operate machinery in an intensely pressurised environment. For “people with impairments” this process was alienating:
“[a]s far as disabled people were concerned, the speed of factory work, or working to the rhythms of machinery, often undertaking complex, dextrous tasks, the regimented discipline and production demands ‘… were a highly unfavourable change from the slower, more self-determined methods of work into which many handicapped [sic.] people had been integrated’.”[22]
(ii) The competition imperative
In addition to the disadvantage placed upon “people with impairments” by urbanisation and the mechanisation of the workplace, the emerging capitalist relations of production, it has been argued, fundamentally altered the relationship between people, in general, and the relationship between “people with impairments” and “the able-bodied”, most particularly. Underpinned by an ethos of individualism and competition, the ultimate aim of which was the production of the most desirable goods and services at the lowest prices - thereby, supposedly, maximising utility to both businesses and individuals - the market pitted business owners against those seeking profitable employment and potential employees against one another. Oliver describes how the material reality of industrial capitalism filtered into cultural beliefs about the nature of that reality:
“[t]he requirements of the capitalist system were for individuals to sell their labour in a free market and this necessitated a break from collectivist notions of work as the product of family and group involvement. It demanded nothing less than the ideological construction of the individual. […I]ndividuals always existed but only as part of larger social groupings whether they be families, clans or communities. It was only with the rise of capitalism that the isolated, private individual arrived on the historical stage.”[23]
Paraphrasing Marx & Engels, the transition to capitalism “left remaining no other nexus between man and man [sic.] than naked self-interest, than callous ‘cash payment’”. Thus the emerging capitalist class - overridingly driven by the principles of economic rationality - resolved to pursue the maximisation of profit margins by creating and locating places of employment and methods of work that, while intentionally suitable for most potential workers, were in most instances, distinctly inhospitable to “people with impairments”. In the new mode of production they were largely squeezed out of the labour market. Oliver sums up the situation:
“[t]here are [in an industrialised, ‘free market’ system], indeed, strong economic reasons for the exclusion of disabled people and it is the embodiment of these social and economic relations under capitalism which has led directly to the exclusion of disabled people within capitalist society.”[24]
(iii) Stigmatision and segregation
The separation of domestic and economic life and the creation of a labour market wherein socioeconomic status was no longer fixed led to the exclusion of “people with impairments” from the labour market by default. Estranged from the world of work, disabled people came to be identified as a burden on the community. Since they existed within an economic environment that had been cultivated without consideration of, or concern for, bodily difference and which, thereby, disabled them, “people with impairments” were prevented from supporting themselves and their families and they began to be viewed as a problem. The reconstitution of “people with impairments” as an economic and social “burden” gave rise to their separation of their lives from the wider social world and this separation, in time, developed into formal segregation.
Finkelstein describes the period during which capitalism was developing as “the ‘institutional phase’ in the history of disability”[25]. It is at this point in the history of British society that disabled people came to be assigned the status of “deserving cripples”[26]. Having been transformed into a kind of “surplus population”[27] by the workings of the capitalist labour market, disabled people became a “problem” since they now had no means of subsistence and gradually came to be viewed as an economic burden on their families. The solution to this problem was their consignment to what Finkelstein characterises as “custodial institutions”[28] where they could receive “care” and “protection” from the inhospitable socioeconomic environment of industrial capitalism.
During this “institutional phase”, biomedicine was emerging as a dominant intellectual discipline and the cultural representation of disabled people arguably came to be most authoritatively and thoroughly articulated through biomedical discourse. Far from being simply or exclusively a benign facilitator of health and personal wellbeing, however, medical researchers and practitioners - in the eyes of the disability movement and other social theorists - have served as oppressors of “people with impairments”, because of their treatment of disablement, as a purely corporeal phenomenon.
Although not specifically focused on the circumstances of people experiencing disablement, the ideas of Michel Foucault dovetail with the work of Disability Studies’ academics. For Foucault, the field of medical science is a discourse which functions as a “dividing practice”[29] and enables particular people to be identified and categorised as deviant and abnormal. From a Foucauldian perspective, medicine encourages the view that the absence of “impairment” is the normal and desirable state for the average human being. It serves to propagate and impose a kind of “ideology of normality” (see footnote 20); it permits the rendering of particular bodily differences as “impairments” and it encourages the belief that these bodily differences require the attention of, and intervention by, “experts” in expectation of their being “corrected” or erased. While the separation of “people with impairments” from the economic sphere became a fact of life, their enforced segregation from the community and sequestration into residential institutions became the normal procedure because it had been rationalised and justified by the medical profession as “treatment” and/or “care”.
