Unruly Bodies: Life Writing by Women with Disabilities

introduction

JANE: Would you still love me if I got burned in a fire?

BILLY: Yes.

JANE: If I ran into a tree and got paralyzed?

BILLY: Yes.

JANE: What if I were totally disfigured, if my face were all scraped away, I had no arms, no legs, no brain waves, and I was being kept alive on a heart-lung machine. Would you love me?

BILLY: No. But we could still be friends, though. (Laughter)

—Kelly Preston & Kevin Costner, in For Love of the Game (1999)

Linking two important but as yet disconnected fields of inquiry—disability theory and feminist autobiography studies—Unruly Bodies introduces readers to disability and illness narratives by eight contemporary American writers: Nancy Mairs, Lucy Grealy, Georgina Kleege, Eli Clare, Connie Panzarino, Anne Finger, Denise Sherer Jacobson, and May Sarton. These authors tell a kind of life story that has commanded scant literary attention or popular readership until recently, not simply because they attend specifically to their female bodies, but because those bodies diverge too dramatically from both the idealized human form of Western culture and the disembodied narrative self of conventional autobiography. Their overt intention is to challenge the troping of disability in able-bodied culture as deviance, helplessness, insufficiency, and loss, as well as to speak openly about a form of embodiment often excluded from the conversation in both disability and feminist discourse. I argue that these eight writers display corporeal difference to demonstrate the damaging effects not of disease or impairment but, rather, of the cultural mythologies that interpret those conditions in reductive or disparaging ways. In texts that deftly combine a disability politics with the revisionary flexibility of literary life writing, they generate a keener, more critical understanding of how gender and disability interact in the formation of a woman’s identity.

To the extent that they present the anomalousness of their bodies as a discursive phenomenon resulting from narrow social expectations of beauty, fitness, health, or physical competence—rather than as a biological or structural aberration—these life writers subscribe in a broad sense to the social model of disability. Articulated in the mid-1970s by activists in Britain, the social model contested the dominance of a medical paradigm by defining disability not as an affliction of the individual body (an error to be fixed by surgical or chemical intervention or overcome by rehabilitation) but, rather, as a function of the complex social and political dynamics that, in setting standards of normalcy, marginalize some bodies as deviant.¹ By rewriting disability in terms of power and discourse rather than genes or physiology, the social model sought to demystify the apparent truth-status of disability as an indicator of real corporeal flaws. Fundamental to this paradigm is a conceptual distinction between physical impairment as the material condition of the body and disability as a set of attitudes and practices imposed upon that body to discipline its divergence from accepted norms. Contextualizing disability as a social and relational phenomenon challenges the prevalent response to disability as a catastrophic event in or of the body, implicates the able-bodied in the discussion, and exposes the boundaries of culture’s idealized physical form as historically specific and ideologically produced. In this view, disability, as discrete from impairment, is socially constructed, and activism thus focuses on dismantling the barriers—architectural as much as ideological—that exclude disabled people from full participation in social life.

The disability movement, with the social model as its theoretical core, posed a vital challenge to the medical or individualist position that disability is reducible to physical dysfunction and sought to divorce the state of the body from negative assessments of subjectivity based on bodily particulars. As scholars have recently argued, however, one paradoxical consequence of its strict divide between impairment and disability is that the social model ends up construing the body in much the same terms as those of the medical model it hopes to resist. The separation between body and culture tends to reinstate a problematic mind/body binary and renders the body of the social model an ahistorical, pre-social, purely natural object—just as, to quote Bill Hughes and Kevin Paterson, medicine would have it.² Hughes and Paterson describe this body as devoid of history, a dysfunctional, anatomical, corporeal mass obdurate in its resistance to signification and phenomenologically dead, without intentionality or agency.³ Some have further protested that in the battle against prejudice waged by the disability movement, articulating the pains and frustrations of impairment has become unacceptable, as if that acknowledgment would play into the hands of oppressors apt to seiz[e] on evidence that disability is really about physical limitation after all.⁴ Much work in contemporary disability studies thus theorizes impairment itself as both a lived experience and an effect of discourse, a historically situated function of social and political relationships and an idiosyncratic physical situation that affects people in highly different ways.

