‘Drifting down the Gulf Stream: navigating the cultures of disability studies’
A Paper written and presented by Helen Meekosha at the ‘Disability at the Cutting Edge: A Disability Studies Research Institute (DSaRI) colloquium to examine the impact on theory, research and professional practice. September 12, 2003, University of Technology, Sydney. Copyright 2003.
What are disability studies?
Over the past thirty years there has been a growing social, political and intellectual re-evaluation of the situation for disabled people in the broad structures of society. This re-evaluation began to accelerate after 1981 with the International Year of Disabled People, a moment that raised the idea of disability as a human rights issue in global public discourse. This symbolic statement by the world community drew on other human rights struggles – by women, by racial and ethnic minorities, by gays and lesbians – and had its influence in the academy.
The fundamental challenge lay – as it had for other marginalised social sectors – in replacing biological determinist views of their social presence, with a recognition of the social and political ways in which their oppression had been constructed. The ‘social model’, as it came to be known, argued that whatever the individual’s impairment or apparent differences from some socially sanctioned ‘norm’, their capacity to operate in society was primarily determined by the social recognition of their needs, and the provision of ‘enabling’ environments. The ‘social model’ came from a British experience of a particular form of society, governmentality, and social consciousness and theory. In a broader sense social approaches began to appear throughout Europe and the industrialised world – tied to policy questions about state and community provision.
The consequence of the rise in the social model as a policy discourse was reflected in intellectual critiques of medical and individual approaches to explaining, interpreting and responding to disability. One of the discursive strategies produced by these developments evolved into a conceptual distinction between “impairment” as a functional limitation of the individual actor, and “disability” as a socially generated system of discrimination. This dichotomy was helpful in offering analytical purchase on a complex and multidimensional phenomenon, yet it could at times undermine the experience of disabled people in their daily lives, where the distinction was both blurred and less meaningful.
Disability studies can be thought of as involving:
- a) critiques of specific areas of disciplinary activity,
- b) a project to evolve an interdisciplinary frame that can be incorporated into all disciplines, and
- c) a new sphere of scholarly work that has a similar authenticity as women’s studies and Black studies (but not gender studies, and race and ethnic studies).
Why has disability studies emerged?
Disability studies has developed as part of a political project, where the recognition of the discursive power of the old order to disable people with impairments leads to an alternative world view and analytical pathway. As such it has been closely tied to the nature of the social movements of disabled people in various countries – themselves affected by the social structures and histories of particular societies.
Social movement theory has demonstrated the ways in which ideological, intellectual, social, economic, political and cultural forces interact (Meekosha and Jakubowicz 1999). As Melucci has argued, social movements are generated through a sequence of stages – in particular, a transformation in awareness that personal problems are socially generated, and that alternative ways of thinking are critical to addressing these problems(Melucci 1995a). Honneth (Honneth 1995) also argues that the pain of experiencing oppressive ‘disrespect’ (the withholding of recognition) can be transformed through an appropriate political process into a politics of self-validation, in which the subject position and experience of the individuals are validated and their rights to participate are legitimated. Indeed Honneth argues that: “only if the means of articulation of a social movement are available can the experience of disrespect become a source for motivation of acts of political resistance” (op cit 1995:139)
The evolution of disability studies thus can be seen as an integral part of the emergence of the social movement, not merely a reflection of a particular period and politics of liberation, but also as an intellectual struggle within the academy against dominant and unreflective paradigms of normality.
How does disability studies “get done”?
Disability studies is set within a broad modernist terrain, where ideas about the individual subject in late capitalism influence the moral universe of both the humanities and the social sciences. Initially disability studies encompassed arguments within disciplines, and represented charges against particular disciplinary modes of thinking. It is useful to consider the approaches of two of the ‘founding fathers’, one American (Zola 1982)and the other British (Oliver 1983), both men with acquired physical impairments.
