Cognitive Disability Aesthetics

Front matter

Visual Culture, Disability Representations, and the (In)Visibility of Cognitive Difference

BENJAMIN FRASER

Visual Culture, Disability Representations, and the (In)Visibility of Cognitive Difference

Part Two: Cognition, Collaboration, Community

4 Visualizing Down Syndrome and Autism: The Trazos Singulares (Singular Strokes) (2011) Exhibition and María cumple 20 afios (María Turns Twenty) (2015) 97

5 Sequencing Alzheimer's Dementia: Paco Roca's Graphic Novel Arrugas (Wrinkles) (2008) 136

6 Screening Schizophrenia: Documentary Cinema, Cognitive Disability, and Abel García Roure's Una cierta verdad (A Certain Truth) (2008) 170

Conclusion 199 viii Contents

Notes 205 References 237 Index 259

Preface

Three book-length publications are arguably the foundational contributions to the study of physical disability representations in the aesthetic realm: Martin Norden's Cinema of Isolation: A History of Physical Disabilities in the Movies (1994), which traces the centrality of disabled characters in one hundred years of American film; David Mitchell and Sharon Snyder's innovative and foundational Narrative Prosthesis: Disability and the Dependencies of Discourse (2000), which privileges the nuances of literary disability representation; and Tobin Siebers's Disability Aesthetics (2010), which brought a similarly innovative thesis to bear on visual art forms, prioritizing painting and sculpture. Norden writes that "the history of physical disability images in the movies has mostly been a history of distortion in the name of maintaining an ableist society" (1994: 314). Mitchell and Snyder's book "argues that images of disabled people abound in history” (2000: 52) and that “once a reader begins to seek out representations of disability in our literatures, it is difficult to avoid their proliferation in texts with which one believed oneself to be utterly familiar" (2000: 52). Siebers's argument asserts that in painting and sculpture, the presence of disability is the element that has allowed “the beauty of an artwork to endure over time” (2010: 5). The representation of disability is, each text argues in its own way, thus central to the aesthetic histories of these directions in human cultural production. Often under-acknowledged as such in both literary and visual art, physical disability has long been clothed in the normative trappings of an able-bodied society and mobilized to suit a range of symbolic, metaphorical, and perhaps even purportedly transcendent artistic purposes.

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This direction in disability studies research has proven essential to an interdisciplinary field that is at once an academic and a political project (Davis 1997: 1). In launching a powerful critique of what Rosemarie Garland-Thomson (1997) termed the normate, it has extended the force of disability rights movements into aesthetic arenas where systems of social power and their consequences for bodily difference can be rendered visible, dissected, and critiqued - with implications for the extra-textual world, of course. In prioritizing aesthetics and cultural production, disability studies research has not only called attention to the value of textual analysis and humanistic work more generally, but also reasserted the materiality of culture and highlighted the imbrication of thought and action. Nonetheless, to the extent that such high-profile previous studies have privileged physical over cognitive disabilities, these invaluable contributions have left part of the picture unclear. To date, and speaking broadly, a certain invocation of the visible world has driven the study of both literary and visual representations of disability. That is, the concept of the visible in existing disability studies research is largely synonymous with the physical in a simple sense. The critique of able-bodied bias in film, literature, and visual art has tended to centre on the way in which the physical or material body - again, in a sense that largely marginalizes the cognitive — has been mobilized for another purpose. A visible trait, a mark, a scar, a missing limb, a deformity, a limp, a physical impairment ... in ableist cultural production, historically speaking, these are taken to be signs of evil, of corruption, of moral decline, and so on. Or, on the other hand, the exceptional body is problematically taken to be a vehicle to salvation or redemption in a process that symbolically others the extraordinary body in order to reaffirm the centrality of myths associated with able-bodied norms.

