Disability Studies – the medical and social models

As Lyotard pointed out, “narratives allow the society in which they are told, on the one hand, to define its criteria of competence and, on the other, to evaluate according to those criteria what is performed or can be performed with in it” (1984, p 20). The 19th century narratives that measured, identified, categorised and segregated abnormal ‘deviant’ types continue to inform institutional policy and discriminate against disabled people to this day, and according to disability theorists deserve to be challenged in much the same way as similar discriminatory narratives concerning gender and ethnicity have been. Davis (2006) hypothesises that women, homosexuals and people of color [sic] were also formerly considered as ‘disabled’ categories and their oppression was established and sustained through medical and scientific discourse.

“In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society” (UPIAS, 1976 p 14)

Much of current disability theory is grounded on the notion of the social model, based on the UPIAS definition of disability, which locates disablement in societal prejudice and the barriers which prevent people with impairments participating in mainstream activities of society (UPIAS, 1976). This is in direct opposition to what has been described as the ‘medical model ‘of disability, where the focus is on the individual’s impairment and consequent negative experiences – the problems experienced are the direct result of an individual’s own inadequacies or limited capabilities (Oliver, 1990 p 29) – called the ‘medical model’ since it requires the intervention of medical science to try and cure the impairment in a bid to returning a state of ‘normalcy’ to the body and reduce suffering. Since this model views people with impairments in a negative light (as tragic, weak, dependent, a burden to others and a drain on society) it has also been called the ‘personal tragedy model’ or ‘individual model’, where the disabled individual is regarded as an ideological construction of hegemonic capitalist individualism, lent support by the parallel ideologies of medical intervention and ‘normalcy’ that determine social policy and attitudes (Oliver 1990, p 45).

“…if disability is defined as social oppression, then disabled people will be seen as the collective victims of an uncaring or unknowing society rather than as individual victims of circumstance.
Such a view will be translated into social policies geared towards alleviating oppression rather than compensating individuals.”
(Oliver 1990, p 22)

Harlan Hahn notes that the medical definitions of disabilities focus on cause rather than effect, on limiting effects of impairments rather than the abilities of individuals, thus demanding they adapt to the environment rather than obliging authorities to change their policies:

Almost no consideration is given to the possibilities of modifying the environment, changing “roles and tasks,” or alternating the expectation that all men and women are required to possess a full range of physical, mental, and emotional capacities to qualify for membership in the human community.” (Hahn 1985, unpaged)

The medical model is therefore guilty of propagating the idea of an intrinsic link between an individual’s physical ability and their eligibility for employment and other major life activities. Disabled people are viewed as patients by the medical profession, who take control over their lives while demanding that all efforts are geared towards the goal of making a full recovery.

Although the social model does not deny the roles played by nature in the form of disease, genetics and physical trauma, Abberley maintains, it underlines the fact that the disabling effects of impairment really only emerge in specific social and historical contexts, which in turn are “determined by a complex interaction of material and non-material factors” (1987, 12). In capitalist society, where the accumulation of capital and maximisation of profits are the priorities, non-productive disabled people are seen as a problem: those that can be returned to productivity are encouraged to deny their suffering and subjected to normalisation processes; those that cannot are institutionalised – creating in the process a whole area of employment (the care industry) and maintaining the existing structure of society, whilst propagating the oppressive myths of impaired people as tragic, diseased, useless and a burden. Abberley thus identifies the beneficiary of disabling ideology as the current and prevailing capitalist social order (ibid, 16), while Finkelstein (1981) sees the establishment of the professional care sector as a further barrier preventing disabled people from accessing mainstream life. Barnes points out that in the individual model the human being is considered flexible and changeable, while social environments are seen as permanent and unchangeable, thus necessitating the ‘normalisation’ of deviant bodies; this is clearly an invalid argument since humans have always adapted the environment to cater for their needs (1991, p 25).

The underlying philosophy is that medical treatments, institutionalisation and rehabilitation are oppressively imposed on disabled people, who are robbed of their self-esteem, disempowered and infantilised in these ‘normalisation’ processes. Brisenden (1986) stresses that undue emphasis on clinical diagnosis provides only a partial view of disability issues, and too often treatments prescribed by medical professionals in no way improve an individual’s quality of life; moreover such quality of life issues are regarded as an “intrusion upon the purely medical equation” (p 176). In a society which is organised and constructed according to the needs and desires of people who don’t have impairments, there are not only physical barriers to overcome, but also attitudinal ones, and since these are not a direct result of the impairment (it is possible to have an impairment without being disabled (Finkelstein, 2001)), the social model claims that this constitutes discrimination in the form of disablement.

