Beyond the Social Model

Abstract - Research in Progress

The social model challenges the economic and social inequalities experienced by people with disabilities. This position rejects issues of the individual tragedy of impairment. In challenging issues of material access, unemployment and the poverty experienced within the disabled community the social model politicises exclusion, re-conceptualising it as practices of social oppression. An analysis of semi-structured interviews with people with visible, non-intellectual impairments identifies the participants’ acceptance of this model of social oppression. However, these accounts also demonstrate a more complex explanation for the experience of disablement. An analysis of the data illustrates how interviewees remain sensitive to their visible ‘difference’ and how they believe this image both betrays and constitutes them as ‘abnormal’. By allowing the interviewees to articulate what they believe is the real experience of disability this paper shows how qualitative methods of research can identify issues of disablement that remain outside the accepted discourse of social oppression.

Introduction: Models of Disability

The dominant social and cultural understanding of disabled people in western society is defined in terms of individual tragedy, the impaired body and the conceptualisation of ‘Otherness’. In this way it mirrors the oppressive representation of other marginalized groups such as women or black people in that it is the body, not the patriarchal or racist society, that is identified as deviant (Stone and Priestly, 1996: 699). A counter reading of disability however shifts the debate from issues of the body, or the distressed body, to a critique of social barriers that exclude disabled people from society, constituting them as ‘other’. This critique of oppression, coined ‘the social model of disability’ rejects the medical agenda that, it is argued, names and educates society to recognise the deviance and abnormality of the impaired body. In a society that has, according to Foucault, been permeated by the medical gaze, its power inscribed on social bodies, (Mc Nay, 1994: 87) issues of health (and thus ill-health) have become a form of secular religion (Lupton, 1994: 20).

In a period characterised by what Armstrong (1995: 399) has termed “the medicalisation of everyday life” individuals are expected to assume responsibility for their individual bodies. Thus, in this era of body maintenance and management bodies have become a form of somatic identity giving off signals about a person by betraying stories through the body, a practice that reinforces the social distinction between able and disabled bodies (Lenney and Sercombe, 2002: 7). As a counter position the social model fosters a debate, or discourse of exclusion, arguing that practices such as unequal job opportunities, segregated and insufficient education, environmental barriers, inadequate public transport and limited lifestyle opportunities for instance deny people with disabilities full access to the social world. As Oliver insists

Dependency is created amongst disabled people, not because of the effects of fundamental limitations of their capacities for self-care, but because their lives are shaped by a variety of economic, political and social forces which produce it (Oliver, 1990: 94).

In separating the body from the disability the social model in effect concedes the body, but not the totality of the individual, to medicine and the disembodied experience of social disablement to the social movement. As Tom Shakespeare has argued the achievement of the discourse of social disablement

Has been to break the link between our bodies and our social situation and to focus on the real cause of disability”, that is socio-economic practices that create and reinforce exclusion and the category known as ‘the disabled (1992: 40).

Imperative to the success and implementation of the social model to date has been the activism of disabled people. As disability critics such as Barnes and Mercer (1997) have highlighted, disabled people who were formerly the objects of study for ‘experts’ are now involved, not only in re-conceptualising the term disability but also in challenging policy development and research. This change in power relations calls disabled people to move beyond their individual, embodied experience of disability to mean tragic and abnormal and rather to account their experiences of difference and exclusion as a collective, externally imposed form of social oppression.

The Effects of the Social Model on the Research Process

However, the social model’s central concern with the deconstruction of power dynamics that create and reinforce the experience of exclusion for disabled people raises some challenging issues for researchers wishing to engage in disability research. The politicisation of the term and experience of disability has led disabled people to reject dominant paradigms of disability research, namely positivism and interactionism, at a number of different levels. It is argued within such paradigms the position of the researcher as ‘expert’ undermines the knowledge and experience of the disabled participant (Stone and Priestly, 1996). This silencing of the disabled experience within dominant paradigms results in the commodification of participants as they are rendered passive, and are excluded from the research production. When the researchers fail to work from the epistemology of the social model it is argued that the process in itself becomes oppressive. As Oliver has pointed out disabled people have lost faith in the research process, believing its objectives and findings fail to reflect disabled people’s needs or challenge the actual socio-material circumstances that create disablement (1992: 105). This dissatisfaction has culminated in the development of an alternative research agenda by disabled people dedicated to the ideology of the social model and to the empowerment of the disabled experience and disabled people as a collective.

