Our November 2021 meeting of LMCC took place on Wed. Nov. 17 at 5:30pm est via Zoom. We discussed Re-Presenting Disability: Activism and Agency in the Museum, edited by Richard Sandell, Jocelyn Dodd, and Rosemarie Garland-Thomson (2010). Specifically, we’d discussed:
- Chapter 1: “Activist Practice” by Richard Sandell and Jocelyn Dodd (3-22)
- Chapter 10: “Histories of Disability and Medicine: Reconciling Historical Narratives and Contemporary Values” by Julie Anderson and Lisa O’Sullivan (143-154)
If you missed the meeting, you can still access the text on the Readings page of this site!
For a recording of our virtual meeting, click here.
This was our final meeting of the semester, but our first meeting of Spring 2022 is tentatively scheduled for Wed. Jan. 26 at 5:30pm est. We tentatively plan to continue holding next semester’s LMCC meetings at 5:30pm est on the last Wednesday of each month, via Zoom using the same link we’ve been using.
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Selections from Re-Presenting Disability: Activism and Agency in the Museum (Routledge, 2010), edited by Richard Sandell, Jocelyn Dodd, and Rosemarie Garland-Thomson:
Sandell, Richard and Jocelyn Dodd. “Activist Practice.” Re-Presenting Disability: Activism and Agency in the Museum, edited by Richard Sandell, Jocelyn Dodd, and Rosemarie Garland-Thomson. Routledge, 2010, pp. 3-22.
Anderson, Julie and Lisa O’Sullivan. “Histories of Disability and Medicine: Reconciling Historical Narratives and Contemporary Values.” Re-Presenting Disability: Activism and Agency in the Museum, edited by Richard Sandell, Jocelyn Dodd, and Rosemarie Garland-Thomson. Routledge, 2010, pp. 143-154.
Some key passages:
Ch. 1: “Activist Practice” (Sandell and Dodd)
“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 tum, 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” (Sandell and Dodd 3).
“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” (Sandell and Dodd 3).
“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 disability be defined […] in terms of social oppression, social relations and social barriers’ (Shakespeare 2006: 31)” (Sandell and Dodd 4).
“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” (Sandell and Dodd 4).
Paraphrase from Sandell and Dodd 4-5: It is not a tragedy that causes someone to be “disabled”; society disables people, so any solution has to involve social change rather than just individual adjustment and rehab.
“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” (Sandell and Dodd 6).
“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” (Sandell and Dodd 6).
“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…. These damaging depictions, he [Charles Riley II] suggests, function to reassure, to inspire pity and condescending admiration, while reinforcing a sense of superiority amongst non-disabled audiences” (Sandell and Dodd 6).
“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” (Sandell and Dodd 7).
“The critics, in their eagerness to distinguish between their views of the sculpture and their views of Alison Lapper, arguably reveal more about their personal (as well as prevailing social) attitudes to physical difference than they might acknowledge” (Sandell and Dodd 9).
“The artists, activists, scholars, commissioning bodies, and politicians behind the sculptures and memorials that eventually appeared in Washington DC, Trafalgar Square and Norwich, expressed (albeit in different ways) their desire to counter, contest or subvert entrenched negative ways of seeing disability. Despite the socially purposeful ambitions with which each of the works was imbued (and in some instances, perhaps because of the explicitly social messages they were perceived to embody), the responses they inspired were far from consensual. Whilst many responses reflected support for new ways of seeing, many expressed fiercely opposing views. This variety in response is unsurprising” (Sandell and Dodd 10).
“As part of a broader drive towards the development of new (traditionally excluded) audiences, and spurred on by government policy and new equality legislation, museums have (with varying levels of commitment and success) explored ways of making their buildings and programmes more accessible to disabled people” (Sandell and Dodd 10).
