Disability scholars such as Michael Oliver (1990) and Vic Finkelstein (1981) trace the roots of disability as a social problem back to the rise of capitalist economy. According to their interpretation, in the period before the Industrial Revolution the majority of the population were rural and disabled people were not segregated since they could make some contribution, however minimal, to the production processes, which were largely agricultural or small-scale crafts. Finkelstein maintains that the lot of common folk was harsh, and as such that of cripples would not have seemed particularly more so (p 15). In this cooperative economy, those unable to take part in agricultural work would have been occupied with performing simple domestic tasks, or the spinning and weaving of fabric to help the household earn additional money. The advent of mass production and its enforced discipline made the self-determined cottage industries obsolete, pushing less efficient small-scale equipment (which was portable and more easily adaptable to individual physical requirements) out of the market, favouring instead large-scale machines and able-bodied workers who could operate them, while keeping to production norms and time constraints. As such, the physically impaired in society were doubly ‘crippled’ by the capitalist demand for more efficient production methods, which were supplied by the machinery of the Industrial Revolution. Paradoxically, although able-bodiedness, a prerequisite for the effective operation of large-scale production machinery, was established as “the norm for productive (i.e. socially integrated) living“, a new breed of physical impairment had simultaneously been engendered in the form of the industrial injury (see Lewis Hine below).
As such, it was materialist economic drive and the introduction of waged labour that saw the beginnings of the physically impaired being excluded from certain areas of society: “production for profit undermined the position of physically impaired people within the family and the community” (ibid, p 17). At the same time, unemployed malcontents were seen as a threat to civil society, and secure institutions were established to house and control the homeless, criminal, physically and cognitively impaired ‘deviant’ types. Prevailing work ethic dictated that those unproductive elements were to be despised, responsible as they were for poverty and the general degradation of society; on the other hand, a distinction needed to be drawn between indolent types who were unwilling to work and those unable to contribute owing to their physical impairments, with punishment meted out to the former and charity given to the latter. Thus disabled people were effectively removed from the working class and unemployed strata of society, institutionalised and stigmatised with the stereotypes of ‘in need of protection’ and ‘deserving of charity.’ Meanwhile, advances in medical science meant that impairments and their underlying causes began to be studied in greater depth, with medical professionals taking advantage of having at their disposal a “captive population of disabled people” which subsequently led to the medicalisation of disability and the prevailing notion that all forms of social deviation were illnesses and thus subject to treatment and curative measures by medical science (Sontag 1978, p 56). This institutionalisation and segregation of disabled people over centuries has meant that society proceeded to be designed and constructed in ways that fail to acknowledge that they even exist.
In Davis’ opinion, in preindustrial societies impaired people were treated, albeit unkindly, as “part of the social fabric” while the institution of so-called ‘kindness’ in postindustrial societies has led to the segregation of these people through the notion of disability (1995, p 3).
Hahn (1987) claims that in pre-industrial societies there were not excessive divisions or distances between home and the workplace, travel was a challenge for everybody, and as such disabled people were probably subjected to less extreme forms of discrimination than in modern societies based on autonomy and individualism. Barnes (2012, p 13) points out that prevailing ideologies (liberal utilitarianism, social Darwinism and eugenics) which coincided with these changing work patterns brought about by the industrial revolution also played a significant role in the adoption of extreme discriminatory policies and practices ultimately leading to the removal of disabled people from mainstream society. Kitchin agrees that the segregated spaces institutions (the poor house and the asylum) served not only as location for normalising processes to occur, but also protected the general public from deviant types, while those beyond normalisation were in effect incarcerated, not permitted to socialise or reproduce, which assisted in their effective removal from future generations. Hahn remarks that disabled people were not only segregated from the workplace, but also the products manufactured were designed with little regard for the needs of people with impairments, and thus “patterns of aversion and avoidance toward disabled persons were embedded in the construction of commodities, landscapes and buildings that would remain for centuries” (1987, 177).
