Re-Presenting Disability

Activism and Agency in the Museum

Richard Sandell, Jocelyn Dodd, Rosemarie Garland-Thomson, Richard Sandell, Jocelyn Dodd, Rosemarie Garland-Thomson

• Publisher: Routledge
• Year: 2013
• ISBN:
  9781136616471
• Edition: 1
• Topic: Betriebswirtschaft
• Subtopic: Museumsverwaltung

Re-Presenting Disability addresses issues surrounding disability representation in museums and galleries, a topic which is receiving much academic attention and is becoming an increasingly pressing issue for practitioners working in wide-ranging museums and related cultural organisations.

This volume of provocative and timely contributions, brings together twenty researchers, practitioners and academics from different disciplinary, institutional and cultural contexts to explore issues surrounding the cultural representation of disabled people and, more particularly, the inclusion (as well as the marked absence) of disability-related narratives in museum and gallery displays. The diverse perspectives featured in the book offer fresh ways of interrogating and understanding contemporary representational practices as well as illuminating existing, related debates concerning identity politics, social agency and organisational purposes and responsibilities, which have considerable currency within museums and museum studies.

Re-Presenting Disability explores such issues as:

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• In what ways have disabled people and disability-related topics historically been represented in the collections and displays of museums and galleries? How can newly emerging representational forms and practices be viewed in relation to these historical approaches?

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• How do emerging trends in museum practice – designed to counter prejudiced, stereotypical representations of disabled people – relate to broader developments in disability rights, debates in disability studies, as well as shifting interpretive practices in public history and mass media?

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• What approaches can be deployed to mine and interrogate existing collections in order to investigate histories of disability and disabled people and to identify material evidence that might be marshalled to play a part in countering prejudice? What are the implications of these developments for contemporary collecting?

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• How might such purposive displays be created and what dilemmas and challenges are curators, educators, designers and other actors in the exhibition-making process, likely to encounter along the way?

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• How do audiences – disabled and non-disabled – respond to and engage with interpretive interventions designed to confront, undercut or reshape dominant regimes of representation that underpin and inform contemporary attitudes to disability?

Part I

NEW WAYS OF SEEING

1

ACTIVIST PRACTICE

Richard Sandell and Jocelyn Dodd

There has long been a sense within the disability rights movement and amongst disability scholars that representation matters; that public portrayals of disabled people have effects and consequences which – though slippery, diffuse and difficult to trace – are nevertheless ubiquitous and capable of powerfully shaping disabled people's lives in innumerable and very tangible ways.¹ Alongside struggles for employment and education rights, access to public services, political participation and so on, activists have, for more than two decades, argued that cultural representations are constitutive as well as reflective of ways of seeing, thinking and talking about disability (Gartner and Joe 1987; Hevey 1992; Oliver 1996). These predominantly negative and damaging conceptions have, in turn, shaped public policy, approaches to education, employment and welfare; they have framed interactions between disabled and non-disabled people and provided the justification for continuing forms of prejudice, discrimination and oppression.

Meanwhile in museums, a similar concern for the social and political effects of representation has emerged over recent decades and underpinned widespread shifts in practice towards the development of more inclusive processes of exhibition-making and the portrayal of diverse communities in more respectful and equitable ways (Bennett 2006; Sandell 2007). Practitioners have become increasingly concerned to include – in collections, exhibitions and displays – the histories, experiences and voices of communities that have tended to be marginalised from mainstream museum narratives although portrayals of disabled people have, until quite recently, remained markedly absent (Sandell et al. 2005).

This chapter examines the emergence of what might be termed an activist museum practice, intended to construct and elicit support amongst audiences (and other constituencies) for alternative, progressive ways of thinking about disability. We begin by highlighting the intersecting forces and concerns emanating from the arenas of disability studies, disability politics and rights activism that have helped to shape the production and circulation, in recent years, of a more protean range of images of disabled people in the public sphere. We then consider three particularly high-profile culturalrepresentations of disabled figures in the US and UK, embodied in highly visible public sculptures and statues – the aims and intentions behind their creation and the controversies that characterized their reception – to shed light upon the constitutive potential of public portrayals of disability. These portrayals, as we shall see, hold the capacity to provoke (and inform) strong opinions and to generate sometimes fierce media debates. Drawing on our experiences as action researchers – working in collaboration with disabled activists and artists to explore new approaches to representing disability – the last part of the chapter considers the challenges and opportunities posed by the staging of socially purposeful, interpretive interventions within museums and galleries. Here we highlight the challenges – moral, political and pragmatic – that museums have encountered in exploring this new territory and discuss the ways in which these might be addressed through ethically and politically informed approaches to representation, interpretation and audience engagement.