Both men were sociologists, yet even in their early work they revealed the skeleton of the rather different trajectories that were to become dominant in British and American scholarship. Zola was an activist within the US academy, influenced by ethnomethodological and interactionist innovations that were challenging systemic models of the social in American sociology. Zola’s concern was to articulate the lived experience and perceptions of people with impairments, as a means of discovering the social dynamics of disability. He wanted to open up the therapeutic (particularly medical) relationships that had cast disabled people into roles of inert and de-subjectivised bodies.
Oliver was more concerned with the social services environment that on the one hand abandoned disabled people in institutions, and on the other saw their personal ‘tragedies’ as the sole focus for intervention. He was working within the radical social work movement that developed critiques of the social welfare state, and the role of social workers as managers of the state’s problems.
If we accept the tension and the connections between theory and method as a pathway to the professional engagement with disability, it will be come evident that the methodologies that have been applied are very much constituted by the theoretical and indeed the political assumptions that are brought into apparently pragmatic considerations.
Discourses of Disability Studies: a contest for dominance?
With the emergence of disability studies a surprising contest seems to have developed between scholars in the USA, and those in Britain. In the ‘periphery’ of the English speaking world, Australia, Canada and so on, the approaches tend to be rather more eclectic, drawing on both metropoles and extending them through the specificity of the colonial-settler histories of their own societies. The Culture wars of the North Atlantic are not solely those of ‘Old Europe’ and the New World Order, (though elements seem to be appearing of the neo-conservative debates). Rather there exists a tension between the remnants of the materialist and social focus of British Marxism, and the more ‘pragmatic’ tradition of US social psychology and literary studies, with the American interest in the realities perceived and constituted through reflections on (and of) the world.
Without carrying out an archaeology of disability studies (qua Foucault) which is not the focus of this paper, we can still recognise the way in which national cultures and histories, particularly intellectual and ideological histories, can frame and channel the questions identified as being of interest, and the methods applied to resolving these questions. It is thus a useful entry into these debates, to consider two recent collections of articles, both of which claim to be advancing “the field”. The British collection (Barnes, Oliver et al. 2002) specifically speaks of “social scientists in universities and colleges across the world”, proposing thereby a global claim to relevance. The US collection,(Snyder, Brueggemann et al. 2002) published through the Modern Languages Association, sets its goals “as a study shelf devoted to the critical analysis of disability in literary and language studies. �[and to] show how disability serves as a master trope that challenges pervasive social fictions about the experiences of embodiment (p4). ”
Now it may be argued that seeking to compare Social Science with the Humanities sets up a conflict by necessity, a reflection of contrasting disciplinary world-views and methodologies. Yet there appears to be little US social science, nor British literary studies compilations, discussing disability studies. Each of the collections discussed here uses the term “Disability Studies” as its major title, and each seeks to be interdisciplinary. The material to be discussed can therefore be usefully compared and critiqued, and indeed, as I will later argue, an effective disability studies must incorporate an understanding of the experiential, discursive and structural issues involved.
Disability studies in the US has been influenced by identity politics and the corresponding academic disciplines emerging from the liberation movements of the 1960s – feminism, race and ethnic studies, gay and lesbian studies. Indeed debates around the concept of disability have been similarly influenced, reflecting social constructivist approaches to understanding social difference and inequality. Questions such as are disabled people a minority group or stigmatised group have a familiar ring to those who have followed similar debates in feminist and race studies.
The work of social psychologists Adrienne Asch and Michelle Fine (Fine and Asch 1981) argued that the complex interrelationship between the gendered and disabled experience requires systematic examination, and cannot be dealt with through one category or the other. Women with Disabilities: Essays in Psychology, Politics and Culture (Fine and Asch 1988)drew on the politics of the personal in an edited cross-disciplinary collection, that had a powerful influence on many disabled women not only in the US but also at international level. In particular their approach foregrounded first-person narratives of the disability experience, and would thereby set up a mode of addressing disability that tended to concentrate on personal responses rather than social structural frameworks.