“once social barriers to the re-integration of people with physical impairments are removed, the disability itself is eliminated. The requirements are for changes to society, material changes to the environment, changes in environmental control systems, changes in social roles, and changes in attitudes by people in the community as a whole. The focus is decisively shifted on to the source of the problem – the society in which disability is created.” (Finkelstein 1980, p 33)

Oliver (1990) explains that, for example, deaf people are disabled because of society’s failure to acknowledge sign as a language in its own right and learn to use it, rather than deaf people’s inability to communicate with non-deaf people, and this should be understood in light of the fact that we do teach other languages in schools, even ones that are now all but extinct (p 41). He also goes on to express reservations about the medical profession’s authority when it comes to assessing driving ability, evaluating capabilities for working, deciding on the allocation of benefits or choosing relevant education or training courses – in his opinion, doctors are clearly not the most suitable professionals for making such decisions (p 48). He also points out that disability (in his case spinal injury) cannot be conceived of merely from psychological or interpersonal perspectives, since this would overlook material factors that warrant consideration (employment, housing, finance) and are subject to changes over time (68).

According to Albrecht and Levy (1981, cited in Oliver 1990, p 78), disability is constructed socially so that certain powerful groups can advance their own interests, and thus the “so-called ‘objective’ criteria of disability reflects the biases, self-interests, and moral evaluations of those in a position to influence policy“. Oliver speaks of the difference between social-constructionist and social-creationist models: the former locates disability in the minds of able-bodied people and is manifested in hostile attitudes and social policies; the latter locates the problem in the behaviour of powerful organisations and institutions in society rather than in the sum total of members’ individual and collective views (p 82).

Armer (2004) accuses the Marxist-materialist theories of Oliver, Finkelstein and Abberley of amounting to little more than conspiracy theory, a “gripping yarn” where disabled people are oppressed for the economic advantage of a dominant elite, while pointing out that Marxian Utopia is a construction for the able-bodied and thus inappropriate for analysing the social construction of disability. He suggests that the roots of disability go back much further than the rise of capitalism, citing the examples of classical Greek city-states and Sparta in particular where infanticide was practiced as a means of rooting out those considered imperfect or abnormal, or early hunter-gatherer societies where the weak and infirm were left to perish in times of famine or hardship. In his opinion, this materialist ‘structural selectivity’ gave rise to the concept of ‘normal’, and in modern society has been translated as the ability for a worker not only to be self-sufficient, but also to be able to provide for their dependants and serve the greater society: an inability to perform these functions is thus seen as ‘abnormal’, leading to disabled people being socially dislocated and thence isolated from mainstream activities: “the interests of some (the normal) are institutionally preferred over those of others (the abnormal)” (p 61).

Kitchin (1998) also disagrees with Oliver’s notion that disability is socially constructed as a means of achieving capitalist economic goals. Drawing from psychoanalysis, he sees fear or disgust of the Other as deeply embedded in human nature; the Other is constructed as a by-product of social groupings according to sameness, the result of the basic survival technique where boundaries are drawn between what is perceived as ‘good’ and ‘bad’ in order to protect (and in the process define) the self (p 344). In his view, disabled people are oppressed by power relations – they are rendered powerless by politics, ostracised from mainstream social activities, excluded from the labour market, confined to institutions, and finally taught to ‘know their place’, to believe the logic of the dominant ideology and hence accept their oppression (p 346).

What the social model did was to enable disabled people to unite together and mobilise against what they considered to be institutionalised oppression. As Butler noted,

those who gain representation, especially self-representation, have a better chance of being humanized, and those who have no chance to represent themselves run a greater risk of being treated as less than human, regarded as less than human, or indeed, not regarded at all” (2004, p 141)

Indeed, their self-representation was instrumental in getting the ADA and DDA passed in the US and UK respectively, which should be considered positive moves, regardless of the controversy surrounding how that legislation is implemented and enforced.

Although the social model was initially lauded as a breakthrough in empowering disabled people and a step towards changing societal attitude towards disability, it has since come under attack from disability theorists for its failure to take into account the disabled experience. Locating disability in society would seem to overlook the physical and psychological effects of impairment, and a simple division of personal (subjective, individual, rooted in the impairment) and public (objective, societal, disabling) experiences does not strictly define the difference between impairment and disability, while also dismissing the psycho-emotional experiences of disability as personal angst rather than internalised oppression (Thomas 2004, Reeve 2002).