It is important to note that to date, in scholarship exploring the aesthetic realm, the physically disabled body in literature has been seen as a form or shape relating to a symbolic experience. Mitchell and Snyder write of disability in a range of specific works in which "the meaning of the relationship between having a physical disability and the nature of a character's identity come under scrutiny. Disability recurs in these works as a potent force that challenges cultural ideals of the ‘normal’ or “whole” body” (2000: 50). The books and essay-length studies that have directed similar insights towards specific instances of Anglophone literary and cultural production are too numerous to mention here. This research is important in its own right. It is equally important, however,

Preface xi to recognize that the social and political need for such academic work centred on the physical — and also its power and potential — stems from the need to respond to a very specific form of bodily oppression, one that is more visible in society than that involving embodied cognitive disability. The point is to understand the power and potential of this research on physically oriented disability while recognizing that it is an academic and political reaction to very specific social circumstances — and not necessarily an attempt to address all constructions of disability that obtain in society. That is, in seeking to combat able-bodied society's highly visible and historical marginalization and oppression of physical disability in particular, this strain of disability studies has largely focused on the appearance of physical disability throughout social history and in the aesthetic realm. The interplay between inner reality and outward appearance has been a key part of physical disability representations — as Norden, Mitchell and Snyder, and Siebers illustrate with reference to work by numerous authors and critics — and thus it makes sense that analysis of this particular interplay would be so essential to the social and political critique launched by disability studies in the period I refer to as the first wave of disability studies in the humanities.

Readers of this book may find it to be provocative on many counts. In identifying the need to pay more attention to cognitive disabilities as the defining characteristic of a second wave of disability studies, I join a growing group of scholars who in one way or another have called for a move beyond the physical orientation of much disability studies research. In addition, some readers may conclude that in underscoring the material reality of cognitive impairment as I do here - in seeing cognitive impairment not solely as a cultural construction but also as a material experience connected with biological or developmental factors — I sacrifice the strong constructivist tradition of disability studies. Moreover, my suggestion that an acknowledgment of the material reality of severe cognitive impairments can connect the social model of disability so strongly embraced in the humanities with the medical, clinical, and health sciences, may seem a betrayal to some. From the outset, I admit a friction and even a sharp divergence between the goals of a social model of disability and a medical model of disability. I nonetheless assert that a clean break between social and medical paradigms is neither possible nor entirely desirable when approaching the topic of cognitive disability, in particular regarding those experiences of cognitive disability that tend to be considered severe.

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As I am myself a cognitively abled scholar, this perspective may invite certain criticisms. Anticipating those criticisms, let me say that I can imagine a society in which it is not necessary for some to speak on behalf of those with severe cognitive disabilities, but that such a society is not the one in which we find ourselves. In this society there are populations who experience severe cognitive impairment and who are not able to communicate their needs in the way required by normative ableist power structures. While some members of these populations may have advocates and allies at the small scale, or at the larger scale in disability movements, there are many who do not. It is important to recognize that disability scholars in the humanities have not traditionally explored the social realities or cultural representations relevant to those with cognitive disabilities. Neither have they explored the distinct needs these populations may have related to severe cognitive impairments. My hope is that these provocations do not prove too much of an obstacle for readers. I believe that considering these issues through their appearance in social and cultural disability representations is necessary if we are to expand the scope and impact of disability studies in the humanities.

Itis important in this preface to take a moment to disclose my interest in and connection to disability studies. In the twenty-first century, the push to bring academic disability work in line with practices from the disability rights movement has evoked much discussion. An article in Disability Studies Quarterly (33[2], 2013) by Corbett Joan O'Toole, former president of the Society of Disability Studies (SDS), explores how practices of disclosure have differed across community and scholarly contexts, stating that "not to locate oneself is considered impolite — as if one's relationship to disability is unimportant. Within disability communities, acknowledging one's relationship provides valuable information to others in similar situations. It also shapes how people receive the presenter's information.”* O'Toole explores how scholars reacted adversely when they were invited to promote a culture of disclosure in the context of the SDS conference, and she warns that non-disclosure ends by affirming the marginalizing structures of ableism. Here I will take the opportunity to state that I am not disabled. I do so for two reasons: as a response to O’Toole’s call; and because this allows me to suggest that our perspective on impairment discourse delimits which material experiences of disability fall under the purview of the humanities and which are ceded to the health and medical sciences.

