Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. By Rosemarie Garland Thomson. New York: Columbia University Press, 1996. Pp. 248. $45 (hb); $16.50 (pb).

Enforcing Normalcy: Disability,Deafness and the Body. By Lennard Davis. New York: W. W. Norton, 1995. Pp. 224. $60 (hb); $17 (pb).

Life as We Know It: AFather, A Family, and an Exceptional Child. By Michael Bérubé. New York: Random House, 1996. Pp. 284. $24.

Two events recently brought questions about disability into the public eye: controversy over whether the Franklin D. Roosevelt memorial should include references to the former President's disability, and the announcement by Mattel Inc. that it would introduce a doll in a wheelchair called Share a Smile Becky to its Barbie collection. Each attests to the fact that increasing attention is being paid to the voices of Disability Rights activists, who have lobbied for more positive images of the disabled, as well as public conversation about social and legal issues surrounding disability. Both cases also indicate a heightened sensitivity to the intimate relationship between representations of disability and the beliefs and actions of persons in the social world. Over the past year, three scholars in the humanities have analyzed the correspondence between representations of disability, cultural attitudes, and public policy. Although these studies by Rosemarie Garland Thomson, Lennard Davis, and Michael Bérubé differ in focus and tone, together they make a valuable statement about the future of Disability Studies. Their work will be of interest to scholars concerned with the effects of representation on social and political formations, the role of personal experience in theoretical discourse, the development of an increasingly complex and nuanced understanding of difference, as well as the ethical and political implications of that understanding.

Rosemarie Thomson's Extraordinary Bodies is an analysis of the "disabled woman figure" in American literature and culture that also attempts to broaden current scholarly discussions of identity by introducing disability into the more familiar variables of race, class, and gender. The perspective on disability offered by Extraordinary Bodies is indebted to the insights of feminist theory, which explores the relationship between personal experience and collective action, views the body as a cultural construction produced rather than described by social interaction, and seeks connections between gender oppression and broader systematic inequalities. The strength of Thomson's project is that rather than simply borrowing the methodology and politics of feminist inquiry to study disability, she also suggests the ways in which feminist scholars might learn from Disability Studies. As feminism increasingly expands its scope of inquiry beyond an examination of gender oppression, Thomson suggests that disability will be an important addition to its current exploration of intersections with race, class, and sexual difference.

What Thomson calls "feminist disability studies" will not simply add another category of difference to those variants presently under consideration, but has the potential to produce a feminism that is more capacious and subtle in its understanding of identity, subjectivity, and social relations. For example, the study of disability complicates the feminist critique of the sexual objectification of women, for if the normative female body is captive to the male gaze, the disabled female body is rendered asexual or invisible by the stare. Feminist work that has argued against the enforced association of the female body with reproduction and childrearing will be complicated by a consideration of the disabled woman, who is seen as unfit for pregnancy and motherhood. Those who assume the universal desirability of reproductive freedom will also need to develop a greater sensitivity to the connection between decisions to abort fetuses diagnosed with physical or developmental disabilities, and the eugenic impulse to eradicate "defective" infants. Thomson's generous account of the tensions between feminism and Disability Studies does not reject previous work that holds gender or sexuality as its primary object of inquiry, but rather suggests that the conflicts arising from this intersection have the potential to produce productive, ongoing debates.

While Extraordinary Bodies dwells most extensively on the figure of the disabled woman in literary and popular culture, Thomson also brings together a number of theoretical issues that will be important in defining the methods and scope of Disability Studies in the future. She draws first on Erving Goffman's stigma theory to describe the collective process whereby certain bodies are designated as deviant in order to reinforce the normality and legitimacy of a dominant social group. Stigma theory is concerned not only with the perception of difference within a collective formation, but with determining why certain differences get valued negatively and become the grounds for discrimination and exclusion. As Thomson explains, stigma theory is useful because it "resituates the 'problem' of disability from the body of the disabled person to the social framing of that body" (32). The work of Mary Douglas is instrumental in helping to understand the cultural intolerance of anomaly that is responsible for adverse attitudes toward the disabled body. Equating the disabled body with Douglas's concept of "matter out of place," Thomson borrows Douglas's considerations of pollution and taboo to understand the negative reception of physical difference in Western culture. Finally, the work of Michel Foucault helps to historicize current attitudes toward disability by understanding them as the product of modern institutions and social formations. Foucault's argument that modernity gave rise to a network of institutions designed to regulate, normalize, and maximize the efficiency of bodies positions "disability" as the effect of shifts in power, rather than as a quality inherent in certain bodies. Aided by the work of these three critics, Thomson situates her study within the context of American culture. She argues that American national identity is governed by the Emersonian ideal of liberal individualism, which relies on a model of personal autonomy and self-government that is premised on an equality of ability and means shared by all citizens. The disabled figure, Thomson claims, "speaks to the tension between uniqueness and uniformity" within liberal democracy, for it simultaneously offers a dangerous resistance to the imperative of self-regulation, and embodies a valued non-conformity. "In a sense then," Thomson writes, "the disabled figure has the potential to inspire with its irreverent individuality and to threaten with its violation of equality" (44).