Nevertheless, Oliver (1990) claims that although the rise of the institution as mechanism for repressive and ideological social control was instrumental in offering the possibility of removing those who were unable or refused to conform, the majority of disabled people still lived at home with their families. The change that took place in society was attitudinal in that disability became stigmatised, a source of shame, while it was in fact economic pressure that forced some families to institutionalise disabled members. Since disabled people were rendered unable to contribute to the household income, they came to be regarded as a burden.
He also observes (ibid, p 22) that this 19th century deterministic dichotomy, whereby individuals were classified according to their unwillingness or inability to work, led to the medical profession’s effective domination of disability, with impairments or individuals being defined according to “clinical criteria or functional limitation.” He also remarks that disability is not culturally engendered purely as a consequence of a particular society’s mode of production, but is a complex result of the type of economy, its relative surplus and the values that dictate how that surplus is redistributed among its population (ibid, p 51). The people are divided up according to whether they fall into the work-based or needs-based category, but rather than the latter being afforded a privileged status as a result of their inability to work (as Marx envisaged in the advanced communist state), they become oppressed. Oliver also criticises what he sees as Finkelstein’s oversimplification of pre-industrial society as an idyllic community; he claims it is difficult to measure the impact of capitalism’s rise on the disability experience, since history is silent on the issue (ibid, p 56). A further point of interest he makes is that the industrialisation process led to the decline of social roles that were previously acceptable, such as the beggar or the village idiot (p 85).
Oliver uses the theories of Marx and Foucault to demonstrate how capitalism first required the appearance of the isolated (private) individual as commodity on the labour market, and then that individual body was subjected to hegemonic systems of order and control, separating the bodies into types according to their perceived market value:
“between the more or less utilisable, more or less amenable to profitable investment, those with greater or lesser prospects of survival, death and illness, and with more or less capacity for being usefully trained” (Foucault 1980, p 172).
In this sense, Foucault goes on to observe the significance of biological characteristics with respect to the economy, and the consequent need for systems that guarantee the population’s subjection and their improved productivity. Oliver notes that most policies concerning disability are geared towards making disabled people more productive and employable; there are no incentives that encourage employers to adapt workplace environments or machinery to make them more inclusive (p 86).
In the 1970s there was a move to address disability rights and issues, with the UN adopting the Declaration on the Rights of Mentally Retarded Persons in 1971 and its Declaration on the Rights of Disabled Persons in 1975. Both declarations were drafted with the intention of “protecting the rights and assuring the welfare and rehabilitation of the physically and mentally disadvantaged“, enabling them to “develop their abilities” and “promoting their integration as far as possible in normal life” (UN 1971, UN 1975). Both state that disabled people are entitled to the same rights as other ‘human beings’ (where ‘feasible’ in the case of mentally retarded persons), protection from exploitation and abuse, as well as the right to education and training and to engage in productive work or other occupation (‘meaningful’ for mentally retarded, ‘remunerative’ for disabled persons). The latter document has a slightly more humanist tone, and although the 1971 declaration does not mention the right to ‘human dignity’, one assumes that article 3 of the later declaration is applicable to mentally retarded persons as well:
“Disabled persons have the inherent right to respect for their human dignity. Disabled persons, whatever the origin, nature and seriousness of their handicaps and disabilities, have the same fundamental rights as their fellow-citizens of the same age, which implies first and foremost the right to enjoy a decent life, as normal and full as possible.” (UN, 1975, Article 3)
This led the WHO in 1980 to attempt to provide a universally accepted definition of disability. The International Classification of Impairment Disability and Handicap (ICDH), draws a very clear distinction between impairment and disability:
“IMPAIRMENT: In the context of health experience, an impairment is any loss or abnormality of psychological, physiological, or anatomical structure or function …
DISABILITY: In the context of health experience, a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being…
HANDICAP: In the context of health experience, a handicap is a disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfilment of a role that is normal (depending on age, sex, social and cultural factors) for that individual” (WHO, 1980, pp 27-29).