Inasmuch as disability scholars attend to matters of representation and to the ideological practices that produce disability, many have also called for a return to the visceral in disability studies.⁵ As Tobin Siebers concludes a recent essay on the politics of disability representation: What would it mean to esteem the disabled body for what it really is?⁶ Siebers argues that current theories of the body, to the extent that they privilege empowerment, pleasure, and physical adaptability, fail to confront disability in any transformative way and cites this representational absence as one factor in the social and political neglect of the needs and perspectives of people with disabilities. To take serious account of the daily routines of a disabled body (how it moves, eats, eliminates, has or does not have sex, hurts, reproduces, and so on) is to invite a potential sea change in social attitudes⁷ about independence, functionality, and social achievement and, in turn, about a host of controversial issues from abortion to genetic research. Siebers writes that the political struggle of people with disabilities . . . requires a realistic conception of the disabled body, and he promotes the rhetoric of realism—the new realism of the body⁸ that typifies much contemporary life writing of disability—as a significant mode toward dismantling dominant stereotypes that obstruct ideological change.

The autobiographers studied in Unruly Bodies are compelling precisely because they write their bodies—their gendered, disabled bodies—as textually produced but also phenomenologically alive, because they train their attention on the family dynamics, medical intrusions, media representations, and structural barriers that conspire to make impairments socially and psychologically disabling, while also frankly describing what William James might call the really real of their physical conditions. The various kinds of narratives crafted by these authors are not just manifestos for resisting oppression, detailed accounts of medical conditions, or sociological case histories, though they contain elements of each of those rhetorical genres. As suggested by several of their titles (Grealy’s Autobiography of a Face, for instance, or Finger’s Past Due: A Story of Disability, Pregnancy and Birth, or Jacobson’s The Question of David), they are also open-ended histories of embodiment, tales about anomalous physicality that emphasize a poetics as much as a politics of disability identity. And as the serial autobiographers Mairs and Sarton imply, disability is an inconstant experience, its significance to the story of self requiring multiple retellings, repeated narrative shaping. These book-length, though not always continuous or linear, texts present disability as a kind of work-in-progress, a process of becoming rather than an immutable fact of physicality located beyond the scope of words to liberate and to define.

Given their emphasis on both the subjective experience of femaleness and disability and cultural constructions of that simultaneity, an equally significant feature of these texts is the challenge they present to feminist theory. These stories of embodiment go beyond simply critiquing the able, male body of patriarchy to confront feminism’s presumption of certain types of female corporeality, thereby rewriting the myths of self-control that problematically exclude some women from feminism’s theoretical and political agendas. Feminism has, historically, failed to engage critically with disability—with the physical or sexual limitations, the dependence on others, and even the pain and discomfort experienced by many women who live with disability and/or chronic illness.⁹ Feminist disability activists have argued that the early disability movement reflect[ed] the agenda of disabled men.¹⁰ But as Jenny Morris states, the interests of women with illness or disabilities are rarely incorporated in or are entirely absent¹¹ even from feminist analyses—of, for example, job and economic equality, health- and community-care access, domestic violence, and reproductive rights. It is perhaps an accumulated frustration at being left out of the discourse of feminism that compels sociologist Carol Thomas to cite the need for more detailed empirical research which starts out from what disabled women say about their own lives and to announce that the time has certainly come for disabled women to tell their stories.¹² Susan Wendell writes that feminism has worked to undo men’s control of women’s bodies, without undermining the myth that women can control our own bodies, and quotes filmmaker Bonnie Klein on a common sense of exclusion: I feel as if my colleagues are ashamed of me because I am no longer the image of strength, competence, and independence that feminists, including myself, are so eager to project. There is clearly a conflict between feminism’s rhetoric of inclusion and failure to include disability.¹³

As elaborated perhaps most notably by Rosemarie Garland-Thomson, disability theory can contribute in a direct and stimulating way to the development of feminist inquiry.¹⁴ The uncritical metaphor of women as disabled by patriarchal culture, for example, might be challenged to reconsider its use of disability as an inherently pejorative descriptor, just as the fundamental feminist critique of denigrations of women as deformed male bodies becomes more subtle when we examine the equation made between disability and inferiority. A disability perspective contests feminism’s dismantling of the institutions of marriage and maternity on the grounds that this enterprise ignores the kinds of stereotypes disabled women confront—that they are asexual and unfit for motherhood, for example, essentially incomplete in the basic expression of [their] womanhood¹⁵—and that the struggle for women with disabilities may thus be entrance into such relationships, rather than freedom from them. Disability theory complicates a feminist discussion of genetic testing and abortion by revealing the ableist assumptions that may problematically—even dangerously—influence reproductive choices. Feminist arguments about the ethical dimensions of caring can be expanded by awareness of the shifting roles of caretaker and cared-for so pertinent to relationships in which disability is a factor; disability scholars have rejected the feminist orthodoxy that caretaking is mere unpaid labour, performed out of duty, by women.¹⁶ A disability perspective enriches feminist inquiry into the politics of cosmetic surgery by demonstrating the ideological similarities between cosmetic and reconstructive surgery: both are efforts to normalize bodies by eradicating difference. Finally, feminist theorizing about the gaze can be extended by considering the intersubjective dynamics of the stare, the objectifying regard of the nondisabled for the spectacle and specimen of the disabled body.

