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Shape stops story.

A Comment

"I would like to suggest," Rosemarie Garland-Thomson tells us, "that 'shape structures story' is an informing principle of disability identity" (113). In her essay in this volume, Garland-Thomson eloquently describes how our bodies tell stories, create stories.

Her founding principle--shape structures story--draws upon an essay by Caroline Walker Bynum about metamorphosis and continuity, about change as identity. Garland-Thomson's twist on this idea is best captured in her exegesis of Simi Linton's memoir of identity formation after her car accident: "Although her new shape is instantaneous, the new sense of self develops as a process that is simultaneously growth and healing. The recently impaired body pulls along the new sense of self, which resists and struggles as it reforms itself within a new community based on a shared sense of being in and relating to the world" (Garland-Thomson 119). The changed body pulls along the inner self, shaping and recreating that self in ways before unimagined.

The account Garland-Thomson gives us of shape structuring story may seem at first surprising. Initially her idea of bodies creating stories rather than stories creating bodies seems in tension with what is arguably a dominant narrative of disability studies--the idea that the social model of disability should triumph over the medical model.

The medical model views disabled bodies as bodies needing a cure, whereas the social model views disability as a social category created by the context in which we live. Under the social model, someone who cannot walk up stairs is disabled only because stairs assume one kind of body rather than another. As Simi Linton asks her students, "If I want to go to vote or use the library, and these places are inaccessible, do I need a doctor or a lawyer?" (120).

Whereas the dominant nondisabled culture tends to medicalize disabled bodies--always seeking a cure--disability studies focuses on the social context that renders certain bodies disabled. Garland-Thomson's rendering of disability as a shape that makes stories, rather than of bodies as constructed by storytelling, might seem then to invert the prevailing narrative of disability studies: the rejection of the medical model in favor of the social model.

On closer inspection, though, Garland-Thomson says nothing to embrace the medical model over the social. Her account offers nothing to suggest that disability is a state that needs curing. On the contrary, through the narratives supplied by the film Murderball and works by Cheryl Marie Wade and Simi Linton, as well as her own narrative of the tongue dance, Garland-Thomson celebrates the power of bodies beyond the "norm" to create beautiful and powerful stories, stories to be cherished, not erased through medical cures. As she tells us early on, the imagined narratives of disability and disabled bodies are typically not "pretty ones" (114). As collected and rendered by Garland-Thomson, they become not pretty but passionate, powerful, extraordinary.

Her essay climaxes with her description of the tongue dance, an elaborate dance begun by a colleague who is able to move only his tongue, and who therefore moves his tongue better than anyone. The original tongue dancer leads a train of aspiring imitators at the annual Society for Disability Studies dance, in a ritual that Garland-Thomson inscribes as the ethnic folk dance of the disability community. The dance--"the eroticism of [which] is lost on none of us" (121)--perfectly portrays the two themes Garland-Thomson teases out of her freshly positive narratives structured by disability: sexuality and community.

Garland-Thomson generously narrates the tongue dance for those outside the community of the dance. Drawing on the language of disability, she renders the dance "accessible" to outsiders (00[8]), implying that they too might participate vicariously. But ultimately the outsiders are not participants. Their function is instead to bear witness to this moment of sexuality and community, to the power of bodies beyond the norm to come together in new ways that far exceed the pretty. They are the imagined audience who will apprehend, for the first time perhaps, the "exuberant flourishing made possible because of rather than in spite of disability" (116). They will see the powerful energy and shared beauty that are well known to members of the community, but likely to surprise those outside.

The tongue dance also embodies an insight that arises from the interplay between the essays of Garland-Thomson and Ellen Barton. These essays show us not only the power of narrative, but the power of what lies beyond narrative. In their different ways, and in their intersection, the essays reveal a principle that may seem perverse but whose poignancy will, I hope, become clear in the pages that follow. That principle is shape stops story.


Ellen Barton presses for recognition of a different kind of narrative than Garland-Thomson. Barton wants us to see the narratives of frustration, failure, and surrender associated with disability, stories suppressed by the triumphant narrative of successful empowerment.

