During the past twenty years the understanding of representations, subjectivities, and societies has been transformed by the proliferation of cultural studies, human rights discourses, activist practices, and interdisciplinary fields. Re-Presenting Disability: Activism and Agency in the Museum makes an important contribution to each of these areas in its integration of disability studies with museum studies. Editors Richard Sandell, Jocelyn Dodd, and Rosemarie Garland-Thomson have assembled a volume intended to not only raise theoretical questions, but to serve as a catalyst for change and reform. The vigorous activist agenda of the collection is refreshing, and appropriate, given the subject matter and the fact that such concerns have been, for the most part, overlooked until relatively recently by curators, artists, critics, gallerists, and art historians. Organized into three areas of inquiry, “New Ways of Seeing,” “Interpretive Journeys and Experiments,” and “Unsettling Practices,” the book offers provocative analysis, as well as documentation of recent artworks, exhibitions, and gallery and museum experiments aimed to achieve more inclusive museum and gallery programming, experiences, and communities.

Re-presenting Disability is rooted in the disabilities rights movements and the transformations in museum and curatorial studies that have taken place during the past twenty years. It is testimony to the fact that representations shape public discourses and personal identities. Those of us who have been deemed what is now generally called “disabled” historically have had a wide range of social roles and fates, from the mythic, beyond-human qualities of ancient lore; to the nineteenth- and twentieth-century diagnosis of victims with abnormalities that needed to be fixed; to more recent viewpoints that see environments and societies as the focus for modification and change—what is considered the “social model.” Founded on a document introduced by the Union of Physically Impaired against Segregation (UPIAS) in 1976, with the term coined in 1983, the social model has gained currency, particularly in Great Britain, and the contributors to Re-presenting Disability engage with this approach.¹ The international literature, discourses, and phrases dealing with these questions, however, are diverse and vast. In North America, for example, rather than using the social model, these concerns are often aligned with minority or human rights.² The word “disabled” is commonly used and can be favored for a number of reasons, including its association with a social and public condition in contrast to a private and individual impairment. On the other hand, to avoid the negative connotations of the binary disabled and non-disabled, some prefer a phrase first introduced in the United States in the early 1980s—"differently-abled."

In terms of museological discourses and practices, the social model and perspectives presented in Re-Presenting Disability resonate with recent art-historical perspectives that critique the traditional concentration on the autonomous artwork as sole repository of meaning. In this way, the social model matches an emphasis on “the power of display” and the awareness that exhibitions and their installations transform the meanings of objects, while creating subjects who view them.³

Although the museum is the primary locus of study for Re-Presenting Disability, the discussion is set within an expanded field of representations of people with different abilities. The book’s cover is graced with a color portrait bust of a young woman dressed in a swimsuit with a towel turban, standing in a dignified, almost regal, pose. This is one of the paintings analyzed in Garland-Thomson’s thoughtful essay comparing classical portraits with recent ones of people considered disabled. She makes a number of astute comments regarding the way portrait conventions bestow symbolic capital on their subjects, and these pairings are one of the many provocative and rewarding reasons for engaging with this book.

The collection’s first essay, co-authored by Sandell and Dodd, looks at iconic examples of how an understanding of these issues is changing in the twenty-first century, yet remains very much “in process.” Sandell and Dodd analyze three controversial public artworks that gained much media attention: Marc Quinn’s more than eleven-foot-high marble sculpture of artist Alison Lapper, which was placed on the fourth plinth in London’s Trafalgar Square from 2005 to 2007; a bronze statue of Franklin Delano Roosevelt installed at his memorial in Washington, DC, in 2001; and a statute of Winston Churchill displayed in Norwich’s Forum, a massive public civic, entertainment, and business complex. Lapper, who is depicted nude and pregnant, was born without arms and very short legs, and the sculpture is a non-stereotypical image of female beauty, motherhood, and sexuality. (The piece is also discussed in two of the other essays.) Roosevelt, whose paralysis from the waist down had been miraculously hidden throughout his public life and visual legacy, is portrayed seated in a wheelchair. Churchill, who suffered from what has been described as manic-depression, is portrayed in a nine-foot tall bronze, standing, but with arms in a straightjacket. Commissioned by Rethink, which describes itself as Britain’s leading mental health charity, the public sculpture was intended as a “celebration of the life of a man who triumphed over mental health problems” and was part of a “campaign to lift the stigma and discrimination faced by hundreds of thousands of people with severe mental illness.”⁴ All three works produced public debate regarding representation and human difference. In the case of the Churchill figure, the Forum demanded the statue be taken down, and it was removed after three days.

The discussion of these public artworks serves as a striking and effective introduction to the issues of representing disability, particularly for those who are not specialists in this area, in that the description of these portraits offers visually powerful, memorable examples. In their essay, Sandell and Dodd also give some background on Rethinking Disability Representation, a research project designed to investigate the portrayal of disabled people in galleries and museums in England. Initiated by the Research Center for Museums and Galleries at the University of Leicester and involving artists, activists, curators, theorists, and various cultural practitioners, Rethinking Disability Representation took the form of nine diverse interventions and exhibitions, based on the social model, that ran from 2006 to 2009.⁵ Three of the collection’s essays reference projects related to Rethinking Disability Representation, and two examine the Life Beyond the Label exhibition at the Colchester Castle Museum from 2007 to 2008 that used museum objects, artworks, personal testimonies, and films to document the lives of local people. For all nine projects, visitor responses were collected as a research tool for future investigations. Although some of the responses were from individuals who were self-identified as disabled, the majority discussed in the essays were from visitors categorized as non-disabled; these comments ranged from supportive, to feeling unease, to considering an exhibition about disability to be inappropriate.