“Disability, then, has been narrowly associated with visitation and attention has been focused on enhancing physical (and, to a lesser extent, sensory) access for disabled visitors. Interestingly, initiatives designed to engage other groups traditionally under-represented in museums’ visitor profiles—notably minority ethnic communities—have often centred around the programming of events and exhibitions that reflect the histories, interests and contemporary lives of the target audience. Indeed the trend towards more inclusive practice has resulted in a proliferation of initiatives—oral and hidden history projects, contemporary collecting and so on—designed to better reflect community diversity within museums’ narrative repertoires and, in turn, to increase levels of visitation amongst under-represented groups. For disabled audiences, however, a preoccupation with access has, it seems, paradoxically obscured the possibility of disability-themed content within exhibitions and displays” (Sandell and Dodd 10-11).
“While a few notable exceptions had developed displays which included wide ranging experiences of disability and presented varied roles (historical and contemporary) enacted by disabled people, most museum narratives omitted disability-related material; failed to make an object’s link co disability history explicit in interpretation; or presented material in ways which conformed co stereotypical and reductive representations of disabled people commonplace in other media (ibid.) [Sandell et al. 2005: 15]” (Sandell and Dodd 12).
“Many [members of museum staff] cited a fear of causing offence to disabled people, for example, by inappropriately drawing attention to or stigmatizing difference or by using language which might be judged disrespectful or outdated. Some were anxious to avoid creating settings which might be seen to encourage or permit unwelcome visitor behaviours (staring, ridiculing) or which might provoke shock, distress or discomfort…. How could the invisibility of disabled people be addressed without recreating inappropriate forms looking reminiscent of the freakshow? Should an exhibition identify as disabled an historical figure who, in their own time, went to great lengths to conceal their impairment? Should the ‘difficult stories’ of disability—those pertaining to war injury and mutilation, freakshows, eugenics, histories of institutionalization and segregation—be explored in addition to celebratory and inclusive narratives?” (Sandell and Dodd 12).
“RCMG [Research Centre for Museums and Galleries] subsequently developed a large-scale, multi-partner action research project designed to explore and evaluate new approaches to portraying disabled people in museums and galleries. Rethinking Disability Representation, which ran between 2006 and 2009, created nine experimental interventions in museums across England and Scotland which, though tremendously diverse in content, theming and interpretive approach, were nevertheless linked by a shared aim. Each of the nine participating museums worked with the research team and, crucially, a ‘think tank’ of disabled activists, artists and cultural practitioners, to construct a series of socially purposeful narratives—framed by the social model of disability—that could offer audiences new, progressive ways of seeing and frame the ways in which visitors engaged with and participated in disability rights-related debates” (Sandell and Dodd 13).
“Together the nine projects sought to counter stereotypes by presenting richly textured and nuanced accounts of disability experience; highlight and to interrogate historical and contemporary modes of discrimination and oppression; and to unsettle visitors’ preconceptions in ways which were designed to facilitate new understandings. The process of creating these purposefully framed interpretive interventions revealed a series of challenges; some specific to the theme of disability representation but others which concerned, more broadly, the dilemmas presented by attempts in museums to engage with a range of contemporary (often contested) moral and social issues” (Sandell and Dodd 14).
Activism and activist practice: “Although the term activism has many connotations it can be understood, in the broadest sense, to refer to a set of actions designed to bring about social change, often in relation to an issue which is characterized by moral, social or political contestation. Activist practice, then, may take many forms but must inevitably entail the adoption of a particular moral standpoint in relation to issues that frequently hold the capacity to generate fiercely opposing views” (Sandell and Dodd 14).
“The practice of exhibition-making, for many curators, involves actively avoiding the adoption of moral positions which lay the institution open to accusations of bias or of inappropriately taking up the role of advocate for a specific cause. Although there is increasing professional acceptance of the inherently political character of all museum displays, the desire for impartiality and balance remains powerful” (Sandell and Dodd 15).
“Trends in museum communication and learning in recent decades have seen a move away from a behaviourist, transmission model—which views knowledge as transferred from museum to visitor in a straightforward, linear and unidirectional manner—towards constructivist approaches which acknowledge the visitor’s active role in the construction of meaning…. How then could unequivocal support for social-contextual, progressive ways of thinking about disability—embodied in the social model—be combined with approaches to interpretation and visitor engagement that could resist ‘moralising didacticism’ (Sandell 2007: 196) and instead open up rather than close off multiple possibilities for visitors to engage?” (Sandell and Dodd 15-16).
