Unruly Bodies

Life Writing by Women with Disabilities

Susannah B. Mintz

• Publisher: The University of North Carolina Press
• Year: 2009
• ISBN:
  9780807877630
• Topic: Literature
• Subtopic: Feminist Literary Criticism
• Index: Literature

The first critical study of personal narrative by women with disabilities, Unruly Bodies examines how contemporary writers use life writing to challenge cultural stereotypes about disability, gender, embodiment, and identity. Combining the analyses of disability and feminist theories, Susannah Mintz discusses the work of eight American autobiographers: Nancy Mairs, Lucy Grealy, Georgina Kleege, Connie Panzarino, Eli Clare, Anne Finger, Denise Sherer Jacobson, and May Sarton. Mintz shows that by refusing inspirational rhetoric or triumph-over-adversity narrative patterns, these authors insist on their disabilities as a core--but not diminishing--aspect of identity. They offer candid portrayals of shame and painful medical procedures, struggles for the right to work or to parent, the inventive joys of disabled sex, the support and the hostility of family, and the losses and rewards of aging. Mintz demonstrates how these unconventional stories challenge feminist idealizations of independence and self-control and expand the parameters of what counts as a life worthy of both narration and political activism. Unruly Bodies also suggests that atypical life stories can redefine the relation between embodiment and identity generally.

1

auto/body/ography The Fragmented Texts of Nancy Mairs

In the first essay of her collection Waist-High in the World (1997), Nancy Mairs poses the question that informs much of her autobiographical work: “Who would I be if I didn’t have MS?”¹ Not at all glibly rhetorical, the question lies at the center of Mairs’s writerly enterprise, which attempts to invent a phenomenological aesthetics that will illustrate the intersecting influences of gender, disability, and discourse in the formation of identity. As she declares in the title essay of Carnal Acts (1990), for instance, writing emphatically about the inseparability of body and mind, “I speak as a crippled woman. . . . No body, no voice; no voice, no body. That’s what I know in my bones. . . . I couldn’t write bodiless prose.”² And, invoking Merleau-Ponty, she answers her own question at the start of Waist-High in the World, “Literally, no body. I am not ‘Nancy + MS’ ” (8).³ The refusal of that equation—of the notion of an a priori subject onto which the condition of multiple sclerosis has been added or grafted—sums up the kind of embodied self-consciousness Mairs repeatedly describes, one that derives from her effort to experience disabled identity as “all of a piece” (42).

Throughout her many collections of personal essays, Mairs promotes the generative friction between two models of identity, body and text, as constitutive of her narrative “I.” On one hand, her repeated critique of Western culture’s proscription of women’s writing and of its demarcation of the “normal” body takes up the concerns of feminist autobiography theory and contemporary disability studies alike, both of which have made use of social constructionist theory to interrogate gender and disability as effects of language. Capitalizing on the fragmentary, suspended nature of personal essay, Mairs writes against two traditions: the “masculine” model of conventional autobiography, with its underlying ideology of stable, unified, and disembodied selfhood, and “the rules of polite discourse” (Carnal Acts 54; see also 60-61) that inhibit both female speech and the articulation of disabled experience. Mairs thus eschews the “certitudes,” as Sidonie Smith describes them, that have traditionally structured life writing by men: “chronological time, individuality, developmental selfhood, myths of origins, the fixedness of identity, bodily wholeness, the transparencies of referentiality, the will to knowledge, the unified self.”⁴

Mairs’s essays also stress the enormous influence of cultural myth and expectation, out of and against which disabled subjectivity emerges as the performance of various “scripts.” The word is used repeatedly in her first collection, Plaintext (1986), where Mairs argues that identity is constructed by the internalized lessons of literature, popular media, and the hegemonic discourses of religion, medicine, and psychoanalysis—in short, by “all the fictions my culture would yield up to my scrutiny.”⁵ Her challenge to cultural assumptions about a disabled body shows it to be not an absolute biological category but a historically specific construction, precipitating out of social relations, that enables and guarantees “normalcy.” In Mairs’s own words, “sickness forms only in relation to some standard of health which does not exist of itself in some fictional objective other world but which is created from the observations, responses, values, and beliefs of those ‘healthy’ subjects who seek to articulate it” (Plaintext 141), and as she reminds us in Voice Lessons, “I’m ever aware of my self as a cultural, not merely a personal, construct.”⁶ By writing about the realities of her disability, Mairs thus openly attempts to disturb the patriarchal ableism that has dominated both literary and cultural representations of identity.