In short, the industrial and bourgeois revolutions of the eighteenth century are said to have been revolutionary not only to the economy but to social life in general. For “people with impairments” the consequences of this revolutionary transition were - according to many in the disability movement - harmful to their status and to their lives.
Returning directly to the issue of whether disability is a “personal tragedy”, the key point to be borne in mind here is that the social and physical environment from which “people with impairments” were being progressively more excluded was not naturally given. It was - and continues to be - a social and physical environment deliberately constructed, enacted and rationally calculated by human beings to be the most expedient means of protecting and advancing economic interests, seemingly without regard to the harm caused to people who were anatomically different from the majority population. Viewed from this perspective, disablement is seen as a consequence of the way that society is organised, instead of a natural outcome of “impairment”. The circumstances of the disabled person can, from this perspective, be said to be neither inevitable nor irreversible and social modellists argue that since disablement is fundamentally a social (rather than personal or natural) phenomenon, it is, therefore, amenable to social and political remedies. The position is summed up neatly by disabled academic, Tom Shakespeare, who argues that “[i]f disability is created by society then society can equally uncreate it”[30].
Weaknesses of the Materialist Social Model of Disability
Although the original social model serves as an important critical evaluation of the traditional explanation of what disability is and what causes it, it is important to recognise that it has shortcomings of its own. Whilst the work of Oliver, Finkelstein, Barnes and many others functions as both a polemical, academic critique and a timely political challenge to the dominant account of disability, the original social model is not, itself, without limitations.
There are three broad areas where the social model, as it was originally outlined, is open to question; I will touch upon them briefly here. Firstly, it can be challenged on the basis of its approach to history; secondly, it can be challenged because it pays insufficient attention to the role of culture in the creation of disability and; thirdly, it can be challenged on the basis that it purposefully disregards, almost completely, the embodied experience of disability.
The historian, Anne Borsay - while broadly sympathetic to the objectives of the disability movement - has criticised the social model because it is based, she argues, on a “nomothetic” approach to history[31]. The essence of this criticism, in plain terms, is that historical accounts such as those of Finkelstein and Oliver tend to simplify history into clearly demarcated periods of time that can be differentiated on the basis of defining social characteristics. The difficulty with this approach is that, while it affords a convenient analytical vantage point from which to view historical events, it does not necessarily provide a wholly valid picture. The nomothetic approach tends to focus on those aspects of historical periods that fit into a preconceived schema and overlooks those aspects that run contrary to the depiction of history that the writer wants to give. In short, nomothetic versions of history are not “grounded theory”[32]. While this does not mean that the social modellists’ arguments should be dismissed per se, it does mean that a reflective reading of their ideas is required.
The second key difficulty for the original social model derives from its theoretical basis in materialism. Taking inspiration from classical Marxism, those who developed the original social model of disability argue that the culture of a society derives from its economic base. Culture, in turn, is said to ideologically underpin and morally legitimate that base. As we have seen, therefore, capitalism is said to have given rise to the cultural devaluation of disabled people. This is problematic, however, since the pre-capitalist environment was not entirely hospitable to people who were anatomically different either. Such people had, for centuries, been marked out in the mainstream imagination as deviant and as lesser forms of being. Their identification as such began long before the industrial revolution. Religions such as Christianity and Judaism had already portrayed “people with impairments” as “changelings” - the spawn of witchcraft and sorcery - and had designated them as poor unfortunates who required for their survival and welfare the pity, sympathy and charity of others[33]. Similarly, the original social model holds that it was the onset of the capitalist economic system that gave rise to social and economic individualism (see footnote 24) and, in turn, to the disablement of people through their gradual exclusion from the community and the world of work. Others, however, have argued that the reverse was actually the case and that, in fact, it was the norms of individualism, the logic of self-interest and the ethos of economic rationality that brought about the capitalist mode of production, rather than vice versa[34]. This casts doubt on the original social modellists’ idea that pre-capitalist communities were always more generously disposed toward those who were anatomically different to the majority population. If it is, indeed, true that industrialised capitalist production actually emerged because of changes in prevailing culture (rather than culture having been changed by a transformation of the economic life of society), then this has implications about what can, or should, be done to eliminate disability from society. The materialist position adopted by the original social modellists seems to suggest that the only way that disability can be eliminated is through a transformation of socioeconomic life, toward a more communally based, post-capitalist type of society. If, however, it is cultural forces that control the nature of economic life, instead of the mode of production controlling the prevailing ideas of any age, then it may be possible to eliminate disablement by effecting a change in our culture.