Morris (1998, p 15) warns that failing to include impairment experience into disability politics would result in definitions and perspectives continuing to be imposed from the non-disabled world, resulting in further alienation and disempowerment. What Thomas (2004) has suggested is deeper analysis of impairment effects and disability effects as a way of distinguishing between them, while Crow (1996) advocates that impairment be reassessed and incorporated into a renewed social model, a holistic approach since experiences of disability and impairment are intertwined and not fixed. Finkelstein (1996) sees this as a schism between what he terms the ‘active’ and ‘passive’ social models – the active removal of ‘disabling barriers’ in contrast to passive reflection on ‘experiences of discrimination.’ Oliver (2004), who claims that he actually invented the term ‘social model’, sees the emergence of a plethora of different models (medical, charity, welfare and administrative) as merely confusing the matter, and refuses to accept that the social model does not take into account personal experience, insisting that it “emerged out of the experiences of disabled activists in the 1970s” (ibid, p 25); instead, he maintains that individual experiences are not overlooked by the social model, but should not be considered in isolation from disabling contexts and environments. He further suggests that far too much time has been spent discussing the model rather than making any concerted effort at employing it to bring about societal and political change (ibid, p 29-30).

Shakespeare and Watson (2002) assert that the social model, especially in its ‘strong’ version, has become a sacred cow, and reduced discussions to black and white interpretations. They suggest that the social model was useful in a modernist way to liberate, empower and mobilise politically, but just as the feminist movement in the 1970s was faced with the challenge of denying sexual difference, so too the disability activists (who only secretly admit to the physical relevance of their bodies, their aches and pains) are unable to continue denying the importance of physical difference (p 11). Pushing the social model to its logical extreme, they posit, impairment would not be seen as something to be avoided, and we would thus be less concerned about road safety, gun regulation and mine clearance (p 13). Just as feminist theory moved beyond the limits of the sex/gender dichotomy it had initially set up, so too argue the authors does disability theory (not least since they regard disability as quintessentially postmodern.

“because it is so complex, so variable, so contingent, so situated. It sits at the intersection of biology and society and of agency and structure. Disability cannot be reduced to a singular identity: it is a multiplicity, a plurality.” (ibid, p 19)

Their point is that the outdated ‘modernist’ social model is too rigid, and by merely setting itself in diametric opposition to the medical model, it remains a simplistic and unsound approach:

“It is difficult to determine where impairment ends and disability starts… Disability is a complex dialectic of biological, psychological, cultural and socio-political factors, which cannot be extricated except with imprecision.” (ibid, p 24)

They also argue that the idea of removing all disabling barriers in society is not only a utopian vision, it is also flawed in the sense that some of those barriers are not brought about by social conditions but as a result of the impairment, and society could never be altered in order to accommodate for them all. They suggest that there needs to be an entirely new paradigm shift, one that treats impairment as an ineluctable fact of life:

“everyone has limitations … everyone is vulnerable to more limitations and will, through the ageing process, inevitably experience functional loss and morbidity.” (ibid, p 27)

Denying their anxieties of vulnerability and mortality, non-disabled people project them onto disabled people and this has become the source of the latter’s exclusion, oppression and aggression. By recognizing the precariousness of our existence (Butler 2004, 2009), and our dependence on each other for existence, as well as the fact that nobody’s body works perfectly all of the time, it is hoped that a new model of can be designed, which doesn’t reduce disability solely either to medical conditions or to the results of barriers in society. Morris (1998, p4) affirms that it is important to reclaim the word impairment, despite its negative connotations, in order to be able to distinguish it from disability and thus be able to name the oppression, though she does express concern that by discussing the realities of living with impairments non-disabled people will jump on them with the ‘life not worth living’ argument.

In Albrecht and Devlieger’s study (1999), it was revealed that pain and fatigue are two aspects that dramatically diminish disabled people’s perceived quality of life. With the onset of disability, they note: “[t]he body becomes the dominant center of attention and its unpredictability and its vulnerability constantly threatens the person with the disability.” Since feelings of pain, vulnerability and fear are invisible and not easily determined or measured, the individual’s credibility (as detailed by Kleinman 1988) or mental health can also be called into question, and as such many individuals feel they cannot discuss such things with doctors or family members for fear of seeming worrisome or being a drain, while dealing with them alone can create feelings of loneliness. They also list fatigue and loss of control over bodily function as aspects of disability experience can that significantly reduce quality of life (1999, pp 984-985).