If the concerns of women with disabilities have not been at the core of feminism, neither has embodied irregularity had much of a place in representations of identity that hope to escape confinement in the flesh. Disabled women have thus rarely appeared as the subjects of conventional autobiography, which tends to feature its narrator as pure consciousness, imagination, and memory. The subject that emerges from much life writing by women in recent decades, however, refuses many of the features of what we tend to think of as the typical autobiographical persona.¹⁷ Not a singular, male, white, disembodied I who pretends to a kind of transparent self-awareness, she may narrate herself in the relational terms of family, romantic partnerships, or group identity without presuming that the story of self will be guaranteed by any absolute characteristics—or, equally importantly, that the text of self must abide by the standards of sworn truth that have historically influenced, and inhibited, autobiographical production from the margins. The important work of many recent feminist autobiography scholars has examined the ways in which women’s life writing resists traditional patterns by returning to the body, explicitly representing the self in terms of such body markers as race, sexuality, class, motherhood, instances of physical trauma, and so on. Such texts talk back to dominant cultural paradigms and work to validate unrecognized categories of identity and experience.

Life writing by women with disabilities takes part in this larger pattern of storytelling that directly eschews the presumption of a fully accessible, distinct but also representative subject. But it also complicates standard ways of conceiving of the body that appear in women’s as much as men’s autobiography. Though women’s autobiography presents a significant challenge to the entanglement of narrative convention with patriarchal and/or racist cultural ideology when it puts embodiment at the forefront of the story of life development, that strategy often coincides with the assumptions of an ableist society. Despite their ideological and textual defiance, texts by women may uncritically idealize an able—if also othered—body: a healthy body, capable of pleasure; a body whose reproductive function can be controlled by the individual but is not societally suspect; a body able to sense and to move in normal ways and to manage (if also to celebrate) its messier functions; in short, an independent body, able to control and care for itself. By presenting themselves in terms of bodies that do not abide by many of these characteristics of corporeal experience, female autobiographers of illness and disability thus introduce alternative possibilities into the cultural conversation about embodiment, revising not simply the long history of autobiography by men but also much newer paradigms initiated by feminist thinkers and female autobiographers.

Women’s personal narratives of disability and illness, from this perspective, can fundamentally change the way we think about gender and disability, impairment, disease, and aging, as well as about the supposedly normal body that consolidates its borders against the demonized category of disability. It must be acknowledged, however, that the proliferation in recent years of personal narratives by people with disabilities has met with some skepticism by disability scholars concerned about the implications of pursuing the self-referential path of Western autobiography. As critics have noted, it is true that some life writers of disability (often though not exclusively men) follow conventional autobiographical patterns, styling themselves as unified, solitary subjects and reasserting the primacy of consciousness to assuage the sense of personal diminishment that may accompany a failed or broken body. Given autobiography’s devotion to narcissistic self-revelation,¹⁸ in David Mitchell’s words, a disabled life writer upholds the myth of rugged individualism at the risk of perpetuating another problematic fiction, that disability is a purely personal and physical, rather than social and political, problem. ¹⁹ Mitchell argues cogently that when disabled writers indulge a penchant for self-narration, they may obscure (perhaps unwittingly or inadvertently) the wider network of discursive, ideological, and material factors that constructs disability as a matter of individual responsibility or blame. Lennard J. Davis has voiced a similar caution, that by narrativizing an impairment, one tends to sentimentalize it and link it to the bourgeois sensibility of individualism and the drama of the individual story.²⁰

I hope to show in the chapters that follow the ways in which life stories about disability can shift the terms by which we collectively understand and respond to urgent questions of gender and embodiment. My own classroom experience has demonstrated time and again the profound and mind-changing impact of reading stories such as the ones discussed in this book—a subtle but significant alteration in the texture of the way a community thinks about issues of identity and the body. Many critics have endorsed first-person narratives of disability as crucial contributions to a project of rethinking relations between bodies and selves, subjects and societies. Like Siebers, Helen Meekosha and Susan Wendell also argue that contemporary disability life writing offers a kind of corrective to the perceived split between medical and cultural models of disability by returning the reality of the lived body to examinations of social forces. Meekosha claims that the rigid dualism of either a socially constructed disability or a disability grounded in biology is being disputed in the subjective discourse, and Wendell contends that careful study of the lives of disabled people will reveal how artificial the line is that we draw between the biological and the social.²¹ In his influential book Recovering Bodies: Illness, Disability, and Life Writing, G. Thomas Couser writes similarly that personal accounts of illness and disability are often motivated to recover variously dysfunctional bodies from domination by others’ authority and discourse, to convert the passive object into an active subject . . . to invalidate the dominant cultural tropes of ‘invalidity’—to demystify and destigmatize various conditions.²²