Barton focuses her lens on one context: federally funded disability support groups for parents of children involved with the special education system of the US public schools. Based on her careful firsthand study of these meetings, her essay details the way that disability support groups create a dominant, affirming narrative by suppressing competing, negative counternarratives.

Her challenge is broader than its context, though. Barton identifies what she sees as the dominant narrative of disability studies and disability rights--the narrative of an individual who attains an integrated and empowered sense of self as a rights bearer. For Barton, the counternarratives of frustration in her research are the kinds of narratives that get suppressed in the larger world of disability studies, not only in the support groups that she has studied so carefully. A key passage late in Barton's essay captures her challenge most starkly, meriting lengthy quotation:
   Now it is possible to explain away these tellers and their
   counter-narratives [of frustration and failure], as the facilitators
   do, by presuming that tellers who move to acquire an identity as an
   advocate will soon not have such counter-narratives to tell. This is
   similar to the way that disabilities studies scholars like Rosemarie
   Garland-Thomson and disability rights activists like Mary Jane Owen
   critique non-political identities as unaware and uninformed. But the
   efficacy of political awareness and advocacy is not the lived
   experience of several of the tellers here, particularly in the last
   set of narratives where informed advocacy seems to have failed
   completely. By denying the legitimacy of these
   counter-narratives--that a parent could be "at the end
   of my rope" or that she has been unable "to make the IEP
   work"--the discourses of disability narrow themselves
   down to a single narrative identity that insists upon a connection
   between advocacy and agency that might not always exist. (108)

Barton thus critiques what she sees as the dominance of certain affirmative narratives not just in the specific context of disability support groups, but much more broadly in disability studies and disability activism.

Barton understates her challenge. Curiously, she concedes to those she critiques that the form of (counter)narrative she locates as prevailing in disability studies scholarship--i.e., the positive counternarrative that supplants the dominant negative narratives and stereotypes--does not "become [a] dominant narrative[] ... in the exchanges of disability studies scholarship or the publications of the disability rights movement" (108). Yet Barton's critique seems to say that it is in precisely those locations that this preferred, affirmative (counter)narrative becomes a dominant narrative. Her point, as I understand it, is that these positive (counter)narratives become dominant narratives within disability studies, without being acknowledged as such by their proponents.

In other work on the disability support groups, Barton offers her own narrative of frustration. She writes:
   Ellen: I remember one IEPC that happened after I started this
   research. I went in loaded for bear. I mean, I had been to the
   support group, I had narrowed down to a specific request, I had my
   daughter ready. All I wanted was for the school district to provide
   15 minutes of bathroom supervision a day. Not even bathroom
   assistance. Just supervision, in case there was a fall or something.
   And I went into this meeting expecting to get it. I mean, I thought
   it was a reasonable request. My daughter had to have help in the
   bathroom or else she couldn't go to the school. So she couldn't get
   her education without this help. So I made the request at the IEPC.
   And they pulled out the Michigan rules book and said, here, here are
   the 7 things we have to supply for students in private schools. And
   personal assistance is not here. So they never provided it. And they
   even invited me to go to mediation so they could get a precedent on
   it. And I felt completely stupid. (Construction of Legal
   Consciousness 627.)

Barton's analysis of the disability support groups--as both participant and observer-leads her to her broad conclusion about the struggle between narrative and counternarrative in the disability rights community: "[O]ne reason parents might resist shifting their identities and stories to the preferred narrative and identity is not because they are politically uninformed but because their lived experience is emphatically denied in interaction [in the disability support groups]" (108). Parents may tell a new story--an affirming story--not because they become politically illuminated but because they are stopped from telling their stories of frustration.

Barton's sources are of course different from Garland-Thomson's. Barton is writing about the narratives of parents, whereas Garland-Thomson is writing about the narratives of individuals with disabilities. But Barton would surely say that stories of failure, counternarratives of frustration, are important narratives for people with disabilities, not just for their parents.