Extraordinary Bodies explores three sites where the contradictions between a desirable individuality and a dangerous anarchy evoked by the disabled body are played out: the American freak shows that were popular between 1835 and 1940, nineteenth-century sentimental fiction, and the writing of Black women in the twentieth century. A chapter on the sideshow demonstrates the appeal and threat of the freak's body, which offered paying audiences an enticing image of radical individuality and at the same time reassured them of their own normality. Thomson understands the period of the freak show as a transitional phase between the pre-modern interpretation of the disabled body as a wondrous portent, and the present medicalized understanding of disability. Freak shows are an important object of study for scholars of disability because they reveal the processes whereby differences are transformed into social barriers between Self and Other. In Thomson's words, freak shows "framed and choreographed bodily differences that we now call 'race,' 'ethnicity,' and 'disability' in a ritual that enacted the social process of making cultural otherness from the raw materials of human physical variation" (60). An analysis of Sartje Baartman, "the Hottentot Venus," and Julia Pastrana, "the Ugliest Woman in the World," illustrates the intersecting influences of race, gender, and other forms of physical variation in the production of freaks. In the next chapter Thomson demonstrates that the fiction of Harriet Beecher Stowe, Rebecca Harding Davis, and Elizabeth Stuart Phelps, which appears to valorize the disabled bodies demonized by the freak show, in fact reinforces the same ideology of liberal individualism. By promoting what Thomson calls "benevolent maternalism," these authors rescript the autonomous individuality typically available only to men in order to empower white, able-bodied women through denial and self-sacrifice for others who are less fortunate than they. In her compassion for her less fortunate sister, the maternal benefactress in fact secures her own place in the public sphere by representing the disabled woman as helpless, impotent, and passive. Finally, Thomson explores the revalorization of the disabled figure in the fiction of Black women authors of the twentieth century. In contrast to the nineteenth-century sentimental novel, in the work of Ann Petry, Toni Morrison, and Audre Lorde, "the rhetorical framing of bodily difference...moves from a politics of sympathetic advocacy to a politics of affirmative identity" (107). The positive representation of disabled Black women is a way of resisting the normative association of beauty with whiteness and creating an empowered identity rooted in the Extraordinary Bodies.

Ending on an affirmative note, Thomson calls for a larger shift in cultural attitudes from pity to the accommodation of disability. Although her conclusion reiterates the connections between the three sites under consideration as "genres in which the representation of disabled bodies is especially ambivalent and unstable" (136), it is not entirely clear how the freak show, sentimental fiction, and Black women's liberatory novels are linked with one another or what historical narrative emerges from their juxtaposition. Extraordinary Bodies leaves open the question of whether the positive representation of disability in Black women's fiction signals a larger cultural transformation in attitudes toward bodily difference in the second half of the twentieth century. Or do the pathologizing impulses of the freak show and benevolent maternalism persist into the present alongside more affirmative discourses of disability? Despite this disjunction between individual chapters, Extraordinary Bodies remains a powerful example of how Disability Studies can transform, and not simply add to, current considerations of bodily identity.


 
While Lennard Davis's Enforcing Normalcy is less explicitly about gender than Extraordinary Bodies, the author shares Thomson's interest in the parallels between disability and other categories of difference. Broader in focus than Extraordinary Bodies, this book explores the interrelationship between deafness and physical disability from the eighteenth century to the present in both Europe and the U.S. Like Thomson, Davis seeks to denaturalize disability, conceiving it as a historically specific, social relationship produced by interactions between persons and groups. As he puts it, "disability is not an object—a woman with a cane—but a social process that intimately involves everyone who has a body and lives in the world of the senses" (2). Understanding that disability is created by the cultural need to distinguish the normal from the abnormal, the healthy from the infirm, enables the project of thinking critically about a theory and politics of disability rights. Following the lead of those scholars that have turned to whiteness to understand the construction of racial categories and to heterosexuality to understand homophobia, Davis concentrates on the conception of "normality" in the nineteenth century with the emergence and popularization of statistical science. Davis illustrates the influence of the concept of "the average man" (l'homme moyen) on the work of Marx, Francis Galton, the novelistic form, and Freud's theories of human sexuality. He draws on these diverse examples to insist that the concept of the normal is the product of a particular historical moment that is "part of a notion of progress, of industrialization, and of ideological consolidation of the power of the bourgeoisie" (49).