First introduced by Oliver in 1992 the emancipatory research paradigm demands that researchers abandon their objectivity and prioritise the experiences and grievances of disabled people. Such a methodology insists that the researcher is at all times political and to this end must use their power to engage with and agitate for the empowerment of people with disabilities. This demands however more than just a change in epistemology; it is predicated on a radical inversion of ‘the social relations of research production’ (Stone and Priestly, 1996: 701) where the skills of the researcher are to be used as part of the process of collective empowerment for disabled people (Oliver, 1996: 21). These skills, it is argued, should reflect ‘a plurality of methods for data collection and analysis’ so as to respond fully to the changing needs of disabled people (Stone and Priestly, 1996: 706). Finally, the adoption of emancipatory research methods demands that researchers wishing to analyse the experience of disability commit to exposing and politicising the collective experience of disablement, thus making the individual experience a part of collective, political action (Oliver, 1996: 20).

Challenging as this method may appear, for many researchers dedicated to the study of disability some of these six codes of practice prove generic from the outset. Within the social sciences the legacy of studying the oppression of marginalized groups is difficult to ignore. Although disability studies may be a relatively new area for the disciplines there is a strong tradition and commitment in researching marginalized groups such as women, black people and the working class for instance. Supported by such classic studies as that on stigma by Goffman (1963), the social structures and effects of medical power by Foucault (1976) and later by such people as Turner (1987) and Armstrong (1995) and the disbanding of positivistic research within the study of health and illness, for instance, has left the forum ripe for the introduction of a critical social analysis of disability. To this end the emancipatory paradigm offers a way of engaging and analysing disability from a socio-economic and cultural perspective, thus shifting the focus of inquiry from the pathology of the individually afflicted, deviant body to the study of social exclusion.

Secondly as the rigidity of the qualitative/quantitative divide has begun to resolve (e.g. Bryman, 2002) researchers are being offered a greater choice in the utilisation of methods. A more hybrid approach to data collection allows researchers the possibility of using both qualitative and quantitative methods dependently or independently according to the content of the data they seek to obtain. For instance many researchers now use large-scale surveys to understand initially the site of research and then follow this with structured and semi-structured interviews to obtain more in-depth data etc. This changing face and use of methodology answers the demands of the emancipatory project as it enables researchers to “adapt a plurality of methods for data collection and analysis in response to the changing needs of disabled people” (Stone and Priestly, 1996: 706).

Thirdly, as the social model and activism of disabled people gains political legitimacy government sponsored studies are forced to recognise the importance of disabled persons or the disabled communities experience. Researchers who are in competition for funding, therefore, are forced to reflect these trends in their research design. Moreover, the activism of disabled groups has led to the expansion of such organisations as the NDA, the FORUM and AHEAD for instance. The ability of these disability organisations to offer funding for research and affect the accessibility of researchers to the disabled community allows disabled groups to shape the research process. Disability agencies can now choose to offer or deny funding and scholarships depending on what is deemed ‘acceptable’ research project and design.

These trends alone ensure that the epistemology of the social model increasingly impresses upon the research process:

• Increasingly research into disability adopts or at least must account for the epistemology of the social model
• Having adopted the epistemology of the social model researchers are committed to the analysis of social barriers and so to the empowerment of disabled people
• Where the research is funded or supported by such organisations as the NDA or the CRC for instance the researcher becomes accountable to disabled people and their organisations
• That researchers are now more willing to use a number of research methods to study the phenomenon of disability.

From Emancipatory Principals to the Analysis of Data

In principle at least, therefore, it would appear that the ideology of the emancipatory paradigm fits and supports the social model in the empowerment of disabled people. In liberating the disabled community from the tragic perception of disability by adopting the ideology of the social model emancipatory research appears to offer a way forward in identifying and exploring the true obstacles to participation.