The third and, in my view, most profound challenge to the social modellists’ original argument about the roots of disablement relates to their apparent determination to ignore the human body at all costs and - more particularly - to entirely disregard anatomical difference. Mike Oliver, for example, notes that, “the social model has insisted that there is no causal relationship between impairment and disability,”[35] and has asserted that “disablement is nothing to do with the body”[36]. The conscious decision to ignore the body has been explained as both a position of principle and a politically pragmatic strategy[37]. It is important to appreciate, however, that despite the disability movement’s pioneering work, many people still experience disablement as a phenomenon that is inherently related to their respective bodies[38].
A detailed discussion of this very significant issue is beyond the scope of this essay, but it warrants, at least, a little elaboration here. Despite the original social modellists’ objections, there are good reasons for redirecting attention back onto the body. Most notably - and in contradistinction to the message being advocated in the original social model - a convincing case can be made to the effect that the body is integral to disabled people’s lives, circumstances and sense of self. Crucially, it must be acknowledged that the majority of disabled people in the U.K. were not born with “impairments”. As Bury has noted, the majority of people experiencing disablement become “impaired” - most often as a result of chronic illnesses associated with old age[39]. We might reasonably assume that the majority of these people, not having previously been disabled, will have spent years, or possibly decades, building up an extensive “bodily repertoire”[40] with which to interact easily with their sociophysical environment. Whereas, for the majority of people in contemporary society, their physicality does not occupy much of their thinking in everyday life, it seems reasonable to suggest that for those who are - or who become - “impaired”, even the most trivial and quotidian details of life are likely to be reframed through a kind of somatic consciousness. Relatedly, Williams argues that, for the disabled person, life becomes dys-embodied. He refers to the “dys-appearing body” to describe the process whereby - in a negative sense - “the body becomes a central aspect of experience”[41]. This transformation into somatic consciousness has also been highlighted elsewhere. Ann Oakley, for example, reflecting on her own experience of physical injury, points out that,
“[c]orporeal existence dominates everyday life […]. But there’s a paradox inherent in this: while the body is the most abiding presence in our lives, the main feature of this presence is actually absence. Indeed, one definition of health is not to feel one’s body […]. It takes accidents, illness, ageing, childbearing or some other disruption of our unconsciousness of the body to make us aware of our dependence on bodily integrity”[42]
Mirroring this observation, Lupton remarks that,
“[w]hen pain, sickness or discomfort is not felt, one’s body is relatively unobtrusive. It is often not until illness or pain is experienced that the body comes into conscious being; illness may be conceptualized as the body taking over, as an external environment separate to the self.” (Emphasis added.)[43]
This suggests that, experientially, the lives of many people who are disabled qualitatively differ from the lives of those who are not and it suggests, moreover, that this difference originates in, and is imposed by the body, rather than the sociophysical environment. When - because of illness or “impairment” - the embodied character of everyday life dys-appears, this newly emerging body consciousness is unlikely to be welcome. Whereas, most of the time, the body is taken for granted and rarely noticed as the medium through which every aspect of life is lived, when it “malfunctions” it can intrude into every detail of every daily routine. Nowhere is this more apparent than in the case of Havi Carel, a philosopher whose 2008 book, Illness: The Cry of the Flesh, describes in poignant detail the transformation that took place, both, in her life and in her consciousness - arising from the onset of a rare form of lung disease, lymphangioleiomyomatosis (LAM)[44].
Carel explains that she came to feel increasingly alienated from her body as the symptoms of her illness progressed[45]. Reflecting on her increasing disablement, she says she came, “to gradually realise that as your body loses capacity your world shrinks too”[46] and goes on to reiterate that point later in the book, with the observation that, “[s]eeing your capacities diminish, your world becoming smaller and harder to negotiate, is never easy”[47]. Four years on from her diagnosis, Havi Carel laments the loss of the life she had previously led, saying, “my mind still races in its desire for freedom, for joyful movement, for physical abandon”[48]. Notwithstanding Mike Oliver’s claim that medical and rehabilitative intervention is an unwelcome imposition on the part of medical practitioners (see footnote 20), Carel's account is somewhat at odds with the way that the disability movement portrays the experience of disablement.