The strong US tradition in the humanities, literary studies, history, philosophy and the emerging cultural studies has greatly influenced the development of disability studies. The major academic/movement journal, Disability Studies Quarterly (DSQ), demonstrates the concern with these areas – joining social psychological perspectives with rights and access issues. The critical social sciences have not been so much in evidence from north American scholars, who as social scientists tend rather to focus on health and illness issues rather than the examination of the disability world.
Case study: Disability Studies: Enabling the Humanities
The editors of this collection state that the collection has two purposes
……first, to show how to integrate the concept and representation of disability into all our teaching and scholarship; second, to offer strategies for integrating people with disabilities into the classroom and the profession (Snyder, Brueggemann et al. 2002).
Later they refer to the volume “as a study shelf devoted to the critical analysis of disability in literary and language studies”. (ibid:4) The book is divided into four parts, each one taking on a “fundamental task” in disability studies – enabling theory, autobiographical subjects, rehabilitating representation and enabling pedagogy.
This is an ambitious project and not all together successful due to it being an edited collection of varying quality. The theory section deals mainly with cultural theory and disability. David Mitchell’s article Narrative Prosthesis and the Materiality of Metaphor Literature and the Undisciplined Body of Disability takes a deconstructionist approach, making the case that disability has been used throughout history as a “narrative prosthesis” – a literary device for “things gone awry”. Mitchell asserts that the cumulative cultural metaphor has a sustained impact on cultural attitudes more widely, and thereby affects the disabling processes that people with impairments seek to negotiate (Mitchell 2002) Yet these claims, however persuasively made, are assertions, as the methods of literary analysis that Mitchell employs do not require him to empirically test his claims with audiences of either disabled or non-disabled people.
Mitchell’s work has been very instructive, pointing to the systematic discursive representation of disability, and its pervasive and recurrent presence in wider narrating of social relations. His impact is most strongly evident in other areas of literary studies, while Snyder’s work seeks to demonstrate how “significations of disability alter key directions in figurative possibilities”(Snyder 2002). She concludes by arguing that it is not the representation of disability that is of central interest, but rather how disabled people see, read and understand the cultures in which they live – and their perspectives are critical to an effective examination of the social order (ibid:194). These perspectives are best grasped through the cultural products of a society.
Jeffreys’ piece on The Visible Cripple (Jeffreys 2002) proposes something further – that all cultural products are deceiving, and that the role of the analyst is to undercover the deceptions. “Cultural constructivism” as the dominant epistemology of the contemporary era works to get underneath the surface appearances, and thereby reveal the processes in language that sustain stigmatization and exclusion. Yet he also acknowledges that the impaired body is more than just a cultural construct, and it has to be incorporated into a natural/cultural synthesis. At this point he stops, leaving the task chimerically before us.
Siebers’ chapter, Tender Organs, Narcissism, and Identity Politics,(Siebers 2002) goes to the heart of the fundamental strand in the US tradition – the individualisation of the social – evidenced by the use of the personal narrative often detached from the wider politic. “My primary goal here is to probe the metapsychology supporting the accusation of narcissism (of people with disabilities) and to show how it relies on the idea of disability itself.41” Unlike in Britain and Australia, disability studies theorists in the US have been quite fiercely accused as being yet another politically correct group of self-serving individuals. Siebers quotes Camille Paglia, the post-feminist known for her attacks on feminism, who describes disability studies as “the ultimate self-sanctifying boondoggle for victim-obsessed academic careerists” (ibid: 41). Because so much weight is given to individual remedies within the US system, Siebers argues that, “In short, political action is based on the individualization of disability.” (ibid: 49), but that the attack on disabled people as self-interested individuals has prevented political action. That is, the process that requires individuals to have a “case” for action, leads to a charge of narcissism by neo-conservatives, and thereby undermines the social movement that might be built on the social awareness of individual issues.