Although my own research does not explicitly align itself to the emancipatory paradigm, in practice I have made the research process accountable to the core principles. My study investigates the complex ways in which people with impairments experience their disabilities. It attempts to problematise the one-dimensional understanding of disability by deconstructing the networks of social dynamics that label a person as disabled. Predicated on the ideology that disability is indeed a socially created phenomenon, this study from its outset reflects the epistemology of the social model. Empirically this research is developed from semi-structured interviews with people with visible, non-intellectual impairments. In this way the research seeks to identify the political within personal experience and thus give a voice to, or empower the politics of the communal experience of disability. Scholarships from two disability organisations, the NDA and the CRC, as well as a Government of Ireland Scholarship support the research. Thus at all times the research process is accountable to disabled people and their organisations. Although the adoption of the principles of emancipatory research design was a generic one, nonetheless in practice it attempts to adhere to its codes in the wish to maintain fair and accountable research practice.

The bulk of the research is divided into four case studies. The first case study involved analysing data drawn from a snowball sample of people with disabilities. This particular case study was used at the outset of the study in an effort to identify some of the key grievances raised by the participants. From the findings of this snowball sample it was determined that the study should focus on three sub-groups within the disabled community. The first group of participants was drawn from those disabled people working within the traditional practice of sheltered workshops and access was achieved through the workshop programmes of the CRC. The second group was drawn from the political wing of the disabled community and was accessed through the FORUM of people with disabilities. The third group as of yet has not been accessed. These participants will hopefully be drawn from those within the disabled community identified as having an acquired disability as the analysis of the snowball sample indicated that their experience of social disablement will be influenced as much from their experience of being a non-disabled person as from being a disabled one.

More than merely offering a framework for disability research the emancipatory model has proved an essential tool for the analysis of this data. As the above discussion has highlighted, the codes underpinning the emancipatory paradigm offer clear guidelines for the aims of the research process. However, what is interesting is that these same codes fail to recognise the inherent difficulties that the researcher can experience in translating these ideal typologies to the study of the banal and unpredictability of everyday life. It is at this juncture that the emancipatory principals are both the most useful as the well as the most destructive. At the beginning of each interview I ask the interviewees to tell me what they understand by the term ‘disability’. Although a simple question the explanations offered by the interviewees can highlight some of the issues that are important to the participants. More important for this paper however is what is at stake when one chooses to work from a well structured set of principles that defines what is, and is not, acceptable within the politics of disability research.

Take for instance when one of my interviewees, Glen, was asked to give a \definition of the term ‘disability’.

JM: How would you define the term, disability?

Glen: Disability, being limited as in what you can do like. Disabled, could be, it has many forms - being bound down, you cant get to different places, do different things, get a job, so you’re totally stuck down. My disability has dramatically changed, it’s totally opened my eyes to, for example, to normal nights out, different things that you can’t do what you did before. You’re totally limited as in where you can go, what you can do, the places you can get into, different things.

On one level this explanation gives a voice, and experience, to the theory, changing the social model from a two dimensional argument to a three dimensional reality. Clearly, for Glen, the experience of disability means one of limitation, best explained as a sense of being ‘bound down’ or ‘totally limited in what you can do’. It is interesting to note however that this sense of limitation occurs only within social interaction. He experiences his disability insofar as he is unable to access places or public venues, get a job or move freely around the social environment. In proposing that disability takes ‘many forms’ Glen rejects an exclusive medical reading of impairment that focuses only on the passive, deviant body, instead choosing to define disability as practices of restriction that deny him the possibility to participate fully in society. In so doing the data gives legitimacy to the concept of social disablement, makes political the personal account of exclusion and supports the social models efforts to empower disabled people and the community to demand equality.

However, emancipatory research seeks to give a voice to the personal experience of disability. Therefore it uses in part a bottom up methodology that values the themes or codes, anticipated or unanticipated, that emerges from the data. Unlike the data generated from the interview with Glen, not all data can be as neatly analysed using the epistemology of the social model. Bob, who suffers from chronic arthritis, gave his definition of the term ‘disability’. When asked what he understood by the term disability he explained,

Bob: I can remember having a friend who, she was in a wheelchair, and we used to have arguments about disability and handicap, you see. And I said well I’m not really disabled but I can be, I see myself as handicap. And she said ‘and you know where handicap comes from? That’s from ‘hand in cap’’. ‘Well’ I said ‘not in my head’ I said. It doesn’t come from that. It comes from a handicap race where a horse is actually given more weight you see, and that’s a handicap race and like that.’s where handicap comes from. It means you’re loaded. So for me personally, that’s what a handicap is for me then that, you are loaded, that you have various difficulties that we say the able bodied person wouldn’t have that just makes life that much harder, that much more difficult.