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My current interest in disability studies can be traced to two sets of circumstances that, taken together, reveal what I consider to be a productive ambivalence about the role of impairment in disability studies. First, I became interested in American Sign Language (ASL) and Deaf culture while completing an undergraduate double-major in cultural anthropology and Spanish as a BA student at the University of Virginia. I pursued this interest post-graduation as a non-degree-seeking student at Virginia, and then again, more intensively, during my MA and PhD work in Hispanic Language and Literature at the University of Arizona. During my time at Arizona, I took graduate courses that were conducted in ASL outside of my major area, with Dr Samuel Supalla, and - with the help of the Department of Spanish and Portuguese graduate director, who was a knowledgeable linguist — applied those classes as proof of the additional language proficiency required by my PhD program. I was also fortunate to work as a graduate assistant on a grant studying language acquisition in a comparative Spanish-ASL-English educational context. This all led to my first book publication, which was not my dissertation in the field of Spanish Language and Literature (later published as Fraser 2010c), but rather an edited and translated anthology of documents titled Deaf History and Culture in Spain (Gallaudet University Press, 2009). I conducted research for the book in Madrid with access to the archives of the Confederación Nacional de Sordos de España (Spanish National Confederation of the Deaf; CNSE) and also those housed in the Biblioteca Nacional de España (Spanish National Library) My intent was for the introduction and contents to reflect the values of the strong Deaf culture that existed in the United States and that I had come to know through coursework but also through Dr Supalla, other instructors of ASL, and culturally Deaf people (including children of Deaf adults or CODA) I met while in Tucson. This was a culture that differentiated between lower-case-d deafness, understood as an impairment, and capital-D Deafness, understood as a minority identity grounded in a shared visual language and cultural identity. On account of my exposure to ASL and Deaf culture, I did not think to apply a disability studies framework to this interest. Influenced by the values of a strong Deaf culture, I tended to separate a culturally Deaf identity from the issue of impairment entirely. I would say that I adopted the point of view that approached lower-case-d deafness through a hearing-centred paradigm emphasizing impairment and that approached capital-D Deafness through the paradigm of a minority culture possessing a distinct political identity.

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Second, my previous books Disability Studies and Spanish Culture: Films, Novels, the Comic and the Public Exhibition (Liverpool University Press, 2013) and Cultures of Representation: Disability in World Cinema Contexts (Wallflower / Columbia University Press, 2016) centred largely but not exclusively on cognitive disability because my brother in-law is a person with Down syndrome, intellectual disability, and epilepsy. He attends an adult day program, loves dancing, colouring, coffee, and flirting, and takes medications that are crucial to his well-being. He is healthy and able-bodied, quite strong when he wants to be, and capable of quick fine-motor movements that have earned him a playful reputation. He is minimally non-verbal, and because his intellectual disability is considered severe, it is difficult for him to communicate his needs to others. He also requires assistance with basic everyday tasks. It is because of my brother in-law's experiences that my previous work in the field has tended to focus on intellectual and developmental disabilities (IDD). In publishing articles and book chapters on IDD/Down syndrome representations in particular I have found there to be disconnects between the strong social model of disability studies, to which I have aspired in my scholarship, and its application to the realities faced by people with severe intellectual disabilities. As presented in the Spanish-made documentary film ; Qué tienes debajo del sombrero? (What's Under Your Hat; 2006), the case of renowned American fibre artist Judith Scott (who was deaf and had Down syndrome) also suggested to me that it was more difficult to apply the strong social model to severe cognitive disabilities. This does nothing to mitigate one of the disability movement's slogans "Nothing About Us Without Us" — italicized here because it is also the title of James Charlton's important book; nor the spirit of the volume by Paul Williams and Bonnie Shoultz titled We Can Speak For Ourselves: Self-Advocacy by Mentally Handicapped People. Put simply, however, the more I engaged in disability studies research the more I became convinced that those who cannot communicate their mind to others in concise, precise, or socially conventional ways due to issues of cognition — those like my brother in-law — were often being left out of the discourse of disability studies research and of scholarship in the humanities in particular. Accordingly, I am acutely aware of how infrequently humanities research speaks to my brother-in-law's life experience and needs. For this reason, when I look at the landscape of disability studies I see a field that might be more comfortable with discussing impairment and — perhaps more notably — a field that might become more interested in cognition. In this context, I will not adopt

Preface xv the point of view that fully separates impairment from cognitive disability - the latter understood as a label for a political identity or even a cultural minority identity — for such a view in practice excludes my brother in-law from consideration.