Having explored the historical circumstances that allowed for the production and proliferation of the concept of normalcy in the nineteenth century, Davis moves back in time to examine a privileged moment when deafness became the object of intense interest in Western culture. Concentrating on the eighteenth century, Davis claims it as the period when, for the first time, the Deaf are consolidated as a subgroup with its own languages and institutions. The formation of Deaf culture coincides with the spread of literacy and growing attention to the practice of reading, as Europeans became increasingly concerned with the connection between language and humanity. It is no accident that a preoccupation with deafness arose at precisely the same moment that unprecedented numbers of people developed the ability to read because "in order to become readers, people in the eighteenth century had to become deaf, at least culturally so" (62). This historical perspective allows Davis to make the innovative argument that deafness can be understood as an attribute belonging to all persons when they are engaged in the act of reading.

Treating deafness and disability as social processes rather than attributes of certain bodies allows Davis to explore the connections between disability and the rise of modern conceptions of the nation. If the consolidation of national identity is premised on sharing a common language, the Deaf present the same problem as other minority groups—for they have their own community, history, and culture—which threaten the conception of the nation as a seamless unit made up of able-bodied citizens. Likewise, Davis demonstrates how the rise of industrial capitalism, which increasingly linked citizenship to the ability to perform labor, resulted in the exclusion of the disabled body, and particularly the lower-class disabled body, from definitions of national identity. Finally, in the same way that Thomson points out the uses and limitations of feminist theory for the study of disability, Davis discusses the relationship between deafness and critical theory by revealing the abelist assumptions behind the use of metaphors of the body to describe cognitive processes, such as blindness and insight. Deafness, in particular, has been conceived as the absence of language, and silence has been traditionally associated with repression. However, instead of seeing deafness as an oppressive lack of language, Davis suggests that there is a more intimate connection between communication and the body involved in sign language than in oral communication. This observation will be of particular interest to feminist critics concerned with a politics of the body, for sign language involves a gestural repertoire that has the potential to challenge the binary opposition between speech and silence. Following Cixous's imperative that "women must write through their bodies" (qtd in Davis 111), Davis argues that sign language has a less mediated relation to physicality than more conventional forms of linguistic communication.

In the final section of Enforcing Normalcy, Davis returns to a broader consideration of the disabled body and its status within the Western aesthetic tradition. His discussion of art history is a useful addition to Thomson's analysis of literature and popular culture. Davis offers a unique interpretation of the Venus de Milo—perhaps the most iconic symbol of beauty and femininity in Western culture—as "the disabled wom[a]n of art." Seeing the Venus as the most beautiful woman in the world has only been possible through the Art Historian's repression of the knowledge that her body is mutilated. Davis connects this repression to the originary fantasy of bodily integrity that occurs during the mirror stage, when the traumatic perception of fragmentation is replaced by a fiction of bodily integrity. The Venus thus offers an uncomfortable reminder that we all experience our bodies as fragmented: "What this analysis tells us is that the 'disabled body' belongs to no one, just as the normal body, or even the 'phallus' belongs to no one" (140). By revealing the assumptions that allow us to construct rigid distinctions between bodies that are normal and abnormal, and the ways in which we are all in fact both abled and disabled, Enforcing Normalcy, like Extraordinary Bodies, makes a convincing argument for the inclusion of Disability Studies in tandem with analyses of other forms of difference.

While the ambitious scope of Davis's inquiry accurately illustrates his point about the pervasive and damaging valorization of "normality" within Western culture, the force of his argument is diffused by an overwhelming accumulation of examples. Because, as Davis himself acknowledges, there are significant differences between deafness and other forms of physical impairment, Enforcing Normalcy is not always successful at bridging the gap between the two. There are also moments of tension in this theoretically sophisticated account between the desire to reveal the abelist assumptions that underlie the Western philosophical tradition, and a reliance on deconstruction, psychoanalysis, and Marxist theory. In Chapter 2, for example, Davis reveals the normalizing tendencies of Freudian psychoanalysis, and then in Chapter 6 uses psychoanalysis in a seemingly uncritical fashion to analyze cultural anxieties about the disabled body. These contradictions evidence the difficulties faced by Disability Studies as it seeks to simultaneously criticize and make a place for itself within the academy.