Garland-Thomson would, I think, agree. As Barton notes, Garland-Thomson's work gestures towards the possibility of frustration and failure as well. Garland-Thomson recognizes that individuals in the disability community don't always all "'work[] together'" for common rights (Garland-Thomson 120 qtd. in Barton 96). Indeed, her essay celebrates narrative moments that defy a traditional story of successful overcoming, as in her praise of Murderball as a film that "refuses the expected narrative of overcoming that infuses almost every positive story about disability" (Garland-Thomson 00[2]). Barton would presumably note, however, that Garland-Thomson is nonetheless looking here, as elsewhere, for the "positive story" about disability, although with a twist from its traditional version.

But Garland-Thomson is well aware that she is choosing some narratives over others. In the final pages of her Extraordinary Bodies, she admits a "bias" in her work. She avows her creative, constructive purpose: "This book imagines seeing disabled bodies in fresh ways: as extraordinary rather than abnormal" (137). By contrast, though Barton surely apprehends the extraordinary, she also worries about the narratives of the ordinary, especially the negative ordinary, that may be suppressed in their wake.

Barton and Garland-Thomson may therefore be understood to agree more than they disagree. They might be read simply to choose different angles to emphasize. To say this, though, would be both to overstate and to understate their affinity. Their essays reflect real competition between narratives, a struggle that is important and should not be ignored, a point to which I will return.

Moreover, I think their agreement goes further than this; indeed, in a way, their positions come full circle. Returning to Garland-Thomson's essay in the next section, we shall see that she takes Barton's critique of the uses of narrative one step further: a subtle strand of her writing forces us to consider not only counternarratives, but the limits of narrative itself.


The tongue is the vital organ of Garland-Thomson's essay. Tongues perform cunnilingus, they French kiss with a cleft, and they dance, communally and erotically. Tongues do everything but the obvious--speak.

Her essay is a story about stories, and yet somewhere within it is a story about the place where stories stop. Recall that her two themes are sexuality and community. Sex can be narrativized of course, as can community, but in Garland-Thomson's sources, these two sites also stand boldly as places where stories can be, but need not be, told.

As Garland-Thomson tells us, Murderball is "admirably restrained in its answering of the conventional 'what-happened-to-you?' narrative mandate of disability stories" (114). Instead, we get discussion about sex. Of course sex can be narrativized, but it can also be a portrait, a place of lust, desire, experience--a site of bodies moving rather than telling stories. (Note, too, that sport is similar to sex in this way.) And in the image of the young man from Murderball who tells us about liking to "eat pussy," which Garland-Thomson aptly describes as "life affirming" we catch a glimpse of tongues doing something other than talking.

Cheryl Marie Wade also shows us her tongue--here, her "French kiss with cleft tongue." Her tongue is sexual, and roughly, forcefully so. One of the identities Wade's speaker assumes is of a tongue that kisses rather than talks.

Most poignantly, Garland-Thomson's own narrative, of the tongue dance as well as of her childhood and fantasies, imagines a place where no stories need be told. The disability community is a haven from life among the "norms," where she often "feel[s] the burden of being the only one, the one who always has to explain, the one who is different" (116). Being different means constantly facing the mandate to narrate. The Society for Disability Studies annual convention is thus introduced as a communal escape from that burden.

And what happens in this place? A dance, a dance of the organ of speech. In the ethnic folk ritual of the disability community, the tongue becomes an organ that need not speak, but instead "curls, extends, sways, touches his nose, undulates, thickens, and wiggles" (121). In this communal erotics, the tongue has more experiences than typically imagined, but not one of them is speaking.

Garland-Thomson concludes by translating this fantasy to the outside world, so everyone might witness this ethnic celebration. As I mentioned, she tells us she's making the dance accessible. Yet something of this world cannot be accessed by those outside. As Simi Linton writes of the SDS annual dance, "I think the public is never likely to see anything to rival the SDS dance. The spontaneous, untamed, and untrained (for the most part) dancers, not necessarily mindful of the need for our art to 'communicate' to an audience or to make an interesting public statement, are in a class of our own" (153-54). This is a world unto itself, not created to communicate to the outside.

