Introduction:
Thinking about Cognitive Impairment
Lucy Burke
The call for papers for this special issue was circulated under the title The Representation of Cognitive Impairment. Having come up with this fairly awkward combination of words, I was immediately struck–and continue to be struck–by the title’s inadequacy. A potential contributor pointed out both the dangers implicit in the concept of representation and the problematic implications of the notion of cognitive impairment. I absolutely agree with both criticisms. I guess I took it as read that any talk of representation within contemporary literary and cultural studies is circumscribed by an implicit recognition of the powers and dangers of so-called descriptive language. Certainly, the field of cultural disability studies is founded upon a constitutive critical suspicion about the uses and abuses of language and the ways in which particular models and tropes articulate the boundaries between typicality and atypicality, health and illness, normalcy and disability. As for the concept of cognitive impairment, I agree that it is inadequate in many respects. In terms of my own work on dementia, a sample of which will conclude this issue, to speak of impairment is a satisfactory way of describing a progressive condition that impacts upon cognition, attention, behaviour, language, and memory. But I am not at all convinced that the term is appropriate in any discussion of the autistic spectrum, or of schizophrenia (the conditions about which we received the majority of submissions, as the essays of Stuart Murray, Irene Rose, and Catherine Prendergast will testify). Both of these conditions encompass a range of personal and political identifications that the notion of impairment fails to express. In retrospect, I wonder whether cognitive difference, or cognitive disabilities would have been better terms. Perhaps the key point is that we have a political and ethical obligation to recognize the very fact that this kind of terminology is never adequate.
My intention was to find a fairly broad term that would generate as wide a response as possible, the aim being to establish some of the ways in which current research in the literary and cultural domain thinks about cognitive disability. Accordingly, in addition to autistic spectrum conditions, Alzheimer’s disease, and schizophrenia, this issue will apply the term cognitive impairment to learning disabilities, sympathy, and the inability to speak in essays by Chris Gabbard, Gavin Miller, and Heidi Krumland respectively. That said, in part the project is an attempt to address the fact that forms of cognitive disability have received comparatively little critical attention in the field. This claim is made with the notable exception of a rapidly expanding body of work on cultural representations of autistic spectrum disorders, more about which can be found in Mark Osteen’s Autism and Representation (2008) and Stuart Murray’s Representing Autism: Culture, Narrative, Fascination (2008), the book heralded by the first essay in this issue. Cultural disability studies has made a significant contribution both politically and intellectually to current critical and theoretical debates around the body and the concept of embodiment. This work encompasses the interrogation of a cultural tradition in which the disabled body is evoked metaphorically at the expense of the disabled subject (see, for example, Mitchell and Snyder, 2000) and the ways in which disability is mobilised in the articulation of the socially and psychically damaging and exclusionary concept of normalcy (Davis, 1995; Garland-Thomson, 1996). It also involves a complex engagement with the ways in which we conceptualise the relationships between mind, body, subjectivity and social identity. This question in itself has generated significant debate within disability studies as a whole, principally in relation to the capacity of particular models of disablement to speak to the diversity of responses to disability as a social, personal, and cultural experience and set of positive and negative identifications. I do not want to rehearse those debates here. (For an account of these positions see Williams, 2001). My point is simply to underscore the extent to which thinking about the body as both a physical and metaphorical entity is central to this field.
As Stuart Murray (2006) has pointed out, the critical focus upon forms of physical/bodily difference cannot fully accommodate the particular ethical and aesthetic problems to which the analysis of cultural representations of cognitive disability gives rise. This was part of the rationale for the special issue, an attempt to articulate some of the questions that attend any engagement with forms of cognitive disability. What does it mean, for instance, to represent someone who is unable to tell their own story, or to consent or refuse participation in a particular cultural project? How are we to engage with texts produced from positions of radical alterity or narratives that attempt to ventriloquise an unknowable form of cognitive difference? What kind of conceptual frameworks might we deploy to articulate the relationships between brain, mind, self and personhood in the context of conditions that are characterised by the impairment of faculties that are often held to be defining features of human identity such as language, memory, self-awareness, social interaction? To what extent do forms of cognitive disability problematise the rights-based model that underpins so much work in this field? An ethics of self-representation, individual agency and independence is certainly difficult to sustain in relation to a person with severe dementia or non-verbal autism. Thinking about cognitive disability, I would argue, requires us to work with a different model of dependency and individual identity, an important exploration of which can be found in the previous issue of this journal–namely, Michael Davidson’s Disability and the Dialectic of Dependency (2007).