The Afterword (Berube 2002) looks to the lessons of disability studies, and argues there is a dual focus – the body as material artifact (and the diversity that it can take, not the British idea of impairment), and the body as social construction (ibid :342). Thus rather than ignoring the impairment/social dichotomy of the British school, the American literature transcends the dichotomy by centralising difference as a value – the human body can appear in many forms, and it is implicitly a political act to describe some of these as ‘impaired’ as compared to ‘normal’.
Disability refers thus both to the individual’s body, and the social categorisation of difference and thereby the de-individualisation of individual difference. The argument here goes to the question of the links between cultural representation and civil rights, between images of difference and social justice (see (Meekosha and Jakubowicz 1996). Thus cultural struggles about disability are fundamentally political questions.
The US book contains a number of other examples of the identity politics focus that I would argue typifies the American scene – both in terms of social movement activities and the not-unrelated development of disability studies. The spectacle as a central process in the social world, with disabled people as actors voicing their own narratives, as spectators of those who use disability for their own purposes, and as the inspected for the wider society and its biocultural hierarchy, characterises then the American engagement with disability studies. “Culture as spectacle” stands far however from the British scene, to which I now turn.
The UK tradition
British disability studies reflects the close relation between sociology, social policy and the politics of the welfare state in Britain. Disability studies has been seen as a terrain of social change, constantly seeking the interaction between theory and practice. The early projects were concerned with professional practice issues, such as Mike Oliver’s 1982 Open University text Disablement in Society, and his British Association of Social Workers’ text 1983 Social Work with Disabled People. While in the USA the disability movement was able to achieve its goals for national political recognition of the issues involved in individual, social and economic participation through the Americans with Disabilities Act 1990, the British movement was constantly thwarted by a Conservative government that simply refused to act on its demands (Meekosha and Jakubowicz 1999).
The British debates were thus directed more strongly towards the social model, and the tensions between disability experiences and state provision. Disability and Society (D and S) the main journal in Britain, reflects this focus. While there is some cross-over between the D and S and DSQ in terms of publishing contributions from authors outside the country of publication, D and S rarely addresses the more cultural and literary topics that regularly appear in DSQ – on the other hand, DSQ regularly accepts contributions from the ‘social model’ school.
Case Study: Disability Studies Today (2002)
Barnes, Oliver, and Barton (2002) have been described as the founding fathers of British disability studies – all three professors of disability studies or disability in education. Over the past twenty years they have been the most sustained proponents of a materialist vision of disability studies, arguing in many publications for a structural basis to disability discrimination. A structural approach concentrates on the disabling process, given form as ‘the social model’. This collection contains many veiled and unveiled critiques of the ‘American approach’ (ibid:7) which, they suggest fails to distinguish the impairments of the body from the social relations of disability. For the editorial triumvirate the ‘social model’ is the sine qua non of disability studies, and while they accept the emerging critiques of its rather determinist and dogmatic implications, they defend the space they feel is under attack from non-materialist cultural studies.
The twelve substantive chapters by writers primarily (though not only) from Britain, chart the flow of the debate about disability studies and its evolution into a mature field of research and theory. Interestingly, the editors place Gary Albrecht’s (an American) critique of American ‘pragmatism’ at the front of the book, thereby marking the space from which they are moving (Albrecht 2002). Albrecht claims that the Americans ‘have been characterised by a general lack of historical sensibility and a disconcerting insularity’ (33), yet a similar claim is made in the book (Borsay 2002) about the failure of British disability studies to have any historical dimension in its empirical work. As an academic in Australia involved in disability studies in the Asia-Pacific region, I can only say that the insularity of British disability debates should not be overlooked.
This having been said, the argument that is developed through the collection is strengthened by British critiques of the more simplistic social model – especially when undertaken by theorists whose approaches are instructed by feminism. Thomas for instance examines the dynamics of social exclusion, demonstrating the reinforcing interplay of social and cultural processes on the exclusion of disabled people. She moves beyond the more Marxist influenced earlier arguments of Oliver et al., to propose the incorporation of the psycho-emotional dimensions of disability into the theorisation of disability relations (Thomas 2002).