Undoubtedly, those who subscribe exclusively to the materialist social model would counter all of the above on the grounds that such matters, “properly belong within either the individual [i.e. medical] model of disability or a social model of impairment”[49]. Indeed, Vasey has - questionably and unhelpfully, in my view - asserted that, “[i]f a person's physical pain is the reason they are unhappy then there is nothing the disability movement can do about it”[50]. This, however, fails to accommodate the experience of many disabled people and fails to pay due regard to the myriad ways in which anatomical difference and the experience of bodily “malfunction” are directly implicated in the ongoing generation of disabling society.
So where does all of this leave the question of whether disability is a "tragedy"? The materialist social model has helped to undermine the idea that disablement is an inescapable consequence of bodily difference, but it fails to successfully address some of the most significant matters that impinge on the lives of disabled people. In my next post, I hope to build on the accomplishments of the social model, attempting to integrate it with other sociologists' attempts to appreciate the human body and its role in social life.
[1] The usage of the term “stigma” and its derivatives in this essay is based on the account of it given by Erving Goffman (1963a). He states that the stigmatised person is one who, possesses “an attribute that makes him [sic.] different.” More than that though, the stigmatised person is one who, “is reduced in our minds from a whole or usual person to a tainted, discounted one” (emphasis added) (p.12). Howson (2004) states that the term “stigma” “applies to a condition or attribute that symbolically marks the bearer as someone ‘culturally unacceptable’ or inferior” (p.23).
[4] It should be noted that although writers working within the field of Disability Studies have as a primary concern the alleviation of difficulties experienced by disabled people, others whose work is referred to below have dealt with the human body more generally and do not approach their work with the intention of acting as advocates of the “rights of disabled people”. Though there remains an ongoing disagreement between scholars on either side of this academic divide (see, for example, the critique of work done within medical sociology and the sociology of the body by Carol Thomas in Barnes et al. (eds.): pp. 43-46], the contributions of both are insightful and, taken together, pose a significant threat to the dominance of the individualistic conception of disablement.
[5] Online Cambridge English Dictionary: http://dictionary.cambridge.org/define.asp?key=84311&dict=CALD
[6] The social model of disability has been accepted and used in recent years even in the highest offices of government; see, for example, the publication, Improving the life chances of disabled people, produced by the Prime Minister’s Strategy Unit (2005): p.8.
[8] B.B.C. (10/11/2008): in September 2008, a 26-year-old man who had been paralysed from the chest down following a sporting accident, and after several suicide attempts, traveled to Switzerland for an “assisted suicide”. He was said by his parents to be "an intelligent young man of sound mind" who was "not prepared to live what he felt was a second-class existence". B.B.C. News (17/11/2008): euthanasia seems to be an increasingly attractive option for disabled people; the number of people registering with the Swiss organisation Dignitas now stands at seven hundred and twenty-five. B.B.C. News (29/10/2008): a high court ruling was given in connection with a high-profile case where a woman with multiple sclerosis was seeking clarification of the law regarding her husband’s legal position if he were to facilitate her suicide.
[9] B.B.C. News (23/09/2008): a woman was convicted of murdering her ten-year-old daughter who had “mild cerebral palsy” by drowning her in the bath, according the trial judge, “because [she] could not cope with her disability.” Commenting on the case, the charity Scope observed that the murder was, in part, a result of, “how society continues to portray disability in a negative light, creating shame and stigma around impairment”.
[10] The terms “impair”, “impaired” and “impairment” are used in this essay with reluctance and some degree of hesitation since they imply the devaluation of anatomical difference. Surprisingly, however, they continue to be used by disabled academics and “activists” who have seem to have overlooked or ignored the implications of these terms. In normal usage, they denote that which is flawed, faulty or weak. Throughout this essay these words will be placed inside quotation marks to indicate their contestable & contested nature.
[19] It is worth noting that Oliver (who, personally, has been disabled since sustaining a spinal injury in the 1960s) delivered an Inaugural Professorial Lecture at the University of Greenwich, in 1993, entitled What’s So Wonderful About Walking? in which he derided the attempts of the medical professions to “rehabilitate” people who cannot walk as the unwelcome imposition of an “ideology of normality” (pp.14-15) by a powerful medical profession, the aim of which is - in his view - the elimination from society of “people with impairments”.
[20] Since it is not my purpose here to give a historical account of the position of “people with impairments” but to examine whether disability is an inevitable and tragic outcome of “impairment”, I deal with these matters only briefly here. A fuller account of the argument that disablement is historically and culturally specific to the epoch of capitalism, industrialisation and medicine can be found in Oliver, M. (1990): 27-59, Finkelstein, V. (1980), (1981) and Barnes et al.: pp.18-20.