Postmodern Conditions
I am also aware of a pressing need to engage with the sheer proliferation of cultural representations of cognitive disability. Autistic spectrum conditions, Alzheimer’s disease, and conditions such as schizophrenia describe very different kinds of disability, yet they share a certain cultural space, emerging into the disabling limelight of the twentieth century as attributions that seek to medicalise and to manage atypical and socially disruptive behaviours across the human lifespan. Although they delineate conditions that have long histories, their biomedical definitions all, coincidentally, enter into discourse in the early twentieth century, between 1906 and 1912. Eugen Bleuler coined the term schizophrenia in a series of articles translated into English in The Lancet in 1912 and used the term autistic in an article in The American Journal of Insanity (LXIX. 874) published in the same year (1950). Alzheimer’s was first described by Alois Alzheimer in 1906 but not reported until 1912 in an article by Solomon Fuller in The Journal of Nervous & Mental Disorders (XXXIX. 440). Schizophrenia is the first to enter into popular discourse. The OED records the first figurative use of the term in 1933 in T. S. Eliot’s Use of Poetry & Use of Criticism in which he discusses the incompatibility of poetry and philosophy: “For a poet to be also a philosopher he would have to be virtually two men; I cannot think of any example of this thorough schizophrenia, nor can I see anything to be gained by it” (99). Autism and Alzheimer’s, on the other hand, do not enter into the cultural mainstream until the end of the twentieth century, when they do so in epidemic proportions with an equal measure of media attention and social panic.
A diagnosis of Alzheimer’s dementia, an autistic spectrum condition or schizophrenia is more than simply a neutral correlation of particular sets of behaviours or deficits. The diagnosis effects an ontological transformation of its subject, immediately rendering one autistic, demented, schizophrenic. In reality all these conditions have a complex and more continuous relationship to the outer limits of normalcy than the attribution of a particular diagnosis implies. However, the biomedicalisation of these conditions produces not only new pathological subjects but also a whole range of social, economic, institutional, and cultural effects. In disciplinary terms, all three conditions have been at the centre of the institutional and intellectual development of the fields of psychiatry, psychology, and geriatric medicine. They are currently evoked to legitimate the ends of a range of ethically contested practices; all are the objects of emergent biotechnologies such as genetic mapping, magnetic resonance imaging (MRI) and positron emission tomography (PET) scanning (Dumit, 2003). All are central to the neuroscientific quest to identify genes and brain types in order–so the story goes–to find the ever elusive miracle cure. In social terms, they circumscribe a range of debates around the burdens of caring, the allocation of limited resources, the nature of contemporary family life, and social responsibility for vulnerable subjects. In bioethical debate, they frame an engagement with the definition and limits of meaningful life and personhood.