The texts I examine here are striking examples of what Couser has referred to as robust disability narratives,²³ first-person narrative acts that refuse cultural pressure to treat disability as an adversity to be overcome or an embarrassment requiring apology. They make clear that autobiography does not preclude, and indeed often fosters, the representation of social and political selves. Moreover, it seems important to bear in mind what such scholars as Sidonie Smith and Leigh Gilmore convincingly argue: that a woman does, in the very act of telling her own story, enter a political arena by asserting the legitimacy of her participation in a domain until quite recently dominated by the res gestae narratives of men. Couser’s argument, more specific to the matter of disability, is that the autobiographer’s access to the language of self-definition and claim of personal autonomy authorizes the self against an alienating medical establishment and the larger cultural ideologies that pejoratively encode physical difference. ²⁴ Turning to life writing as a medium for counterdiscourse that challenges stereotypes and misconceptions,²⁵ to quote Couser again, these several writers retrieve their impaired bodies from hegemonic medical discourse and from the margins of cultural acceptance, feminist inquiry, and traditional as well as some instances of feminist autobiography.

Dominant paradigms of identity—normative gender roles, myths of femininity and motherhood, attitudes toward sex and sexual orientation, and the articulation of these in the context of class, religion, regionality, and so on—obscure the needs, shapes, motions, and sensations of anomalous bodies. The tales I study here, by contrast, are motivated to reinvest the disabled body with a phenomenology predicated upon more than the rejection of stigmatizing assumptions. ²⁶ In the manner of much contemporary disability art, these life stories are "told through the body, in Arthur W. Frank’s words;²⁷ the specificity of each author’s anomalous corporeality shapes the tale she tells, exploding both the artificial coherence of disability and the mind/body binary that relegates embodiment to the prediscursive margins. These texts offer especially trenchant accounts of disability as what Mairian Corker and Tom Shakespeare have called the ultimate postmodern concept,"²⁸ writing disability as a dynamic, variable experience, determined both by individual expression and social, environmental factors. They are elaborated acts of defiance of medicine’s habit of reducing the whole person to a set of symptoms, and they respond to recent calls for a renewed focus on the embodiment of disability. In turn, these stories insist on autobiography as a capacious form that can accommodate a range of subjects and articulations of self.

Unlocking the Autobiographical Self: Katherine Butler Hathaway

Katherine Butler Hathaway’s 1942 memoir The Little Locksmith,²⁹ one of the first first-person accounts of a woman’s experience of physical disfigurement, reveals certain assumptions about disabled women that more recent writers often admit to having internalized: that disabled women are asexual, barred from participation in romantic or erotic relationships; that physical failure must be compensated for by an enlarged sense of spiritual or creative fulfillment; and that disability is infantilizing, rendering women helpless, literally invalid. At the same time, however, Hathaway also makes clear that she is aware of the impositions of cultural myth. Though she repeatedly acquiesces to the notion that a deformed woman is an undesirable one who must channel her passions into the romanticized roles of poet and maiden aunt (160), she also makes a steadfast attempt to liberate herself from a sense of childlike dependence and illegitimacy. Hathaway thus offers a set of interrelated points fundamental to my discussion of contemporary writers, demonstrating the tenacity of negative cultural interpretations of disabled women but also self-naming in a way that claims definitional control.

At age five, Katherine Butler contracted spinal tuberculosis (also known as tuberculosis spondylitis and Pott’s or David’s disease), a bacterial infection characterized by softening of the vertebrae and often resulting in curvature of the spine. As Nancy Mairs explains in her afterword to the 2000 reprint edition of The Little Locksmith, accepted medical practice at the time of Hathaway’s illness dictated that children be immobilized as the slow-moving disease ran its course, often over many years, to prevent kyphosis. Though a modern reader may be shocked at Hathaway’s description of the apparatus used to keep her back straight, it was, in Mairs’s words, the most advanced technology available (242) in 1895. Hathaway provides a striking image, writing that she was

strapped down very tight on a stretcher, on a very hard sloping bed, with [her] shoulders pressed against a hard pad. [Her] head was kept from sinking down on [her] chest . . . by means of a leather halter attached to a rope which went through a pulley at the head of the bed. On the end of the rope hung a five-pound iron weight. This mechanism held [her] a prisoner for twenty-four hours a day, without the freedom to turn or twist [her] body or let [her] chin move. (16)

She remained pinioned in this device, with brief reprieves, for ten years.