The WHO document goes on to schematize this distinction as follows:
Thus the causality of disability and handicap are mapped out as resulting from impairments (which are themselves designated the results of disease or disorder).
But these definitions have been criticized, since they were developed by social scientists without the involvement of disabled people, are framed within strictly able-bodied paradigms about disablement experience, and are rooted in “individualistic medical definitions and bio-physical assumptions of ‘normality’” (Barnes, 2012 p 15). Since impairment does not necessarily bring about disability, it cannot be considered the cause; what constitutes an impairment is culturally constructed, and as such handicap as mapped out by the WHO model is ideologically motivated (Barnes, 2012 p 15).
Susan Wendell (1989) also points out that ‘normal’ as used to refer to role as well as function and ability depend on society, where standards of normality are constructed, and in a society that doesn’t consider a woman’s ability to read normal as part of her normal role, a blind woman denied the possibility of being taught using Braille is not handicapped according to the WHO.
Rejecting the three-tier model of the WHO, disability studies scholars usually refer to the definition set out in a 1975 discussion between the UPIAS (Union of the Physically Impaired Against Segregation) and The Disability Alliance, whose definition reads thus:
“we define impairment as lacking part of or all of a limb, or having a defective limb, organ or mechanism of the body; and disability as 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 participation in the mainstream of social activities” (UPIAS, 1976)
That this definition does not include learning, cognitive or developmental disabilities may be a sign of the times, or the oversight of the organizations involved in the discussion (organizations whose missions were principally concerned with physical impairments). Armer (2004) criticizes the UPIAS model as a ‘one size fits all’ ideology, since the authors comprised a small group of people with a specific range of impairments and experiences, while disabled people constitute a much broader community that lacks homogeneity (p 62).
Davis (1990) claims that the UPIAS definitions are politically significant since they come directly from the experience disability, they locate the cause of disability firmly within society and thus help to combat discrimination, they clarify the distinction between the disabled person and the social and physical environment, and they act as a tool for measuring the functionality of available services.
Disabled Peoples’ International (DPI) sets out the distinction thus:
“Impairment is the functional limit at on within the individual caused by physical, mental or sensory impairment. Disability 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.” (Barnes 1991, Ch 1)
Barnes states that this makes it easier to locate disability clearly within disablist prejudices and ‘institutional discrimination’ against disabled people, who are punished for not conforming to ableist paradigms of normalcy. He goes on to posit that it is therefore incorrect to employ the term ‘people with disabilities’ (the preferred term in the US), since its possessive nature reeks of medicalisation (people have impairments, not disabilities), something that disabled people reject. In addition,
“Referring to disabled people as ‘handicapped’ stems from the notion that the whole of life is a competition – as in horse racing or in golf – and implies that they will not do well. Also ‘Handicap’ has allusions to ‘cap in hand’ and begging. Neither term is acceptable to the disabled community.” (Barnes 1992, p 20)
He also stresses that grouping people as ‘the disabled’, ‘the blind’ ‘the deaf’, etc should be avoided since they merely ‘dehumanise and objectify’; should it be necessary to refer to the impairment, he claims, it is better to use ‘has epilepsy’ or ‘has arthritis’ etc. Likewise the use of emotive expressions such as ‘sufferer’, ‘afflicted’, or ‘victim’ should not be used because of their subjective nature, while wheelchairs do not ‘confine’ but ’empower’ since they are an aid to mobility.
The central theme here is not only about empowerment, but also the notion of independent living – not necessarily in the capitalist individualistic sense, but an improved quality of life brought about by self-determination and the ability to manage one’s own affairs, as Evans (2001) put it:
“the ability to decide and choose what a person wants, where to live and how, what to do, and how to set about doing it. These goals and decisions about a person’s life and the freedom to participate fully in the community have been and will continue to be the essence of what Independent Living is.”