The two contexts I have related above have more in common than I fully realized. In point of fact, impairment is an important but complicated issue for both deaf/Deaf studies and disability studies, although historically it has been easy and perhaps even appropriate to ignore it (see Burch and Kafer 2010; Scully 2014). The risk in both cases has been to see impairment in terms that essentialize disability in a specific body, thus reaffirming the values of an ableist society and its marking of the non-normate. In deaf / Deaf studies, it is easy to see there is a connection between the discourse of bodily impairment and certain bodily modification procedures. The case of the cochlear implant is the clearest and perhaps the most significant example of the ills of such impairment discourse, and it may be easy for readers to see why the medical paradigm that at present disproportionately informs such impairment discourse is widely held to be suspect. The wider capital-D Deaf community takes cochlear implants to be dismissive of ASL’s status as a natural language, harmful and invasive both physically and psychologically, and to be the final act of a hearing society's colonization of the individual body (see Lane 1993). Similarly, an overindulgence in impairment discourse related to experiences of cognitive disability may suggest to some that cognitive difference needs to be "corrected" in the individual by encouraging the use of prenatal testing, surgeries, debilitating dependence on pharmaceuticals, or other invasive measures and colonializing attitudes. In both contexts, however, the practice of avoiding impairment discourse in humanities analysis produces an exclusion — and is in fact only made possible by way of that exclusion. That is, it may be easier to ignore the issue of impairment and advocate for a strong capital-D Deaf position when one excludes hard-of-hearing populations from consideration. Similarly, it may be easier to ignore the issue of impairment and focus on the disabling condition of the physical and social environment when one excludes cognitively disabled populations with severe impairments from consideration.

If we are able to sustain an encounter between the strong social constructivist model of disability and the medical, clinical, and psychosocial needs of populations with severe cognitive disabilities, I believe that the tenets of the social model of disability may in the end positively impact the way disability is discussed in the health and xvi Preface medical sciences. I take the position that in largely ignoring the nuances of severe cognitive disabilities, humanities scholars have ceded discursive control over cognitive difference to the medical and clinical fields. Bridging this epistemological gap requires a different way of thinking than has prevailed until now in the field of disability studies in the humanities. I do not believe that it will require a sacrifice. Some will undoubtedly disagree. As evident in the early portions of this book, however, I find encouragement in recent work by David T. Mitchell with Sharon L. Snyder (2015) and Lennard J. Davis (2013), as well as an earlier essay by Mark Jeffreys (2002), all of which push disability scholars to reconsider the material experience, if not also the material reality, of impairment.

This book also seeks to bridge another gap - that is, the distance that persists between Anglophone disability studies, on one hand, and disability studies in the Hispanic world, on the other. Although there has been much talk in recent years about the need to globalize disability studies, insufficient attention has been given to attempts by scholars in language and literature departments other than English to engage and influence the wider interdisciplinary field of disability studies. While this was not the case with my previous book on disability representations in Spanish cultural production - published in the Representations series by Liverpool University Press alongside titles focusing on the Anglophone world — my experience has been that academic publishers in general, unfairly I think, tend to see book projects focused on the Hispanic world as a niche market of their own. This viewpoint encourages some to pass on publishing opportunities even when those books connect with interdisciplinary fields. This may be changing as productive developments in Hispanic studies have seen a rapidly increasing spate of book-length texts explicitly engaging disability studies perspectives. The publication of monographs, edited volumes, and special sections by Susan Antebi (2009), Encarnación Juárez Almendros (2013), Matthew Marr (2013), Julie Avril Minich (2014), and Susan Antebi and Beth Jórgensen (2016), has been particularly inspiring for me in this regard.