The memoir that begins with this vision of a child held captive—by physical restraints and by the power of medical authority—serves a liberating and redemptive purpose for its author. Hathaway makes quite explicit the connection between writing and her body, a link that results, perhaps predictably, from the absolute distinction she makes between the fearful fact of [her] deformity (42) and the free fearless aristocracy of the mind (44). Though she is pronounced healthy at fifteen and released from the straightening board, encounters first with a mirror and later with the reactions of family and friends inform her that there was something the matter with her still (61). Convinced that she has grown into a little, pitiable, hideous figure (47), Hathaway renounce[s] as illegitimate her greedy longing for experience (94)—by which she means romantic love but also, emphatically, sex—and takes up writing as her lonelier way of expressing herself and engaging passionately with the world (137). Though she survived serious illness and was described by at least one contemporary as handsome, slim and beautiful, and even a mermaid,³⁰ Hathaway persistently focuses on the catastrophic consequences of that survival to her body, and she depicts her desire to write as a compensatory act that very nearly stands in for sexual intercourse. She is one of the grotesquely un-beautiful women who must guard themselves against the absurd effrontery of imagining themselves to be desirable (55).

Hence the title of Hathaway’s memoir, its driving metaphorical figure of the locksmith, based on an actual locksmith who came to her childhood home in Massachusetts. This real person, whose back rose to an enormous sort of peak . . . between his shoulders (14), takes on symbolic importance as a manifestation of what might have happened to Hathaway’s own body. She recalls him as if he were a fairy-tale character: not big enough to be considered a man yet not a child (14) and, indeed, with his slender fingers and bobbing walk, more like a gnome than a human being (15). Yet Hathaway claims a powerful sense of affinity with this fascinating and singular individual:

Somehow I knew that there was a special word that the grownups called a person shaped like the little locksmith, and I knew that to ordinary healthy grownups it was a terrible word. And the strange thing was that I, Katherine, the Butlers’ darling little girl, had barely escaped that uncanny shape and that terrible word. Because I was being taken care of by a famous doctor nobody would ever guess, when I grew up, that I might have been just like the little locksmith. Staring wonderingly at him, I knew it. I knew that compared with him I was wonderfully lucky and safe. Yet deep within me I had a feeling that underneath my luck and safeness the real truth was that I really belonged with him, even if it was never going to show. (15)

The passage works hard to enforce contrast: the childish narrator is not a grownup; ordinary healthy people are not to be confused with that terrible word; and the uncanny realm of the locksmith lurks beyond the safe space whose perimeter is established by upright medical doctors and the edges of Hathaway’s stretching board.

Yet the boundary protecting Hathaway from the strange and terrible fate of this deformed creature is precarious, attributed first to the random machinery of luck and next to the intervention of science (embodied in a male, paternal, renowned physician). And ultimately, what is uncanny is also familiar; Hathaway recognizes the locksmith, with his downturned eyes and private world (15), as a mirror image of her own feelings of isolation and loneliness. She writes that she looked at him with a very strange intimate feeling (14) and felt a strong, childish, amorous pity and desire toward him, and she makes note of his queer erotic charm (15). Even more, he is indescribably alluring (14-15), unexpectedly—even improbably, given her young age and her own description of the man—seductive. What is at work in such language, I think, is Hathaway’s retrospective ambivalence about her own sexuality, her sense that there is something provocative, compelling, but finally repellent about difference, about deformity. She figures the locksmith as both a locus of her own desire for sexual experience and an analogue of her solitude, her sense of being irretrievably other, not quite a woman yet no longer a girl, somehow not quite human.

Locksmiths have a special talent, of course, for maintaining a different sort of device—not the one that keeps Hathaway pinned to a board throughout her childhood but, rather, the one that guards the thresholds of domestic space. The problem of broken locks, in one sense prosaically domestic, also signifies Hathaway’s conviction that her body, too, is broken, its size and shape an impediment to crossing over into adult experience and sexual fulfillment. Love laughed at me because my body was shaped like the locksmith’s, she writes much later in the text (166), but the answer I made was to unlock doors for everybody else while I myself remained a humble, submissive prisoner. Here, she refers literally to the house in Maine she buys with the intention of creating a kind of