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Journal of Bioethical Inquiry

, Volume 13, Issue 4, pp 473–476 | Cite as

Composing Disability: Diagnosis, Interrupted

Symposium: Composing Disability
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Abstract

Writing is central both to the medical diagnostic codification of disability and to disabled people’s efforts to interrupt, complicate, or disrupt dominant medical narratives. This Symposium, like the George Washington University conference from which it takes its name, creates space for diverse modes and genres of claiming authority regarding diagnosis and its cultural and material effects. “Queer” and “crip” interrogations of diagnosis illuminate its status as a cultural phenomenon, embracing culturally disavowed embodiments and embodied experiences as tools for diagnosing inegalitarian social relations and opportunities for cultural interventions. This Symposium traces the workings of diagnostic normativity manifested in experiences such as “disruptive deafness,” unstable bodily materialities, pathologized grief and other forms of affective distress, and “surgical assemblages.” It presents a diverse array of compositions, articulated on each writer’s own terms, addressing a range of embodied experiences through multiple genres and voices, ranging from conversation transcript to scholarly essay, poetry, graphic memoir, and personal essay. Here, laypersons interrupt monologic medical diagnosis, claiming space to compose themselves. Together, the authors trace instances of corporeal “correction” back to the noxious agents, both environmental and political, that consistently breach the boundaries of corporeality.

Keywords

Composing Disability Diagnosis Crip Queer Corporeality Embodiment 

A significant body of work in critical disability studies, medical humanities, and sociology of medicine attends to diagnosis as a cultural phenomenon: one that can reflect and reinforce societal norms through, for example, its conceptualizations, its differentials (who does and doesn’t receive a particular diagnosis, what medical treatments and societal responses do and don’t follow for whom), and the plethora of meaning-makings preceding it and proceeding from it. This Symposium brings to that conversation “queer” and “crip” interrogations of diagnosis, taking the recent appearance of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) (American Psychiatric Association 2013) as a point of departure.

Queer and crip perspectives embrace these culturally disavowed embodiments and embodied experiences as tools for diagnosing inegalitarian social relations and creating new alternatives. In Queer Crip Feminist, Alison Kafer “offer[s] a hybrid political/relational model of disability, one that builds on social and minority model frameworks but reads them through feminist and queer critiques of identity” (2013, 4). The medical model conceptualizes disability as pathology located in problematic individual bodies, while from a crip perspective, where and when any “problem” is associated with disability, it must be “solved not through medical intervention or surgical normalization but through social change and political transformation” (6). Kafer, like the authors appearing in this JBI Symposium, is not necessarily opposed to medical treatment related to specific disabilities, but they do oppose the discursive power of the medical model and diagnosis itself, its status as the ultimate truth of disability—its power to define disabled people and to structure their options.

This Symposium samples from the 2014 “Diagnosis, Interrupted” iteration of the Composing Disability conference series at George Washington University in Washington, DC, which examined these themes.1 The series emerged from a unique collaboration at The George Washington University (GW) between Disability Support Services (DSS) and Disability Studies faculty to foster disability culture on campus.

Much of this work has crystallized around composition, creating strong ties between DSS and GW’s University Writing Program (UWP), which is responsible for the first-year writing seminars required for all undergraduates, making it the only course that every disabled student takes.2 We secured a faculty position combining UWP teaching responsibilities with individual writing consultation in the DSS office,3 in keeping with Kimber Barber-Fendly and Chris Hamel’s calls for alternative assistance writing programs that produce “an underground help network” that “support[s] [disabled] students’ inclusion in writing classrooms while maintaining their privacy and dignity” (2004, 530). DSS and UWP strove to effect systemic changes in the ways that disabled undergraduate students navigate the university curriculum.

In addition to required writing courses, composition composes this curriculum, demanding that students compose themselves, in another highly significant way. For disabled students, it is often the DSM—the preeminent text that codifies disabilities of many kinds, widely used in preparing diagnostic disability documentation—that must speak medical truths about their intellectual and mental composure—or, more significantly, the lack thereof—to the educational system.

This process, however, is highly fraught, requiring an act of personal self-disclosure that is meant to highlight a diagnosed deficiency. For disabled students, equal access to education requires a public admission of some kind of “disorder,” to use DSM terminology. Such admissions imply that the students are not composed—that they are discomposed. That these exchanges traditionally happen in and through writing cannot be overlooked. In an educational system that relies largely on a medical model of disability, the written composition of disability documentation composes disability—and, ultimately, the student.