Although Bob in his arguments with his friend is clearly aware of the political debate surrounding the ‘handicap’ v ‘disabled’ label he is unable to fit his experience into the social models ‘as a result of practices of social disablement’ definition of disability. In an effort to give a valid account of his body as disabling, or his body in pain, he reverts to using the traditional ‘handicap’ label. In so doing Bob introduces a distinction between the able and disabled person thus reverting to the classical medical definition for impairment, one that according to the social model denotes abnormality and dependency (e.g. Linton, 1998: Chapters 2 and 3). By explaining he encounters various difficulties that an able-bodied person does not it would appear that Bob is turning his back on the ideology of the social model and accepting that his impairment is a personal problem.

Using Emancipatory Methodologies in Disability Research - Empowering or Disabling?

What is at stake in this paper however are not the analytical issues that this data exposes but rather how, when personal accounts of disablement do not fit the ideology of the social model, can they be dealt with within the emancipatory paradigm? According to the six core principles of the research paradigm research is essentially a form of oppression if it first and formally fails to commit wholly to the beliefs of the social model and if it cannot be used to empower people with disabilities. Imperative to this is a rejection of the notion of a disabled body or a body disabled within the socio-cultural sense. Although the social model does not deny the reality of impairment it proposes that it should not be understood to play a role in the creation of disability.

An analysis of the data generated through Bob’s interview however finds the theme of embodiment to be central to the experience of oppression. Emancipatory research in an effort to empower disabled people is asked to account for the voice of the disabled person and to politicise the struggles of disabled people. As a researcher committed to expounding the emancipatory struggle of disabled people Bob’s definition of his ‘handicap’ raises some interesting dilemmas. Bound to the teachings of the social model it appears impossible to give a voice to Bob’s personal account as political, even though accounts of the body in pain, as a site of abnormality etc arise throughout my interviews. Within the epistemological boundaries of emancipatory research Bob appears to be trapped within the medicalisation of disability; therefore his experience cannot, as a form of political collectiveness, empower disabled people.However, if we move away from the strict binaries set by the social model what is interesting in Bob’s account of the embodied experience of pain is not necessarily his investment in the medicalisation of disability, but rather how he uses a medical discourse with a twist. In the spirit of true emancipation he rejects the ‘hand in cap’ definition, and in so doing leaves behind the understanding of disability to mean one of tragedy and dependency. Rather in redefining handicap to mean difficulties of the body Bob exposes the reality and implications of the distressed body for people with disabilities. What Bob has succeeded in doing is not returning to a medicalised reading of disability but rather challenging the shortcomings of the social model.

The social model’s denial of the body has left the body’s experience of pain, or even of fetishism or degenderfication for instance, unaccounted for. However, essentially Bob has succeeded, in redefining handicap to mean difference, in expanding the boundaries of the concept of oppression. As Pinder (1995: 608) has argued, and what Bob has highlighted and attempted to challenge is how the medical reality of chronic pain affects one’s ability to access work for instance and participate fully within society. Clearly such schisms within data have the potential to severely challenge the effectiveness of the emancipatory research paradigm to give a true account of the experience of social disablement. The emancipatory paradigm as it exists, dependant on the parameters set by the epistemology of the social model, places great tensions and limitations of research. Oliver has argued that disability research must:

Facilitate a politics of the possible by confronting social oppression at whatever levels it occurs (1992: 110).

However, if the ideology or the epistemology of the social model which informs the paradigm is itself limiting then maybe what is required at this juncture is a more reflexive use of theory and empirical research together. Maybe at this point we need to readdress the potential of the ‘possible’ and where it emerges, use the findings of emancipatory research to push the boundaries of the definition of social oppression. Maybe then research can truly address, challenge and politicise what it is that people with impairments articulate as their sites of disablement.

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