What Garland-Thomson makes accessible is merely a window onto this world. And what is perhaps most important about this world is that it's a place where no one has to explain. It's a world where the "'what-happened-to-you' narrative mandate" is nowhere to be seen. And more than that, such questions are not merely absent; they are strikingly, stridently, out of place. Even to think of asking such questions is to be out of bounds, to defy the conventions of this communal erotics.


This tension between the power of stories and the limits of story may be found in novel form in a set of competing theories of legal advocacy. I met these competing theories as a law student, when I was fortunate enough to learn about lawyering in the public interest from two outstanding lawyers and teachers, Jean Koh-Peters and the late Kathleen Sullivan. The context was a clinic devoted to advocacy for parents and children, though many of the lessons extended beyond that context.

Koh-Peters and Sullivan had opposing philosophies of lawyering on behalf of the parents and children we represented. Koh-Peters embraces what she calls a storytelling approach to legal advocacy. Storytelling has many virtues for the lawyer, among them, the value to the client of having her story, her side of things, told in court. Everyone has to hear how she views things, what she believes to be true. Everyone has to listen, at least through the voice of her lawyer, to her.

Storytelling has another function, perhaps even more important than empowerment: storytelling may have great persuasive force. The particularities of a client's story may permit an adjudicator to see past stereotypes, to see past preconceived ideas, to understand a client's position and embrace it. Koh-Peters writes, "In the pitched battles for justice today, telling compassionate, three-dimensional, nonjudgmental stories in the client's voice is a critical arrow in our quiver. Litigators and clinical teachers have long touted developing a theory of the case, the vision of reality that explains the contested facts in any given case.... Even if we only care about winning in the current scheme, we must tell more three-dimensional stories. In a straight contest between cartoon caricatures on the one hand, and a richly told story that resonates with personal experience on the other hand, the second will usually prevail" (23). Storytelling can crucially overcome stereotypes and create empathy with the client who needs the court to see her side, to take her side.

But storytelling isn't always a good thing. And the troubling features of storytelling are what Sullivan showed us. Sullivan endorsed a resistance approach to lawyering on behalf of her clients. (1)

Sullivan made her students keenly aware of the fact that some individuals, but not others, are forced by the state to tell their stories. As Koh-Peters explains the point, "some people in the world in which I work are asked to tell stories in much richer and deeper detail than others. My clients are forced to reveal details about their family lives that I have never been asked to reveal" (24). Courtrooms are familiar sites of the state's "demand for transparency" (Brooks 4), and of the lawyer's role in resisting the request for confession. Administrative and regulatory interactions produce a similar, though lower profile, demand. Such intrusions, disproportionately imposed on marginal and subordinated groups, might be understood as part of the law's "microaggressions" (Davis).

Sullivan therefore saw her duty as a lawyer to include protecting her client's privacy, protecting her client's right not to tell her story. Sullivan saw the lawyer as a buffer, a site of resistance to the state's demand for storytelling.

A puzzle lies at heart of this divide between Koh-Peters and Sullivan, at least for me, their former student. Koh-Peters and Sullivan were great friends and, from what I understand, the two rarely disagreed on how practically to go about the lawyering of a given case. The question that haunts me is, how can this be? How is it possible to resolve, even to unite, the divergent approaches of storytelling and resistance?

Though I do not know, I suspect that storytelling won out as the approach to use before the law while resistance formed a crucial supplement in client interactions beyond the law. That is, I imagine that Sullivan must have agreed with Koh-Peters that storytelling was typically the most powerful tool, and thus often necessary, for advocating on behalf of clients before legal authorities. But Sullivan's theory of resistance was a powerful way to make clients feel she understood and respected their desire to stop telling, their longing to stop story. And so the different approaches worked in tandem, both as powerful tools of the lawyer working to serve her clients.

Storytelling and resistance are powerful tools of the lawyer, and as the essays in this volume show us, they are powerful tools of individual identity. Garland-Thomson shows us the life-affirming potential of storytelling, its role in shaping disability identity, and its role in communicating that identity to the outside world. Barton then shows how those same life-affirming narratives can force a certain kind of storytelling, can create a mandate to tell one story and not another. In short, she reminds us of the need to respect other kinds of stories.