 
While Thomson (a woman with a disability) and Davis (born and raised by deaf parents) both trace their concern with disability to personal experience, Michael Bérubé's Life as We Know It is the most autobiographical of the three works. Written for a broader audience than Extraordinary Bodies and Enforcing Normalcy, Life as WeKnow It is a moving account of the first three years in the life of Bérubé's son, Jamie—born with Down's syndrome—that is woven together with a deft analysis of many of the same issues that concern Thomson and Davis. Like other scholars of disability, Bérubé recognizes that questions about representation are crucial to the ways that people with disabilities have been and will be understood in the future. "Representations matter," he writes, "That's why advocates of the disabled are so concerned about polite words, popular movies, and visual and textual representations of every kind" (260). There is an intimate connection between the ways in which the developmentally disabled are represented by doctors, educators, politicians, and artists (whether they are called "mongoloid idiots" or persons with Down's syndrome, for example), and the social policies that are instituted to care for them and protect their rights.

Bérubé's account of the ethical questions surrounding representation is particularly compelling because it is anchored by the narrative of his relationship with Jamie, who is at once "a child with a developmental disability," whose experiences are indicative of larger social and political problems, and an individual with his own quirky tastes, mannerisms, and relationships. Striking a balance between the general and the particular is crucial to Bérubé's goal of representing his young son, and in doing so, enabling his readers to ask more abstract moral questions "about our obligations to each other, individually and socially, and about our capacity to imagine other people" (xix). If recent critical theory has tended to divorce the ethical from the aesthetic, Bérubé contends that there is an important link between aesthetics and justice. He ends Life as We Know It with the powerful examples of persons with Down's syndrome who, a generation ago, would have been institutionalized, but have now begun to represent themselves in print, demonstrating that given the proper resources, they are in fact capable of speaking for themselves. Bérubé concludes by reiterating that the ultimate goal of representing his son is "that Jamie will someday be his own advocate, his own author, his own best representative" (264).

The task of learning to imagine others, and thus developing a sense of responsibility to them, is linked to ongoing debates about the distribution of social and economic resources. Bérubé treats questions about health insurance, abortion and fetal rights, social services for the disabled, and the value of intelligence testing with great sensitivity and complexity, taking the pragmatist's position that because different problems will elicit a range of different solutions, we need laws and social policies that are supple and nuanced enough to allow individuals to make choices from a variety of options. To take one instance that preoccupies all three authors, Bérubé illustrates how debates about reproductive freedom and prenatal testing are complicated by an awareness of disability issues. Too much attention is placed on the detection of fetal "abnormalities," Bérubé believes, while not enough is focused on treating those cases once the infant is born. Navigating the contentious debate about where human life begins, he rejects the possibility that there is one right answer and argues instead for ongoing public deliberation and better resources to aid parents in making informed decisions. These problems, as Bérubé understands them, do not call for a definitive solution but rather point toward the question of "whether we will maintain a social system that makes allowances for unpredictability, variance, competing moral imperatives, difficult decisions, and even perverse decisions" (85). Allowing for this range of possibilities is not a matter of "the right to privacy" in the traditional sense, but of developing socio-political structures that establish and protect the freedom of individuals to make certain decisions without public intervention or political coercion. Although the leaps from autobiography to discussions of public policy or more abstract ethical questions are at times disorienting, this readable work manages to be at once conversational and intellectually engaged. Bérubé's skillful, if dizzying, negotiation between autobiography and critical analysis of social, political, and artistic matters will make current debates in Disability Studies accessible to a broad range of scholars and more general readers.


 
The association between personal experience, theoretical analysis, and an agenda of social and political change links the methods of Disability Studies to the best scholarship on race, gender, and other forms of identity, and makes each of these works intellectually and emotionally compelling. In all three cases, the limitations of these provocative studies are an outgrowth of the challenges of breaking new ground. If the work of these scholars seems at times pulled in too many directions at once, it is because of the many pressing political and theoretical questions they seek to address. The range of disciplinary methods that characterize this new work in Disability Studies opens up the field, suggesting the possibilities of an inquiry that is driven both by the pleasures of critical analysis and each author's sense that these are some of the most urgent ethical questions of our time.