My hope in the present book project is that readers from all fields will connect with the historical literature review and the theoretical chapters in Part I of this book, and that they will continue through the chapters in Part II that focus on Spanish cultural production but speak more broadly to questions important to the wider field. Parts of this work have been based on my previous article-length publications, although

Preface xvii in their present form they have been greatly revised and elaborated. Half of chapter 4 includes material from the article "Disability Art, Visibility, and the Right to the City: The Trazos Singulares (Singular Strokes) (2011) Exhibit at Madrid's Nuevos Ministerios Metro Station," published in the Arizona Journal of Hispanic Cultural Studies 17 (2013): 245-61. Half of chapter 6 includes material from the article “Battling Voices: Schizophrenia as Social Relation in Abel García Roure's Una cierta verdad (A Certain Truth) (2008),” published by Disability Studies Quarterly 36, no. 2 (2016), n.pag. (http:/ / dsq-sds.org /article/view /5007). The material republished from these article-length publications has been significantly recast, recontextualized, and further elaborated upon for the current purposes, and I thank those publishers for allowing the appearance in this book of that revised material. I also thank the three anonymous reviewers of this manuscript for their close reading of the text and suggestions for revision, which have led to a more polished final product. Last but not least, I am grateful to the Toronto Iberic series, and to its co-editors Robert Davidson and Frederick A. de Armas, as well as Mark Thompson and the production team at UTP, for valuing this discipline-spanning book project.

Visual Culture, Disability Representations, and the (In)Visibility of Cognitive Difference

Introduction

^While most of the work in the humanities to date has centered upon physical disability as its grounding object of study, one of the major new areas of research in disability studies will need to be that of cognitive disabilities." “Perhaps it is time to return to the scholarly suppressed topic of impairment." - David T. Mitchell and Sharon L. Snyder (2000: 39; 2015: 160)

A move is already under way to shift from a first-wave disability studies, focused above all else on the physical body and constructions of able-bodiedness, to what might be called a second-wave disability studies more willing to explore cognition and constructions of able-mindedness. Cognitive Disability Aesthetics seeks to outline this shift and underscore its potential — pushing this second wave of disability studies further by documenting the (in)visibility of cognitive disability in the theoretical, historical, and cultural realms. It provides a theoretical context for approaching representations of cognitive disability in humanities texts, and it analyses selected works of visual cultural production from Spain — namely, the documentary film, the graphic novel, and visual art in urban space. As this concise introduction makes clear, this effort necessarily brings readers into contact with certain tensions implicit in the histories of academic disability work and disability movements alike, tensions that are now reasserting themselves productively in disability studies scholarship.

Among the key questions that have not yet been resolved in disability studies are these: Are the insights produced by disability work emphasizing physical disabilities transferrable to work foregrounding cognitive disabilities? Are social models of disability compatible with explorations of impairment and medication? Do theoretical arguments that disability is a universal or a fundamental basis for human experience weaken the political force of disability advocacy and the potency of disability identity politics? Are struggles for inclusion over the short term compatible with a more radical agenda for social change over the long term? How might attending to cognition more explicitly change the tenor of intersectionality theory? Do studies of disability representations in the humanities require the development of different approaches to prose literature, on one hand, and visual media, on the other? Is it fair to expect studies of disability in global contexts — beyond the United States, the United Kingdom, and Canada, for example — to replicate (or, for that matter, to distinguish themselves entirely from) Anglophone disability studies? That is, to what extent should expectations vary according to regional, linguistic, cultural, national and disciplinary contexts?

These interlinked questions are addressed briefly in this introduction but do not figure as explicitly in the chapters that follow. This book does not aim to provide definitive resolution on such matters; instead it is content to chart out new sets of questions. Cognitive Disability Aesthetics asks readers to consider how a consistent focus on cognition has the potential to change the way in which disability representations operate and are analysed by research in the humanities. It also prioritizes visual representations as a way of connecting aesthetics with material experiences of cognitive disability. The sections that follow serve as concise snapshots of the key issues that motivate this book. They focus, in turn, on the return of impairment discourse in disability studies, the nuanced role of inclusion under neoliberalism, the impact and potential of intersectionality and approaches from gender, sexuality, and queer studies, and the arguable universality /specificity of disability. The treatments these topics receive are intentionally brief, and as readers will see, it is difficult to untangle each of these matters from the others. Before turning to chapter summaries, a final section asserts the value of humanities scholarship that crosses disciplinary as well as national, linguistic, and cultural borders as part of a global turn in disability studies.