Representations and rights

Matters of representation are intricately bound up with the broader struggle for disability rights, perhaps even more so than for other civil and human rights movements. Central to the achievement of disability rights has been a desire to bring about a widespread and radical shift in the way disability is conceived – away from ‘the cultural assumption that disability is equated with dependency, invalidity and tragedy’, to ‘the political demand that dis-ability be defined […] in terms of social oppression, social relations and social barriers’ (Shakespeare 2006: 31). The conceptual drive behind this shift emerged in the late 1960s and gained momentum through the 1970s and 1980s in the form of politically progressive, social-contextual accounts of disability – developed by disabled people – that offered a radical critique of individualist and medicalised ways of seeing. As disability scholars Barnes, Mercer and Shakespeare explained:

By the beginning of the twentieth century, the individual approach to disability – which sees its diagnosis and solution in medical knowledge – was securely entrenched. The focus is on bodily ‘abnormality’, disorder or deficiency, and the way in which this in turn ‘causes’ some degree of ‘disability’ or functional limitation … This forms the basis for a ‘personal tragedy’ approach, where the individual is regarded as a victim, and as someone who is in need of ‘care and attention’, and dependent on others….

In developing what became known as a social approach to disability, disabled people in Britain argued that it is society which disables people with impairments, and therefore any meaningful solution must be directed at social change rather than individual adjustment and rehabilitation.

(1999: 21, 27)

As the rights movement gathered momentum, the dominance of portrayals in popular and news media that reflected individualized and medicalized conceptions of disability became an issue of growing concern for disability scholars. Activists became increasingly interested in challenging representations which operated to constrain the rights movement and in seeking to supplant them with alternative portrayals that subverted negative stereotypes and resisted the conception of disability as personal tragedy (Barnes and Mercer 2003; Oliver 1996).²

This concern for how disability has been portrayed – and the ways in which such portrayals can operate to reinforce and shape prejudice or conversely to foster more respectful and equitable understandings of difference – has underpinned a series of investigations and analyses of modes of representation across a range of media including film (Norden 1994), broadcast and news media (Barnes 1992), literature (Garland Thomson 1997) and charity advertising (Hevey 1992). These analyses have built a picture of what Stuart Hall (in his analysis of racialised representations in western popular culture) terms the ‘dominant regime of representation’. For Hall a regime of representation refers to ‘the whole repertoire of imagery and visual effects through which “difference” is represented at any one historical moment’ (1997: 232). A given regime may comprise protean, fluid and contradictory depictions of difference but, at particular historical moments, can also be understood to take on a prevailing character. As Jackie Gay argues:

Disabled people throughout the world are engaged with a long and complicated struggle with the way we are portrayed and the meanings attached to these portrayals that include disability as stigma, as a sign of a damaged soul, as being less than human, as dependent, weak, sexless, valueless.

(Gay with Fraser 2008: 21)

Victims, villains, freaks and heroes

A number of common strands and themes emerge from these wide ranging analyses of representational systems and meanings. More than twenty years ago Alan Gartner and Tom Joe, for example, highlighted the historical ubiquity of ‘disabling images’ which function to dehumanize disabled people:

Images of the disabled as either less or more than merely human can be found throughout recorded history. There is the blind soothsayer of ancient Greece, the early Christian belief in demonic possession of the insane, the persistent theme in Judeo-Christian tradition that disability signifies a special relationship with God. The disabled are blessed or damned but never quite human.