These complexities inform the Composing Disability series. As we noted, the competing pressures that eligibility puts on disabled university students—that they be independent self-advocates while acquiescing to being defined by medical authority—we sought to bring the energy guiding our alternative assistance writing program aboveground and to the forefront of the university’s educational culture. “Diagnosis, Interrupted” was timed to respond to the publication of DSM-V (American Psychiatric Association 2013), offering a venue for participants—including students and staff—to interrupt and interrogate the diagnostic industry’s ever-widening reach.4

This Symposium, like the conference, creates space for diverse modes and genres of claiming and reclaiming authority regarding diagnosis and its cultural and material effects. Through all kinds of debates and dialogues, the medical model still generally retains the status of ultimate truth (powerful, generally accepted) of disability; a diagnostic label therefore is the hidden nugget, the magic essence of a condition, a way of being in the world, that has been codified as a disability. In response, we sought varied ways of composing disability perspectives and identities, articulated on each writer’s own terms. The resulting pieces address a range of embodiments and experiences in multiple genres and voices, ranging from conversation transcript to scholarly essay, poetry, graphic memoir, and personal essay—together interrupting the monologic nature of medical diagnosis.

With “Symptom and Surface: Disruptive Deafness and Medieval Medical Authority,” Jonathan Hsy initiates this Symposium’s analysis of diagnostic work as a fundamentally written endeavour. The essay also broadens the historical reach of this Symposium by analysing a triad of medieval texts. Triangulating John Arderne’s De Arte de Physicali et de Cirurgia, Geoffrey Chaucer’s Wife of Bath (from The General Prologue to The Canterbury Tales), and Teresa de Cartagena’s Arboleda de los Enfermos, Hsy provides an intertextual interdisciplinary analysis of deafness that emphasizes how culture, which is embodied in the subject’s lived experience, can destabilize and disrupt the supposed objectivity of medical diagnosis. Hsy’s turn to medieval literary representations of disability is crucial because it helps establish an elongated history for Western diagnostics and cultural responses. Not wholly incongruous with the contemporary moment, Hsy claims, medieval culture offers practitioners in the medical humanities varied approaches to understanding human difference.

In four discrete selections from her long poem “The Hindrances of a Householder,” Jennifer Bartlett, like Danylevich (see below), considers the place of self in relation to the body’s unstable materiality. In doing so, she advances competing themes of construction and deconstruction, creating tension around notions of a “deeply flawed” and “odd” self. Here, both body and self are at risk of becoming objects, easily moved across the potentially toxic landscape of the city. In response, Bartlett conjures a type of “new materialism,” as invoked by Mitchell and Snyder (see below), where words and fish spill from partially deconstructed bodies, offering a rebuttal to the denial of self necessitated by Western diagnostics. There is room, she asserts, for a vibrant, complicated self, as the poem’s Joel uses remnants of a destroyed boat to bring the beautiful swamp boys to life. It is this moment of destruction and creation, paralleling a type of death and rebirth, which offers positive complications to diagnostic prescription, directing us instead towards a space where beautiful constructions inhabit “a city that is your mind,” and that offer the potential of “keeping us from longing, protecting us from want.”

David T. Mitchell and Sharon Snyder continue these examinations of porous materiality in their article “The Matter of Disability.” Tethering a Disability Studies perspective to a critical framework steeped in environmentalism, Mitchell and Snyder issue a call for disability scholars to be more attentive to new materialisms—to deconstruct the tacit boundaries between “humans, nonhumans, and inorganic materials.” Navigating terrain that traverses hospital operating rooms and sites of ecological toxicity, specifically Michigan’s Upper Peninsula, Mitchell and Snyder dig into the ligatures that tie together beings and their environments. Deploying their concept of “surgical assemblages,” Mitchell and Snyder seek to reverse the traditional trajectory of medical intervention—inward, into the supposedly damaged human body—so that occasions for apparent corporeal “correction” ultimately look outward to, and become directed at, the noxious agents, both environmental and political, that consistently breach the boundaries of corporeality. “Our bodies are not our own,” they emphasize, advocating for enhanced intersectional work between disability studies and environmentalism at a fundamentally material level.