In this way bringing about equal opportunities for disabled and non-disabled people alike. According to Davis (1990) full social integration means that seven needs have to be met in a logical order:
- technical aids
- personal assistance
Davis remarks that these are in fact everyday needs that are common to everyone in contemporary society, but in the case of disabled people they are labeled as ‘special needs’, which serves to demonstrate how deeply embedded the discrimination against disabled people is in a society organized in the interests of able-bodied people. These ‘socially created’ areas of need for disabled people constitute barriers that prevent them from participating in mainstream social activities, as well as in areas of secondary need such as access to education, employment and leisure.
Since the construction and arrangement of urban space is socially produced, some scholars have pointed out that disability cannot be considered a natural consequence of impairment, but is produced socio-spatially in capitalist societies as “landscapes of exclusion” (Sibley 1995) that have effectively “devalued the capacities of impaired people” (Gleeson 1996, 392). Kitchin (1998) believes that contemporary social spaces are both implicitly and explicitly arranged in such a way as to keep disabled people ‘in their place’, or to let them know they are ‘out of place’, thus sustaining the existing power relations and protecting society at large from deviancy.
An important point to notice is that the level of disability in a society can actually be seen as an indicator of its relative wealth and social progress (Sapey, 2004): the improvement of medical services in more developed countries means that greater numbers of people are able to survive for longer with impairments or diseases than had been a few decades ago – for instance the eradication of polio and increased survival rates of people with DS and Spina Bifida (Abberley 1987, 12). As such, addressing the needs of disabled people in society would appear to be of increasing urgency. Russ Fine, Director of injury-prevention research program at the University of Alabama, expressed the issue very lucidly:
“we have the technology to literally resurrect the near dead, but not the additional components to address quality of life. The question becomes: Whose needs are we addressing? Are we doing it for our colleagues and professional peers just so we can go to meetings and deliver papers? Do we just want to demonstrate our prowess and expertise in maintaining life in catastrophic illness injuries, where a generation ago our predecessors couldn’t do it?” (Fine, quoted in Shapiro, 1990)
Finkelstein observes that in relatively wealthy nations, advances in technology have enabled disabled people to achieve more complex goals with regard to self-sufficiency and the management of their own lives. On the other hand, Oliver (1990, p 37) identifies differences in the nature of disabilities prevalent in industrial societies compared with the Third World (sic), with heart disease and spinal injuries being more common in the former, blindness and deafness in the latter. This view is supported by Priestley (2001), who points out that the cultural, familial and societal issues disabled people face differ vastly according to geographical region and Majiet (1998), who asserts that while disabled people in the South are concerned with basic rights (housing, health, access to water) their counterparts in the relatively wealthier North are well beyond such basic requirements for survival. As Priestley states:
“In a global context, poor people are more likely to be affected by impairment and disability, and disabled people are more likely to live in poverty.” (2001, p 9)
Conversely, those in poorer societies have been able to group together and form working cooperatives, since their chief concern is for survival as opposed to escaping from institutionalisation and affirming their rights as citizens (ibid, p 10). Abberley (1987) observed that much of the disability experienced in the developing world is the result of poverty and malnutrition as well as a lack of adequate medical care (vaccinations), while Priestley adds the dimensions of conflict and landmines in these regions to the equation (2001, p 7-8); as such most of the impairments that exist in the developing world are the consequence of politically-motivated decisions – therefore not facts of nature, but preventable (Abberley 1987, p 11).
Overall I have begun to get an introduction to disability studies and some of the problem areas that are raised when discussing issues concerning disabled people. I have also learned that terms used by official organisations like the WHO, although attempting to reach an understanding of disability are rejected by disabled peoples’ organisations since they are still based on medicalised, able-bodied assumptions about normality and do not take disabled people’s experience into consideration.
If disability is socially created, the primary steps towards challenging its inherent stereotypes would be to change society’s opinions and present disabled people as social beings – perhaps this should even be done by non-disabled persons to avoid the ‘ghettoisation’ paradigm, where disability discourse is only conducted by and among disabled people.