Dodd and Sandell were co-directors of Rethinking Disability Representation, and it appears that Re-presenting Disability developed as a more inclusive and broad-based examination of related issues. International in scope, Re-presenting Disability is composed of the work of curators, artists, and disabilities studies researchers from the fields of science and technology studies, women’s studies, anthropology, and art history; it also includes a film director. Lain Hart examines the contributions that people with physical impairments are making to the Angkor Archaeological Park in Cambodia, a nation whose image internationally is often associated with amputees and the scourge of landmines. There remain pervasive barriers and discrimination for those with disabilities in Cambodia: for example, even Buddhist monasteries ban individuals with physical impairments from ordination. Hart considers instances where Cambodians with disabilities reclaim “their ownership of national heritage,” and resourcefully integrate their activities with international cultural preservation efforts as a means to recover important aspects of their human dignity, agency, and power while improving their quality of life (41). Among the stories Hart relates is that of Sem Sovanthanf, who lost both legs to a land mine and who in 2003 established the Angkor Association for Disabled (AAD). One of AAD’s programs involves training musicians who now play inside a temple at Angkor Wat. These performances serve to transform this international treasure from a twelfth- and thirteenth-century relic into a “living heritage” site, while securing a livelihood for these artists (46). Essays such as Hart’s could make the reader pause to consider the human costs of current global conflicts and what is now being called the U.S.’s “long war,” and all the civilians and military personal who are joining the ranks of the disabled.

Victoria Phiri addresses the invisibility of differently-abled people in Zambia and their exclusion from many of the areas of Zambian social life. Featuring Zambia’s largest museum, the Livingstone Museum, Phiri notes the absence of these people and communities in the Ethnography and Art galleries that depict the history of Zambia, even though, according to Phiri, “major town centres in Zambia are characterized by streets lined with people with physical impairments (especially blind people) begging” (58). Phiri interviewed the museum’s curators, who are hesitant to make displays more inclusive, considering this “inappropriate,” “distracting” from the main narrative, or too “difficult” due to the prevalent attitudes. Given these views, Phiri acknowledges the need for future research and experiments to deal with these ethical and social challenges—a concern presented throughout Re-presenting Disability and in keeping with the editors’ subjects of activism and agency. Many of the contributors note that the process for more inclusion, agency, and empowerment is evolving and needs further development.

The failure of curatorial experiments is also investigated as instructive, as is the case with Elizabeth Mariko Murray and Sarah Helaine Jacobs’s description of Belinda Mason’s 2007 exhibition, Intimate Encounters: Disability and Sexuality, at the Museum of Sex in New York City. Composed of a series of sensual and sexual photographs of individuals with disabilities, Intimate Encounters was intended to erode limited and stereotypical conceptions of human sexuality. Murray and Jacob frankly discuss aspects of the show that were criticized and would be treated differently in future instances, such as the lack of inclusion of the local disabilities communities in planning, the description of the physical impairment of the individuals pictured in each photo’s label, and inadequate access to the exhibition. (The elevator, which was located outside the museum, was locked and visitors needed a staff escort.)

Hanna Mellemsether writes about the transformation that took place at Norway’s Trondelag Folk Museum when Norwegians with hearing impairments were considered both part of the history exhibited and audience members. This insightful essay raises foundational questions about defining people as disabled—a prominent issue in Deaf Culture communities and when dealing with people described as hard of hearing. Mellemsether raises critical concerns for future work in these matters in terms of how individuals and communities think of themselves, how they want to be identified, and whether any label or category can be sufficient.

Engaging with a book such as Re-presenting Disability can, and perhaps ideally should, lead the reader to question the limits of categories, the right to self-identify, and, even, the viability in ten or twenty years of current terms such as disability or differently-abled. Working with the social model is one means of dealing with these challenges and directing efforts toward transforming societies, barriers, and contexts. Related to this is the fact that the category of disability itself should be considered as fluid. Julian Anderson and Lisa O’Sullivan address the instability of definitions and the revision of related terms and language over time in their discussion of medical discourses. After all, our bodies, abilities, and circumstances are in constant flux. Many of us acquire a variety of disabilities with age, such as those associated with sight or movement. Others acquire them due to accident or illness, or some mental health difficulty, or trauma. Keeping a broad view of the range of human experience within a lifetime inverts traditional stereotypes of so-called disability as otherness. An individual’s experience with disability can be permanent or temporary. An additional consideration is that technological, therapeutic, or environmental improvements or access to resources could modify or “eradicate” a disability. When considered from this perspective, almost all of us, at some point, may be classified as differently-abled. These considerations should not diminish the specificity of these concerns or the urgency of addressing the invisibility, injustice, and exclusion that remain directed at individuals and communities categorized as disabled. Such a point of view can also support progressive “activism and agency.” Re-presenting Disability: Activism and Agency in the Museum is worthwhile reading for those interested in art, museums, and investigations of human differences set within a framework of culture’s power to engender agency and transform our notions of our societies and ourselves.