In “Grateful,” Ken Jacobs threads fragmented language that serves to examine the intersections of disability, diagnosis, and identity. These fragments transport the reader across multiple spaces and systemic constructs, including those of race and class (“white Pantone pens”), ability, and treatment (“and loxapine/ or diazepam/ and oxygen”). Like Mitchell and Snyder, Jacobs questions the role and agency of the individual in navigating such potentially toxic environments, where both body and mind are positioned as conventionally not one’s own. In such an environment, the “trembling” self is “pre-empted” for its own sake, creating a tension between the aforementioned public and private spheres, where the individual is offered only prescribed and potentially toxic treatments: “temblor exchanged/ for thirst/ large green capsules.” The poem ultimately positions this tension as a question of value, with one’s personal convictions coming in conflict with those of larger constructs, which one often feels compelled to trust despite his or her misgivings.

In “Disability and Depression,” Ann Cvetkovich speaks with Abby Wilkerson, bringing Cvetkovich’s influential cultural studies analysis of depression explicitly into conversation with disability studies for the first time. Cvetkovich understands “feeling bad” (a term she prefers to “depression”) as a defining affective state under neoliberalism. Her book Depression: A Public Feeling challenges the atomism of the neoliberal medical model that frames depression and affective distress more generally as the result of faulty brain chemistry—individual organisms gone awry. Instead, she traces these common experiences to sociopolitical phenomena ranging from current neoliberal demands for productivity as exemplified in university life, to histories of colonization, slavery, and displacement.

Ellen Forney’s essay, “Bipolar 1 as Graphic Memoir,” underscores the central themes of both her graphic memoir, Marbles: Mania, Depression, Michelangelo, and Me, and her evening performance at the Composing Disability conference. The essay discusses the making of Marbles, specifically recounting the uncertainty she had with coming out as bipolar. While Forney ultimately affirms the self-empowerment that came from navigating the “dark, tangled forest” of diagnosis and finding company in others with shared experience, both the essay and accompanying comic panel depict the potential stigma and stereotype that can accompany diagnosis, reinforcing the social and cultural impacts that result from the medical diagnostic model, where even to be placed among greats—Woolf, Van Gogh, Hendrix—is to risk the backhanded compliment of being categorized and labelled as a “crazy artist,” if not worse.

Theodora Danylevich’s “De-Privatizing Self-Harm: Remembering the Social Self in How to Forget” contends that mental illness should be reconceptualized as a “public archive” rather than as a private “disorder.” In doing so, Danylevich uses Malu De Martino’s film Como Esqueçer (How to Forget) as a case study for demonstrating the fluidity with which the self—both in mind and in body—moves between the public and private spheres. Launching a provocative alternate reading of protagonist Julia’s self-harm, as depicted in How to Forget, Danylevich reads her as, essentially, a researcher, whose acts of self-injury are attempts to uncover the porosity of selfhood and the fleshy corporeality that is said to contain it. Selfhood, for Danylevich, is inherently relational, and as she argues, the unstable materiality of the body forces reconsiderations of the ways in which the diagnostic industry seeks to stabilize and isolate the causes and cures of alleged disorders.

Footnotes

  1. 1.

    The editors wish to thank our conference co-organizers, including Cathy Eisenhower, who also gave a name to this iteration of the series (and by extension this Symposium) and Robert McRuer. We are particularly grateful for generous conference support provided by Columbian College of Arts and Sciences, Digital Humanities Institute, Disability Support Services, English Department, Gelman Library, Office of Diversity and Inclusion, and University Writing Program; and the individuals who made this support possible, Derek Malone-France, Susan McMenamin, Terri Harris Reed, Rachel Riedner, Ben Vinson, and Christy Willis.

  2. 2.

    Limited exceptions are made for students who document successful completion of comparable courses elsewhere.

  3. 3.

    This is in addition to other learning specialists in the office, including another writing instructor with strong ties to UWP.

  4. 4.

    Though “Diagnosis, Interrupted” was formally held in April of 2014, the bulk of the event planning occurred as public and professional conversations about the DSM-5 were flourishing. We on the planning committee remained close to those conversations.

References

  1. American Psychiatric Association. 2013. Diagnostic and statistical manual of mental disorders, 5th ed. Arlington: American Psychiatric Publishing.CrossRefGoogle Scholar
  2. Barber-Fendly, K., and C. Hamel. 2004. “A new visibility: An argument for alternative assistance writing programs for students with learning disabilities.” College Composition and Communication 55(3): 504–535.CrossRefGoogle Scholar
  3. Kafer, A. 2013. Feminist queer crip. Bloomington: Indiana University Press.Google Scholar

Copyright information

© Journal of Bioethical Inquiry Pty Ltd. 2016

Authors and Affiliations

  1. 1.University Writing Program, The George Washington UniversityWashingtonUSA
  2. 2.The George Washington UniversityWashingtonUSA

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