We might describe these conditions as forms of cultural production, then, as attributions that articulate and organise current anxieties around a whole range of issues from the ethical implications of emergent biotechnologies, the obligations of individual citizens with regard to their own health and genetic predispositions, to the social and emotional consequences of care-giving and dependency to name but a few. As diagnostic categories they produce new biosocial constituencies and political identities. Irene Rose’s essay will discuss the recent emergence of autistic autobiographies in this context, while my essay will address the ambivalent consequences of genetic research upon notions of self identity and familial heritage in Charles Pierce’s Alzheimer’s memoir, Hard to Forget. These identifications are contingent upon the transformation of the more diffuse significations of idiocy, retardation, senility, madness, although as Chris Gabbard will point out in his essay on the “I-word,” a residual rhetoric of exclusion continues to infiltrate “a progressive, post-ADA social agenda.” In a similarly cautionary mode, Catherine Prendergast’s essay will explore the political and critical consequences of the invocation of a particular notion of schizophrenia and the schizophrenic within postmodern theory. The essays by Gavin Miller and Heidi Krumland will underline the historical contingency of models of cognitive disability in their analysis of two twentieth-century novels–namely, Robert Jenkins’s The Cone-Gatherers (1955) and Carson McCuller’s The Heart Is a Lonely Hunter (1940). Both contributions will explore the significance of eugenicist discourse in relation to the literary representation of mental retardation. They speak to a particular discourse of cognitive disability that has been superseded (although not wholly displaced) by recent medical attributions.
Thinking about cognitive disability is inherently evaluative. These are postmodern conditions in a range of respects, not only because of the particular historical juncture at which they enter popular consciousness, but also because thinking about cognitive difference takes place in an interrogative mode. It involves an engagement with fundamental questions of value, of the definition and limits of the human, of personhood, of what makes a life worth living and protecting in legal, social, and emotional terms. In this domain, representation is never innocent. It materialises its objects as more or less human, more or less worthy of recognition, more or less different, knowable, or sympathetic. There is a great deal at stake here. People with cognitive disabilities are all too easily relegated to the margins of social visibility, denied legal recognition and subjected to the iatrogenic effects of particular diagnoses and the stereotypes they foster. In this respect, the kind of critical suspicion that defines literary studies is an ethical obligation. We need to interrogate the conceptual frames which underpin the production and circulation of narratives and metaphors of cognitive disability. We also need to address the ways in which these forms of cognitive difference radically challenge a whole range of normative models of identity, subjectivity, personhood, and embodiment. It is vital that cultural disability studies develops critical and theoretical strategies for encompassing cognitive rather than primarily sensory or physical differences. In bringing together current research in the area, the special issue attempts to do just this.
Works Cited
Bleuler, Eugen. Dementia praecox or the group of schizophrenias. New York: International Universities Press, 1950.
Davidson, Michael, ed. Journal of Literary Disability: Disability and the Dialectic of Dependency 1.2, 2007.
Davis, Lennard J. Enforcing Normalcy: disability, deafness, and the body. London, New York: Verso, 1995.
Dumit, Joseph. Picturing Personhood: Brain Scans and Biomedical Identity. Princeton: Princeton UP, 2003.
Eliot, T. S. Use of Poetry & Use of Criticism. London: Faber and Faber, 1980.
Fuller, Solomon C. "Alzheimer's disease (senium praecox): the report of a case and review of published cases.” Journal of Nervous and Mental Disorders 39 (1912): 440-536.
Garland Thomson, Rosemarie. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia UP, 1997.
Jenkins, Robin. The Cone-Gatherers. 1955. Harmondsworth: Penguin, 1983.
McCullers, Carson. The Heart Is a Lonely Hunter. 1940. Harmondsworth: Penguin, ca. 1995
Mitchell, David T. and Sharon L. Snyder. Narrative Prosthesis: Disability and the Dependencies of Discourse. Ann Arbor: U of Michigan P, 2000.
Murray, Stuart. “Autism and the Contemporary Sentimental: Fiction and the Narrative Fascination of the Present.” Literature and Medicine 25.1 (2006): 22-45.
---. Representing Autism: Culture, Narrative, Fascination. Liverpool: Liverpool UP, 2008.
Osteen, Mark, ed. Autism and Representation. New York and London: Routledge, 2008.
Pierce, Charles. Hard to Forget: An Alzheimer’s Story. New York: Random House, 2000.
Williams, Gareth. “Theorising Disability.” Handbook of Disability Studies. Ed. Gary L. Albrecht, Katherine D. Seelman, and Michael Bury. London: Sage, 2001. 123-44.
Editor, Dr. David Bolt |
Book Reviews Editor, Dr. Clare Barker
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