[26] Riddell, S. & Watson, N. (eds.)(2003): p.44. The expression “deserving cripples” is used by a disabled interviewee to capture the way that, in his view, disabled people are conceived as helpless and, necessarily, the recipients of charity to compensate for their “hardship”, in place of the opportunity to be self-supporting.
[33] Barnes, C. et al. (1999): pp. 17-18; Saraga., E. (1998): pp. 59-60. [Indeed, even Mike Oliver (1990: 27) concedes that “people with impairments” were viewed in pre-capitalist, pre-industrial society as “individually unfortunate”.
[37] Thomas, C. (2007): pp.121-122. Firstly, it was felt that it would be extremely difficult to forge a sense of solidarity among a population of people whose “impairments” were diverse. Hoping to make common cause among disabled people, the U.P.I.A.S. and wider disability movement chose, instead, to try to focus attention on problems to which all disabled people were said to be subject. Secondly, to dwell on the “malfunctioning” body was seen as a diversion of attention away from the external, structurally disadvantageous conditions that were imposed on “people with impairments” and to perpetuate the idea that the problems experienced by disabled people arose out of the disabled person’s body. In short, any further concentration on the disabled person’s body was deemed to concede ground to the medical profession and to give credence to the biological determinism that had / has, for so long, informed the received wisdom about the causes of disability. [See, also, Barnes et al. (1999): p.91-93 and Oliver, M. (1996).]
[38] Accounts of disablement which locate any aspect of disablement in anatomical difference are largely dismissed by academics within disability studies as, at best, a kind of false consciousness and, typically, the work of medics and social scientists comes in for this kind of criticism. Oliver, for example, argues that, “research by able-bodied researchers has served disabled people badly”, asserting that alternative accounts of disability are, “inaccurate, distorting and at times, downright oppressive”. Similarly critical of putatively meddlesome non-disabled academics, Barnes [in Swain, J. (2004): 28] has argued that,“[b]efore the 1980s, academic interest in disability within the social sciences was confined almost exclusively to conventional individualistic explanations linked in one way or another to medicine and medical concerns.” He proceeds to argue that the empirical and theoretical work done by non-disabled social scientists contributes to and reinforces the popular view of disabled people as tragic figures. He argues, furthermore, that such work encouraged the view that disabled people should submit to the oppressive authority of the medical profession and should, “[…] view their current [“impaired”] status as unacceptable. To this end they are expected to seek help from those charged with the responsibility for fulfilling this task: namely, medical and rehabilitation professionals” (Ibid.: 28).
Some academics have countered that the disability movement does not speak for all disabled people. While those at the forefront of the disability movement have, arguably, presented themselves as if they were a kind of “intellectual vanguard” of disabled people, it has been argued that the original, materialist social model does not necessarily resonate with the views of disabled people and cannot - at least, in its original, materialist form - alleviate the problems that they experience. The medical sociologist, Mike Bury, for example, has contended that disabled people cannot be understood simply as a homogenous group whose experiences and difficulties are identical. He argues, therefore, that the disability movement’s wholesale critique of the medical model does not serve all disabled people equally well [See Saraga, E. (1998): pp.84-85]. He points out that the social model derives, in large part, from reflections on the first-hand experience of disability activists, and that those reflections are shaped by the nature of their own “impairments”. He goes on to argue that, on one hand, many who are vocal in the disability movement are comparatively young and have “impairments” that are unchanging (perhaps congenital or the consequence of traumatic injury) whereas, on the other hand, many disabled people are older and have gradually become “impaired” through the development of chronic illness. Bury points out that the “impairments” of the people in the latter category are prone to fluctuations in degree and are often progressive in nature and do, therefore, require the expertise, services, facilities and support provided by the medical professions. According to Hughes (Ibid.: pp.84-85),
“‘Bury argues that social oppression’ theory thus tends to act as an ideological underpinning of the activities of younger (mostly middle class) people with […] non-chronic, relatively stable though perhaps severe forms of disability [… and] contends that their interests may be poorly served by ideas such as ‘disability is a form of social oppression’.”
[44] Carel, H. (2008): In consequence of rapidly diminishing lung capacity, Carel notes how “a new life descended upon me” (p.6) and states: “I had to reinvent my life” (p.7). She describes the difficulty she began to experience in activities that previously would have been performed without any prior thought. Everyday activities like walking uphill, climbing stairs, running to answer the telephone, carrying heavy objects and even walking and talking simultaneously caused her to be breathless and to experience chest pain.
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