(1987: 2)

A number of studies have also highlighted the prevalence of images which emphasize specific physical differences at the expense of all other traits and which function to construct some disabled individuals as the extreme Others, generally perceived to be beyond the range of ordinary human appearance. This process, which David Hevey has referred to as ‘enfreakment’, is not solely confined to the freakshows that flourished in the late nineteenth century, in which individuals perceived to possess unusual or inexplicable bodies performed for and were stared at by the paying public, but has been found in literature, popular culture and, in Hevey's own study, in charity advertising. Alongside and frequently interwoven with the images that dehumanise and enfreak are a series of recurring negative stereotypes – the disabled person as pitiable, pathetic, dependent and vulnerable; as evil, criminal or otherwise villainous; as sexless or sexually deviant. These pervasive modes of depiction have been found in studies of wide ranging media in the UK, US and beyond (Barnes 1992; Gartner and Joe 1987).

Alternative frames and narratives

As human rights discourses have gained increasing global influence, as the politics of difference has brought about greater sensitivity over depictions of a range of minorities, and as the disability rights movement has gathered momentum, so these pernicious stereotypes have become less publicly acceptable and widespread (though, in some settings, remarkably persistent). At the same time, however, some have argued that the sensibilities that led to the demise of images that overtly associate disability with tragedy, pity, villainy and deviance have paved the way for alternatives that – while they may be welcomed by contemporary mainstream audiences – have done little to lend support to the reconceptualization of disability fought for by the disability rights movement. Charles Riley II, in his analysis of popular media in the USA, for example, argues that contemporary news stories very often continue to construct disabled people through a narrow set of clichéd roles, but ones which foreground heroism and bravery as individuals strive towards ‘a quality of life that is less disabled, more normal’ (2005: x). These damaging depictions, he suggests, function to reassure, to inspire pity and condescending admiration, while reinforcing a sense of superiority amongst non-disabled audiences.

Recent years, then, have seen an unravelling of the regime of representation that has been understood to dominate and govern cultural portrayals of disabled people and to construct and foster discriminatory ways of understanding disability (Barnes and Mercer 2003: 98). While it would be inaccurate to suggest that disability narratives have been wholly transformed – that negatively stereotypical images have been replaced with images that disabled people have uniformly welcomed – the repertoire of images and the representations that circulate in the first part of the twenty-first century are undeniably more protean and nuanced in their portrayals than those which have tended to predominate in the past (Garland-Thomson, this volume). These diverse depictions present a more complex narrative of difference and, though welcomed by many, have very often generated fierce controversies which throw into relief the different values, priorities and perspectives underpinning alternative ways of understanding disability.

In this next part of the chapter we consider the controversies that accompanied the unveiling of three very different cultural representations of disabled figures in the UK and USA, each revealing of the ways in which portrayals in the public sphere operate to provoke, frame and inform conversations about difference (Sandell 2007). Moreover, the controversies evoke the climate surrounding disability politics at the start of the twenty-first century and the character of the debates with which the museums, to which we turn shortly, sought to engage.

The President, the artist and the prime minister

In 2001 a new ‘room’ was added to the Franklin Delano Roosevelt memorial in Washington DC which featured a bronze statue of the President using his wheelchair. Four years later, Marc Quinn's sculpture of the artist and disabled woman – entitled Alison Lapper Pregnant – was unveiled in London's Trafalgar Square. The following year, in March 2006, a statue of Winston Churchill, depicting the British prime minister in a straitjacket, was put on display in Norwich, England. These very different public representations of real disabled individuals were, of course, conceived, commissioned, produced, viewed and debated in very different contexts and circumstances. Nevertheless, there are marked similarities in the ways in which those responsible for bringing these statues and sculptures to fruition articulated their underlying motivations and intentions. Perhaps more significantly, there are similarities evident in the ways in which different constituencies have responded to these cultural interventions and the character of the media controversies that each generated.

‘A nod to political correctness’

Controversy surrounding the FDR memorial began even before the dedication ceremony held on 2 May 1997. Rosemarie Garland Thomson describes the views of disability rights activists and disability studies scholars at that time:

[We] had wanted to avoid repeating the persistent stereotypes of disability – the ones that tell us that disability is a shameful personal problem relegated to the private realm of charity and medicine, but inappropriate in the public sphere. We had wanted the memorial to tell the story of a man who was both disabled by polio and president of the United States for 12 years. … But the only statue that even remotely referred to FDR's disability showed him seated, covered by a cape, on a chair with small wheels barely peeking out.

(2001: B11)

Those who were critical of the original memorial argued that decisions regarding the manner in which the President would be represented should be informed, not by the social ...