But on the other hand, as her disbelief in “bodiless prose” suggests, Mairs experiences and therefore narrates herself in the highly individual terms of her corporeality. Interestingly, Mairs’s work exhibits elements of both the unembarrassed, “blunt” honesty about disabled embodiment that Tobin Siebers calls for and the normalized body of theory that many disability scholars have critiqued.⁷ Indeed, Mairs has written at length of her affinity for the uncontainable female body of Hélène Cixous and of her desire to breach the coercive (if also fragile) “binary structure of . . . Logos” through the explosive erotics of l’écriture féminine (Voice Lessons 74). French feminism provides Mairs with a certain vocabulary for aligning the disruptions of MS with the disruptive form of the essay. In “The Laugh of the Medusa,” for instance, which calls for a women’s writing that would manifest “the ebullient, infinite woman,” the woman of “luminous torrents,” Cixous’s imperatives are also Mairs’s: that the female author “write your self. Your body must be heard,” that “it’s with her body that [a woman] vitally supports the ‘logic’ of her speech. Her flesh speaks true.”⁸ Mairs takes up the very word that Lennard J. Davis has made contentious in his critique of contemporary theory’s ableist foundations: “jouissance . . . Even its pronunciation suggests the untranslatable pleasure of the word: the lips pout and then stretch, the sound slips back from the tongue’s tip to be swallowed with a sigh. A word that happens to the body: writing” (Voice Lessons 47). “Feminine discourse,” in Mairs’s articulation, is “a babel of eroticism, attachment, and empathy” (42).⁹

This explicit association with the poetics of l’écriture féminine allows for many of the insights of Mairs’s dismantling of patriarchal constructions of the disabled body, but it also opens her, inevitably, to the challenges leveled against theory generally by disability scholars and Cixous and Irigaray more specifically by other feminists: that such a politics of writing reifies an able body, relegates women to the body of patriarchy, and perpetuates the problematic and essentialized binary of masculine/feminine (even when, or especially when, those terms are abstracted beyond their application to human bodies). Yet the fact of Mairs’s illness, along with her commitment to “esteeming” the disabled body on the page, potentially redefines how we might understand the notion of a feminine writing. The disabled body, in Rosemarie Garland-Thomson’s words, is precisely “the body that cannot be universalized.”¹⁰ If Mairs’s “crippled” form does not always enjoy the diffuse pleasures claimed by the Cixouvian body, and if its excesses defy not just patriarchal repression of female expression but also ableist standards of appeal, sensation, and comportment, then, as Thomson proposes, “disability, as a formal category, can pressure feminist theory to acknowledge physical diversity more thoroughly.” Through the reality of her own physical condition, Mairs demonstrates the need to extend the “feminine” past a visionary sexuality of multiply potential eroticism that is fundamentally grounded in a notion of corporeal normality and essentialized femininity.

In this way, Mairs writes both with and against theoretical models of embodiment that, to quote Kristin Lindgren, “too often depend on an abstract idea of a normative body.”¹¹ Mairs’s own phenomenology demands reckoning with a degenerative condition whose specific effects—pain, altered shape, and loss of function and mobility—force a continual renegotiation of the nature of selfhood. At the same time, Mairs shares with both feminists like Cixous and other writers of disability narratives a desire to celebrate bodily uniqueness in direct opposition to the cultural denigration of that body, be it female, disabled, or both. To counteract the essentializing maneuvers of patriarchal discourse, Mairs presents a self both indeterminate and adamantly embodied, capable of becoming unhinged from cultural categories but also defined by the reality of MS. Asking that her readers acknowledge both the ordinariness and radical difference of her “crippled” female self, Mairs exposes the boundaries apparently inherent in such oppositions as masculine/feminine and able/disabled as narrative fictions; by denaturalizing cultural narratives, she examines the body as the site of conflicts of power. As Lindgren argues, then, Mairs’s first-person narratives at once disrupt easy certainty about gender and disability by exploding a humanistic notion of unified selfhood and offer new “knowledges” about embodiment that are “richer, more specific, and more inclusive” of both difference and change.¹² Disability becomes, in Mairs’s candid appraisal of her life as a (white, Catholic, educated, middle-class, straight) woman with MS, a new sort of postmodern trope for ambiguous selfhood, one that forces vigilance about not settling into the confinements of identity categories defined by patriarchal or ableist paradigms.