“The interpretive approach that proved most helpful in capturing complexity and conveying the diversity of perspectives that characterize contemporary disability communities (Snyder and Mitchell 2006: 176) was the presentation of disabled people’s own voices, opinions and experiences, sometimes alongside (and, very often, in place of) the mediating curatorial voice of the museum. The significance of these authentic modes of storytelling for enabling visitors to construct new meanings around disability was also revealed during the in-depth evaluation across each of the nine projects” (Sandell and Dodd 16).
“Research suggests that while audiences are undoubtedly highly active in the process of constructing meaning out of their visit, their responses and modes of engagement are nevertheless framed and informed by the museum and the moral standpoints it is perceived to embody” (Sandell and Dodd 20).
“Ultimately the projects that comprised Rethinking Disability Representation evolved in ways that sought not to offer prescriptive, fixed and didactic ways of seeing but rather to engage visitors in a dialogue and debate about disability and social justice. At the same time, the use of the social model of disability—as both moral compass and interpretive guide—was an attempt to set parameters around the meanings that visitors might make out of their encounter; to establish the moral coordinates within which the debates between and amongst visitors could occur” (Sandell and Dodd 20).
“Museums, we conclude, might most appropriately be understood not as sites of moral coercion but rather as learning environments in which infinitely diverse meanings can be constructed; but meanings which are generated out of engagement with a set of credible, authentic and ethically informed interpretive resources. This conception of the museum may do little to reassure practitioners anxious about the implications of lending support to a particular moral standpoint but, in response, we would point out that there is no neutral position. Just as visitors will create meanings out of the purposeful interpretations they encounter, they will also draw conclusions from the marked absences, awkward silences and skewed representations surrounding disability that they currently find in most museums” (Sandell and Dodd 20-21).
Ch. 10: “Histories of Disability and Medicine: Reconciling Historical Narratives and Contemporary Values” (Anderson and O’Sullivan)
“Museums of science often perform a dual role. They attempt to make sense of the past, offering audiences a unique way to view and understand objects relating to the history of science. At the same time, many are also places in which visitors can discover more about new directions in scientific research and explore complex social and political issues surrounding contemporary science. This dual role can sometimes generate tensions and interpretive and ethical challenges to which this chapter speaks” (Anderson and O’Sullivan 143).
“In March 2009, the Science Museum in London launched a major online educational resource, Brought to Life: Exploring the History of Medicine [http://www.sciencemuseum.org.uk/broughttolife]. The website, primarily designed for teachers and students working on the history of medicine and related subjects in secondary schools and universities, provides access to a huge array of images of objects from the Museum’s extraordinary medical collections, accompanied by detailed descriptions and introductions to major themes in the history of medicine. Although designed with users from formal educational settings in mind, the website also aims to appeal to broader interested audiences through a variety of engaging media” (Anderson and O’Sullivan 143).
“The web offers new possibilities for access with technologies to ensure that a site is available to as many users as possible. From a content perspective, the Museum’s [the Science Museum in London] collections offered a chance to include objects which could be interpreted (or, indeed, reinterpreted) with questions pertaining to the relationships between medicine and illness, impairment, disability and health. However, in the context of contemporary disability politics both in the UK and beyond, the use of medical history as a means to shed light on disability brings with it inherent tensions. This chapter will explore these particular tensions and examine how they were played out in the development of the Science Museum’s online educational resource. It will address a series of questions that are pertinent not only to museums of science but also to wide ranging institutions that have collections linked to medical practices. What understandings of disability are created by the medical gaze? To what extent are museums concerned with histories of medicine able to create spaces for alternative and personalized understandings of disability? How can respect for contemporary ideas about disability, identity and agency be balanced with museological and historiographical concerns for representing the past in accurate and truthful ways?” (Anderson and O’Sullivan 144).
“Museum practice over recent decades has moved away from the presentation of didactic ‘facts’—an approach which has tended to position visitors as passive consumers rather than active participants—towards the inclusion of multiple viewpoints and interpretive devices designed to encourage individual interpretations and responses” (Anderson and O’Sullivan 144).