Ultimately, together, they alert us not only to the importance of telling new stories, and of telling challenging stories, but also to the occasional, yet vital, need to stop the stories. They call our attention to the overlooked moment when identity shapes itself by resisting the demand to tell stories.

This might be understood as a narrow limit on storytelling: the moment of resisting one specific type of story, the explanatory story that is demanded by intruding others. But the point also outruns this specific context. We can see its broader implications if we return to the event with which we began: the tongue dance, the evocative phenomenon that links the contributions of Barton and Garland-Thomson.

The tongue dance is not only a powerful story; it's a story about power. The tongue dance takes place in a communal setting where there is no need to explain oneself. It therefore represents the disavowal of a specific type of narrative demand. But the tongue dance is also an event, an all-consuming experience, an absorption in the moment that allows its participants to stop telling stories and simply to live.

The tongue dance represents the power of community to trade one kind of story for another, and even more, to stop telling stories when the music is right. Sometimes, shape seeks to, and must have the space to, stop story. (2)


Barton, Ellen. "The Construction of Legal Consciousness in Discourse: Rule and Relational Orientations Toward the Law in a Disability Support Group." Journal of Pragmatics 36 (2004): 603-632.

Brooks, Peter. Troubling Confessions: Speaking Guilt in Law and Literature. Chicago: Univ. of Chicago Press, 2001.

Bynum, Caroline Walker. "National Endowment for the Humanities Jefferson Lecture in the Humanities." Concert Hall of the Kennedy Center for the Performing Arts, Washington, D.C. March 22, 1999.

Davis, Peggy C. "Law as Microaggression." Yale Law Journa1 98 (1989): 1559-77.

Garland-Thomson, Rosemarie. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia Univ. Press, 1997.

Koh-Peters, Jean. "Habit, Story, Delight: Essential Tools for the Public Interest Advocate." Washington University Journal of Law and Policy 7 (2001): 17-30.

Linton, Simi. My Body Politic: A Memoir. Ann Arbor: Univ. of Michigan Press, 2006.

Murderball. DVD. Directed by Dana Adam Shapiro and Henry-Alex Rubin. New York: Think Film Co., 2005.

Owen, Mary Jane. "Like Squabbling Cubs." The Ragged Edge: The Disability Experience from the Pages of the First Fifteen years of The Disability Rag. Ed. Barrett Shaw. Louisville, KY: Advocado Press, 1994. 7-10.

Wade, Cheryl Marie. "A Woman with Juice." Available at < Juice.html>.


(1.) My sense of Sullivan's theory is largely secondhand, as Sullivan went on leave two weeks after she began to supervise me and my clinic partner, Renee Applegate. Though her compassion and intellect left a distinct impression on both Applegate and me, my sources for reconstructing her theory of resistance are scattered. Koh-Peters ran a class session in which she counterposed their two perspectives, calling them storytelling and resistance. I have my own recollections of this discussion, and I also thank Applegate for taking the time to try together to reconstruct what was said. Moreover, though Sullivan never published on the subject as far as I know, Koh-Peters has included some discussion of the resistance perspective--without naming it as such--in an article about lawyering in the public interest (Koh-Peters 24). Part of what I write here, then, is a kind of imaginative reconstruction of the story I think Sullivan would have told.

(2.) My thanks to Jim Phelan, Ruth Colker, David Herman, and the other conference organizers and participants for allowing me to participate in this conversation, and particularly to Ellen Barton and Rosemarie Garland-Thomson for composing such elegant and stimulating essays. Many thanks also to Barton, Robert Ferguson, Garland-Thomson, Sarah Lawsky, Phelan, and Cass Sunstein for comments on an earlier version of this essay.

Elizabeth Emens is an Associate Professor of Law at Columbia. She earned her JD from Yale and her PhD in English from King's College, Cambridge. Her recent article on discrimination against people with mental illness, The Sympathetic Discriminator: Mental Illness, Hedonic Costs, and the ADA, was published in the Georgetown Law Journal.
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Title Annotation:DIALOGUE; disability studies
Author:Emens, Elizabeth F.
Article Type:Critical essay
Geographic Code:1USA
Date:Jan 1, 2007
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