The introduction of the body then becomes the focus for Hughes’ chapter(Hughes 2002). He argues (as indeed has Thomas in passing) that the sociology of the body (which rarely deals with disability) has to be engaged by disability studies. The body -as a feeling, joyful, painful, biological thing – has been suppressed by disability studies in the social model. The suppression reflects two dynamics – the critique of medical and individual pathology models of the disabled self; and the fear that the body in question will re-emerge as the focus of social policy at the cost of the hard-won societal commitment to overcoming discrimination. This valuable insight however becomes somewhat confused by the concept that the current moment offers a point of intersection – where society is somatic, ‘disability embodied, and impairment social’ (ibid: 73). Hughes (despite appearing unaware of the feminist and cultural studies literature on the body (Meekosha 1998)) suggests that the sociology of impairment can engage with the sociology of the body to produce a re-modelled theory of the body that incorporates impairment as one of its dimensions.
The penultimate chapter (Mercer 2002)explores the emancipatory potential of disability research, where the practice of research is seen as part of a political process for empowering people with disabilities. This empowerment might lie in their contribution to defining the parameters of the research, in destablising the taken-for-granted verities of non-disabled researchers, and in undertaking the research themselves.
While other chapters address the global and trans-cultural scene, the editors focus in their final intervention on the future of disability studies in the academy – particularly relevant for this colloquium. They are concerned that the discipline of disability studies within the academy should sustain its relationship with the disability movement and disabled people, and thus they wish to identify its increasingly problematic features. Universities are becoming sites of cultural battles, over identity, approach, and ideology – as we can see in the current debates over the meaning of Indigenous history in Australia.
The editors see danger in the separation of the movement from the discipline, generated by the increasing ‘inward’ looking tendency in disability studies, a concern for personal identity rather than social change. Yet they do not feel that this tendency can be overcome by re-asserting an more objective social science stand – rather they endorse a proposal that the academy now has a critical role to play in enlarging the public sphere and contribute to building a more vigorous social citizenship (Barnes, Oliver et al. 2002). This approach is valuable, yet there is no clear indication as to how such moves might be implemented – especially in a climate where disabled students and academics experience increasing marginalisation and stress. This marginalisation is exacerbated by the pressures on universities produced by intensified economic rationalism.
This comparison of the two national traditions indicates the close link between national political culture, national political institutions and national scholarly orientations. While not wishing to imply a culturally determinist trajectory , and recognising the cross fertilisation that does exist across the Atlantic, nevertheless the cutting edge of disability studies needs to move beyond the boundaries that seem to exist. These competing metropoles have failed to incorporate either the peripheries or the developing world. Post-colonial societies and those where English is not the national language have been forced to build local models of disability that draw on the British and North American traditions. Yet they have been able to move beyond these perspectives, examining the implications of being post-colonial or settler societies, societies with Asian traditions and values, or societies with strong social justice frameworks caught in a globalising world.
The trans-Atlantic conversation remains important, yet it is insufficient for an effective global disability studies project. As I have suggested elsewhere, cultural, economic and social relations are all implicated in both enabling and disabling citizenry(Meekosha and Dowse 1997). Scholars from the periphery find it difficult to participate in the major first world academic conferences and events – yet their perspectives are crucial to understand the broad system. At a time the UN is considering an international convention on the rights of people with disabilities, it is significant that major support is coming from governments in the developing world while the USA, China and Australia are amongst the few nations offering resistance.
In Australia the field of Disability Studies has been influenced by both the British and American traditions, yet neither are of major help in examining issues such as the almost totally unexplored space of Indigenous disability. It is in this space that impairment, illness, disease, poverty, gender relations, cultural devastation and economic under-development intersect to produce endemically disabling conditions affecting the vast majority of the Indigenous community. New paradigms are required that can encompass the complex interweaving of these issues – an inter-disciplinarity that engages with the post-colonial web in a systematic, responsive and respectful way. In this situation the melding of the British social model and the American symbolic focus offer a starting off point for collaboration with Indigenous knowledge.
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