“Contemporary museum practice in interpreting the history of science is increasingly concerned to address the internal and external drivers and policies which have always characterized the practice of science and, in particular, the nature of scientific controversy. These trends have influenced museums’ attempts to portray the history of medicine by making explicit the issues and contestation surrounding the ethics and nature of medical practice. Museums of science have been increasingly compelled to examine these controversies through a range of exhibitions and other media” (Anderson and O’Sullivan 144-145).
“Through their presentation of multiple interpretations, museums are effectively seeking to guide visitors who are attempting to understand complex concepts or histories, towards a more active interpretive role. This goal of allowing freedom or agency in interpretation is often mediated by the simultaneous attempt to convey a message, or set of messages, with specific sociopolitical goals” (Anderson and O’Sullivan 145).
“The history of medicine emerged as an academic discipline largely written by and about medical professionals. As such, narratives pertaining to disability tended to highlight the role and agency of the medical practitioner rather than the disabled person and focused on individuals being cured or overcoming their impairment, often while under the care of a benevolent doctor” (Anderson and O’Sullivan 145).
“For the medical profession, disability has essentially been viewed as a failure of medical intervention—an inability to completely cure a person to a state of ‘wellness’. Hence, the medical profession has come to be criticized, particularly within the field of disability studies, for pathologizing disabled people as physically or psychologically lacking and for identifying individuals within medicine and in society more broadly, primarily—if not exclusively—in terms of their impairment or condition” (Anderson and O’Sullivan 146).
“An alternative view of disability, that has come to be widely known as the social model, subsequently emerged. The social model, which Hasler (1993) has described as ‘the big idea’ of the disability movement and which continues to underpin contemporary disability activism in the UK, ‘shifts attention from individuals and their physical or mental deficits to the ways in which society includes or excludes them’” (Anderson and O’Sullivan 146).
“Disability academic and activist Tom Shakespeare, while recognizing the continuing value of social approaches in advancing disability equality, has pointed out that the construction of a stark dichotomy between the medical and social models is, in many ways, reductive and limited in terms of its explanatory power partly because it allows disability studies to sideline issues surrounding the relationships between disability and impairment, pain, illness and suffering” (Anderson and O’Sullivan 146-147).
“In fact, both models are primarily contemporary in their focus. We would therefore argue that new approaches in social and cultural medicine, which are sensitive to power dynamics and inequalities, agency and patient-practitioner interactions, offer a useful and nuanced way to capture the embodied experience of disabled people and their interactions with the objectifying medical gaze” (Anderson and O’Sullivan 147).
“Like many in disability studies, Delin argues that this tendency to equate disability with its medical technologies—rather than any other aspect of a disabled person’s life—is evidence of a tendency towards a medicalized vision of disability. Yet, as for any group of individuals, the physical artifacts with which disabled people have interacted are an important trace of their life experience. For a medical collection and indeed medical history, they bear witness to the relationship of disabled people with the medical profession, its technologies and its beliefs. The focus on technologies of enablement, such as prostheses for example, is not necessarily one which attempts to disregard the individual experience of disability. Rather, it reflects the material focus of museum collecting. Moreover, as curators know, it is through the stories that can be told about objects that they become meaningful. The documentation of the ‘life’ of an artifact is also
that of the life of its user(s). Individuals have relationships with their prostheses that are often intimate and enduring. The collection of memories and the turn towards oral histories therefore enriches the possibilities presented by artifacts in isolation” (Anderson and O’Sullivan 147-148).
“While the [prosthetic] leg is the material trace left in the museum collection, this should not be read as implying that the object’s material presence has been taken as defining its user. Rather its interest lies in the meanings imposed on it by its user, highlighting the need to continue to preserve the multiple stories that come with objects” (Anderson and O’Sullivan 148).