If life writing generally has the potential to redraw ideological and conceptual boundaries, the essay may be particularly well suited to the representation of disability, as G. Thomas Couser suggests, because its resistance to closure and resolution evokes the paradox of chronic conditions like Mairs’s MS—the stasis of a condition from which one will never recover coupled with the constant unpredictability of the disease. Mairs has explicitly characterized her purpose in writing essays as an attempt to challenge the reductive, static categorizing of gender and disability inherent in masculinist symbolization. She writes that her “ ‘I’ seems simply not to be the male-constructed ‘I’: It is more fluid, diffuse, multiplex” (Voice Lessons 86), and she claims to “write essays in the Montaignesque sense of the word,” as “tests, trials, tentative rather than contentious, opposed to nothing, conciliatory, reconciliatory . . . their informing movement associative and suggestive, not analytic and declarative” (Voice Lessons 75). “I do not wish,” she continues, “. . . to produce an autobiography bound by the narrative conventions of temporal linearity” (Voice Lessons 115). Essay collections allow Mairs to create heterogeneous “bodies” of writing that range through memory, experience, and location in a way that simultaneously suspends the progress-narrative of classic autobiographical prose and evokes the open-ended corporeal reality of living with multiple sclerosis.¹³

As I explain in the introduction, not all disability scholars are persuaded of the viability of life writing as a mode of resistance to social oppression; some have objected that the focus on the personal obscures larger political issues that mediate disabled experience. David Mitchell and Sharon Snyder, for instance, concede that the social merit of work such as Mairs’s lies in “provid[ing] readers with an alternative perspective on what it means to live with a disability,” but they also worry that “first person narratives of disability have historically fed a public appetite for confessional writing” and “cannot singularly provide the interpretive paradigms needed to revise cultural understandings of disability.”¹⁴ When Mitchell and Snyder write that Mairs’s work “shifts attention away from institutional pathology and social attitudes toward the individual’s experience of disability” and therefore “remains cloistered” in the realm of personal affliction,¹⁵ they imply that the first-person strategy inherently fails to engage or negotiate the complex cultural forces that constrain the disabled and nondisabled alike.

Yet as I argue in the introduction and elsewhere,¹⁶ life writing as a genre necessitates neither that an author construct a singular, individualistic narrating consciousness nor that he or she retreat from conceiving of identity in political and/or communal terms. I hope to show in what follows that Mairs is important as an autobiographer of disability precisely because her work insists on the intricate connections between subjective experience and cultural narrative, examining both gender and disability as a “cultural text,” in Thomson’s words, “that is interpreted, inscribed with meaning—indeed made—within social relations.”¹⁷ Indeed, Mairs’s personal essays may be least “personal” when describing her life with MS—bound up in her narratives with an immersion in and then defiance of patriarchal stereotypes of feminine behavior—because the representation of that life entails so thorough a challenge to the medical model of disability and to bourgeois claims of individuality or immunity to social conditioning. Lindgren is careful to point out that while first-person narratives such as Mairs’s do not offer “unmediated access to the body’s truths,” they do nonetheless generate “knowledge . . . critical to the development of theories of identity, subjectivity, and the body.”¹⁸