The Return to Impairment

A concise history of disability studies would suggest that in both the academic and political realms the social model of disability has been asserted against the medical model of disability. This has been a powerful way of exploring the social constructedness of disability and thereby wresting discursive control over the experience of disability from ableist power structures. The social model of disability has long been synonymous with a strong suspicion of impairment discourse. After all, to focus on bodily impairment is to risk holding individuals responsible for adapting to a physical and social environment, when the push of disability studies should be to change the entrenched ableism that produces that same physical and social environment in the image of the constructed idea of the normate.

As two recent books have illustrated, there is a persistent ambivalence in the field surrounding the matter of impairment — not only its relationship to social difference but also its links to material experiences of disability. Reading disability studies monographs such as Lennard J. Davis's The End of Normal: Identity in a Biocultural Era (2013) and David T. Mitchell and Sharon L. Snyder's The Biopolitics of Disability: Neoliberalism, Ablenationalism, and Peripheral Embodiment (2015), one can observe that the notion of impairment is once again reasserting itself as a question to be explored. I focus on the work of Mitchell and Snyder in the earlier portions of this introduction and deal with the comments made by Davis towards its conclusion.

Itis necessary to make an observation and an assertion: I observe that impairment has not yet been considered specifically in terms of cognition by scholars in the humanities, and I assert that such consideration can be productive. The truth is that the issue of impairment - be it physical or cognitive — has been systematically neglected in disability studies research. The aura of suspicion surrounding it suggests that to invoke impairment is to obscure the social constructedness of disability. The reasons for this are well documented and familiar to disability studies scholars and disability activists. As Mitchell and Snyder point out directly as they reflect on the history of disability studies, the issue of impairment was distinguished from the issue of barrier removal early on precisely as a way to assert the social nature of disability (2015: 1). As the tradition of humanities work on disability experiences bears out, rather than risk essentializing disability within a body, it was important for academic work and disability movements alike to locate disability in the environment.! As disability scholars in the humanities know very well, of course, this push has gained force by focusing on the body as the site where ableist social and political structures become socially visible. This has frequently meant directing attention towards the appearance of bodies in humanities work: their shape, contour, outline, form, and so on. Nevertheless I would state that this primary focus on the shape and appearance of bodies, while playing a significant role that should neither be ignored nor be ceased, has tended to cast aside issues of impairment that might otherwise prove instrumental to a more capacious view of disability.”

This issue is important precisely because in opting to focus on the presence and appearance of physical bodies at the expense of a more thorough consideration of impairment, disability studies has cast aside the issue of cognition. Cognitive impairment, in the realm of cognitive disabilities, may not be merely an extension of the issue of bodily impairment, historically understood in relationship to physical disabilities. Returning to discussions of cognitive impairment today — in the context of a robust, decades-long, political and academic commitment to dismantling the structures of ableist society — need not indicate a move away from the strong social model of disability. In ignoring this issue, however, we risk condemning cognitive disability to a condition of both social and academic (in)visibility, and we risk ceding discursive control over experiences of cognitive disability from the humanities to the health and medical sciences. I contend that this is the very situation that one encounters today.

In the absence of a sustained consideration of how issues of cognitive difference impact existing disability studies methods in the humanities, cognitive disabilities are primarily a matter for the health and medical sciences to document, describe, and define? Consider Mitchell and Snyder's assessment that "disability studies as a field of inquiry has broadly come to agreement on issues of impairment. Whether through the assignment of interventions to embodied incapacities and inadequacies writ large, or by the application of “medical model” diagnoses of pathologized states, impairment is left on the other side of the boundary" (2015: 158). They specifically mention that "this strategic walling off of impairment from scholarly examination in disability studies has been largely accomplished through the excise of medical terminology" (2015: 158). If the humanities are to reclaim the discursive power to document, describe, and define cognitive disability representations within a sociocultural — and not a medicalizing — context, humanities scholars must become more comfortable, at the least, with the topic of impairment.* This need not present a challenge to the core principles of disability studies in the humanities, which tend to take "the very meanings of ‘disability,’ ‘impairment’ and disabled’ as contested terrain,”