“We would argue that it is possible for museums to display and interpret items of a medical nature and depict and interpret their association with disabled people while still being mindful of the institutions’ social and ethical responsibilities. For instance, how might historical photographs of disfigurements showing progressive reconstructions of the face be displayed and interpreted in ways which remain sensitive to contemporary values?… Museums, we would argue, provide a unique space in which these medical and scientific conventions—and their impacts on individuals—might be made explicit and explored” (Anderson and O’Sullivan 148-149).
The imperative to tell formerly “untold” stories: “Such new stories have been part of a broader drive towards museums becoming inclusive spaces with the capacity to drive social change and counter prejudice. Within this context, the desire for celebratory narratives which foreground stories that can serve to counter negative stereotypes can be at odds with the realities of the past. This tension is not unique to the telling of stories about disabled people—the same unease is evident in museums’ attempt to deal with issues of slavery, warfare and to reveal other ‘hidden histories’ linked to minority identities” (Anderson and O’Sullivan 149).
“One of the fundamental concerns surrounding the representation of disability in the context of medical history is that of language. Many historical medical terms used to describe disability and disabled people have unarguably been dehumanizing. Museums therefore must be mindful of the terms that they use and attempt to avoid the use of language which perpetuates approaches to disability which today are viewed as demeaning and oppressive. Yet, it does not inevitably follow that the language of the past should be completely avoided” (Anderson and O’Sullivan 150).
“For instance, during the development of Brought to Life, medical curators at the Science Museum were surprised by negative (contemporary) reactions to the use of historically accurate names to describe institutions such as the Cripples Hospital, Lunatic Asylums, or the use of terms such as leper, insane or mad. These emerged as problematic since such terminology was viewed by some contemporary users as perpetuating outmoded language and hence legitimating the attitudes perceived to be associated with it, as opposed to a careful attempt to represent both historically accurate categories, and the meanings attached to them in context. Indeed, working within the dichotomy of the medical/social models, such terminology is often assumed to be imposed on disabled people by external actors. However, the use of specific language can also arise out of the agency of disabled people themselves and preferences they and their carers express” (Anderson and O’Sullivan 150).
“Museums, Sandell has argued, ‘must consider their impact on society and seek to shape that impact through practice that is based on contemporary values’ (2002: 21). The challenge then for the historian and curator is to mediate between these contemporary values and the depiction of accurate historical representation. There is a danger that attempts by curators to avoid confrontation or distress to visitors may act to distort the realities of the past and, in doing so, blunt our awareness of the experience of historical actors—effectively removing a sense of their agency” (Anderson and O’Sullivan 150-151).
“We would argue that, despite—or perhaps because of—contemporary sensitivities, it is important for museums to give visitors an historical understanding of the ways in which both medical practitioners, and society more broadly, viewed and created disabled people. To dissociate disabled people from the terminology used to describe them in the past is to rob them of their historical construction—in essence de-historicize them. Part of the historical identity of many disabled individuals is the nature of language used to understand, describe and, in many cases, remove some of their agency from them” (Anderson and O’Sullivan 151).
“It is not necessarily wrong for people in different historical times to understand events and people in ways which differ from contemporary constructs. However, there has been a tendency within some disability studies to present a Whiggish sense of history, in which respect and sensitivity towards difference in various past times is measured against the present—and invariably found wanting” (Anderson and O’Sullivan 151).
“For the historian, the priority is to describe the experience of those in the past, and it is precisely the historical disenfranchisement of disabled people that needs to be highlighted” (Anderson and O’Sullivan 152).
“The term ‘disability’ encompasses a wide range of experiences and circumstances. It cuts across a wide range of historical time frames and contingencies and the experience of disability can be permanent or temporary. Indeed, there is a rich vein of potential research to be undertaken which
examines how the experience of disability has been shaped by other (nonmedical) factors such as gender, class, or the social meanings attached to a particular impairment or condition in a particular historical time and place” (Anderson and O’Sullivan 152).
In contrast to focusing on the dialectic between the social model and the medical model of disability: “Far more fruitful was the process of engaging with questions of disability, illness and health as culturally and historically contingent—an approach which enabled an understanding of the agency (or disempowerment) of those individuals who were subject to medical attention as mediated by an array of different factors” (Anderson and O’Sullivan 152).