Liz Crow (1996) agrees that part of the reason that impairment has been excluded from the social model is that it undermines the positive thrust of disability discourse, and fuels the ableist claim that disabled life is not worth living. She declares that impairments cannot realistically be overlooked since they are an integral part of many people’s daily lives, and even if disabling social barriers were removed from the equation, certain individuals would still experience personal struggles as a direct result of their impairments. She also proposes that the movement itself may be elitist in the sense that some disabled people are unable to contribute (by attending meetings, etc) because of their impairments, and as such she accuses the movement of replicating the very same “exclusionary aspects of the society it purports to challenge” (1996, p 59). Although she concedes that intervention is by and large for the benefit of non-disabled society, rather than for the disabled people it purports to assist, she advocates a re-analysis of the issue and a reallocation of resources and support systems as opposed to flat rejection, since in some cases it is clear that intervention does function in a positive way (p 64). She also makes it clear that disability pride comes not from the fact of ‘having an impairment’, but from the way that this and the societal prejudices are experienced and lived with on a daily basis (p 70). In conclusion, she writes:

“A renewed approach to the social model is vital, both individually and collectively, if we are to develop truly effective strategies to manage our impairments and to confront disability.” (1996, p 70)

Carol Thomas advocates a social relational approach, since although the social model has been instrumental in bringing about societal change with regard to ‘material wellbeing’ and ‘civil status’, disablist attitudes are still prevalent in more intimate areas of life such as family, sexual relations, child rearing and parenting (2004, p 34). Recognizing that oppression works from the inside as well as from the outside, that feelings of worthlessness or unattractiveness can be as oppressive as being unable to enter a shop or a bus because of physical barriers like steps. In her opinion, internalized oppression is a form of disability that “shapes in profound ways what people can be, as well as affecting what they can do as a consequence” (p 41). She expresses her fear that overtheorizing through materialist and poststructuralist epistemological perspectives risks obfuscating the real issue in turbid linguistic deconstruction, offering little ground to bring about positive, tangible change to the lives of disabled people. She lauds the work of Mark Priestley, who engages with disability in the life course, analysing the various ways disability is perceived and affects a person at different points during their lifetime, and who stresses that “it is impossible to disentangle the lived experience of disability from the context of disabling societies” (Priestley 2001, p 3).

Priestley in his turn criticizes the social model for its failure to engage with disability as a global issue, instead framing it within what he terms a minority (privileged, Western) worldview, although as he affirms (citing UN estimates) roughly 80% of the world’s disabled people live in ‘so-called developing countries’ (ibid, p 3). As such, the pursuit of independent living in the minority world is focused on individual choice and escape from welfare segregation and institutionalization, whereas in the majority world the focus tends to be on survival, and as such micro-economic employment schemes are a priority (ibid, p 10).

Since it is clear that the nature of an impairment is functional with regard to the type of disability and the extent to which it is perceived, it follows that impairment needs to be addressed for disability to be adequately theorised. Since the two are interlocking and overlap in very complex ways, often unique to an individual, this may prove to be a near impossible task, but the issue of impairment effects warrants attention. It is impossible to deny bodily experience, as disabled feminist Ynestra King put it when enraged at the system that makes one feel as if one is one’s body:

A tempting response is to resort to an ideal of self as bodiless essence in which the body is completely incidental, and irrelevant. The wish that the body should be irrelevant has been one of my most fervent lifelong wishes. The knowledge that it isn’t is my most intense lifelong experience” (1993, p 74).

Denying the effects of impairment also runs the risk of denying the effectiveness of certain forms of intervention, which are not of necessity purely medical, but can also be rehabilitative, educational or occupational. Barnes (2012) points out that the social model does not deny the significance and necessity of certain interventions on an individual basis, but rather highlights their fundamental inability to empower people; by shifting the focus from limited functionality caused by impairments onto the physical and cultural barriers in society that prevent access and create obstacles, the social model should be regarded as:

“a tool with which to provide insights into the disabling tendencies of modern society in order to generate policies and practices to facilitate their eradication” (Barnes 2012, p 17).

He also gives examples of how the social model has been used when drafting anti-discrimination policies in the UK and EU, as well as the UN’s updated Convention on the Rights of Persons with Disabilities
(2006).

Barnes suggests that the ways in which people cope with impairment is dictated by their ability to access social and material resources, and that the current “materialist world view that prioritises the pursuit of profit over equality and social justice” means that a rising proportion of disabled people in both developed and developing countries are being denied access to such resources (Barnes 2012, p 21). He suggests that rather than rejecting the social model out of hand as being outdated or irrelevant, or becoming fixated on abstract theorising, the social model should be reassessed and its insights used for constructive purposes that “contribute to the ongoing struggle for change” (ibid, p 22).

The idea of claiming a homogeneous disabled identity through common experience has come under some criticism, since not only is there a multitude of different disabilities, but people may experience the same disability in different ways, while disability theorists are unable to agree what actually defines disability (Lewiecki-Wilson, 2008). Indeed, the Deaf (the culturally Deaf as opposed to the physically deaf) don’t consider themselves disabled at all, but rather a linguistic minority differing only in their way of communication (speaking sign) and their impairment is neutralized in a signing community, whereas wheelchair users cannot overcome their motor impairments by becoming a member of a wheelchair using community (Davis 2006, Lane 1995).

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s