“Like all negative terms,” Mairs writes in Waist-High in the World, “ ‘disability’ is part of a binary, existing in relation to a privileged opposite: that is, one is ‘disabled’ only from the point of view of another defined by common social values as ‘able.’ . . . Whoever gets to define ability puts everyone else in place, which . . . then becomes other, outside” (13-14). This kind of assertion encapsulates the position Mairs takes throughout her essays, one that emphasizes the social and linguistic locations of disability and gender while also hoping to “normalize” her female, disabled body (Carnal Acts 125; emphasis in original), to render its characteristics unremarkable, commonplace. Mairs’s essays proceed as a series of dislocations, inviting but also refusing identification with her audience, striving to convince readers of the ordinariness of her daily embodied life even as they call attention to the ways in which it is marked as tragic, deviant, or strange. In this, Mairs’s work accords with Davis’s contention that “we are all nonstandard”; in her more colloquially articulated concern to “stir” the able-bodied “to recognition of the similarities that underlie their experiences and mine, to illuminate and delight in and laugh over the commonalities of human life” (Voice Lessons 109), we can hear Davis’s concept of disability subjectivity as “a commonality of bodies within the notion of difference.”¹⁹ Indeed, that goal of stimulating recognition and acceptance across boundaries is one of the defining features of Mairs’s life writing.

The imbrication of semiotic readings of self with essays that posit the body as the locus of meaning is particularly evident in Plaintext. Here Mairs deploys the essay as an act of resistance to the power exerted on the body and, at the same time, attempts to rewrite the cultural myths that coerce women into positions of subservience and self-hatred. The preface baldly sets the terms of the relationship between authorship of self and text: “A few years ago I almost died by my own hand, and when I woke from that disagreeable event, I recognized for the first time that I was fully and solely responsible for my existence. . . . These essays enact that responsibility . . . in the terms in which I can understand it: as a writer of my life” (Plaintext xi). To “write a life,” then, means not simply to record the stuff of its continuity but to understand textuality as a literal, and more literally life-affirming, body/self: “I have to write. If I avoid that mandate, I wind up trying to kill myself. It’s as simple as that” (104).

The predominant texture in Plaintext is one of interwoven narrative, where the present moment of an essay, for example, will be interrupted by excerpts from Mairs’s own youthful diaries, or where the insights of contemporary feminist theory are pitted against such cultural “myths” as fairy tale or medical discourse. The corrective to the force of patriarchal discourse, revealed by Mairs’s analysis of her own implication within its oppressions, is her tactically polyvocal style, heteroglossic within essays (conversing with different “selves” through diaries, old essays, photographs of herself, and so on) and destabilizing across essays (the book’s temporal looping, its refusal to collate individual pieces into a single life trajectory). In this sense she disproves what Couser has claimed about disability narratives generally—that they tend to be formally conservative, “rooted in [the] familiar solid world” of “premodernist narrative conventions.”²⁰ In part, Couser implies, the restraint imposed on the formal may result from the very danger of the content, which is “transgressive” simply by giving voice to disabled experience. Plaintext proves its own initiating claim, that writing can be a threshold to radical self-renewal, specifically by contesting expectations of narrative continuity.

The widely anthologized “On Being a Cripple,” from the first section of Plaintext, illustrates through juxtaposition the way in which subjectivity can be conceived as precipitating out of the friction—and the gap—between discourse and corporeality. The essay, which includes a gentle refusal of the obfuscations of more “politically correct” terminology such as “handicapped” or “differently abled,” is in part Mairs’s defense of “cripple” as the word she uses to identify herself (an Orwellian argument writ small);²¹ she then goes on to provide a condensed history of her experience with MS. Despite the author’s protest that “I am not a disease,” “On Being a Cripple” does in fact explore the complicated ways in which cultural assumptions, which assign meaning to bodies according to narrowly conceived parameters of normalcy and beauty, enforce a sense of identity for the crippled, other body for whom the ideal is unavailable (17). While the essay remains for the most part in the present tense, being primarily a richly detailed account of the impact of MS on a current “I,” it does allude to past and future “Nancys” whose needs and suffering are not those of the speaking self: “At the beginning, I thought about having MS almost incessantly. . . . Gradually I came to understand that the Nancy who might one day lie inert under a bed-sheet . . . was not the Nancy I was at present” (18). A single, unified “Nancy Mairs” disappears in the narrator’s refusal of the norm that would marginalize her and in this multiplicity of selves, between whom likeness can be no more fully guaranteed by bodily continuity (since her physical s...