DISABILITY’S ‘PINOCCHIO STORY’: A MODERN CRISIS OF THE DISABLED IDENTITY

          When I was growing up, I always wanted to be someone else. Something else—some other creature in some other body with some other fate. For years I stiff-armed my sense of belonging to the disabled community, forever seeking some way out or escape tunnel into a perception of normalcy. Very often this manifested as some construct of masculinity: I dreamed of being a police officer, a soldier, a pro-athlete. I dreamed of nearly any other human form than my own body that could exemplify vitality at a biological or symbolic level. And I grew up angry because the narrative I sought for myself focused on goals which I thought I could not achieve. Like the wooden puppet Pinocchio, I wished to be a ‘real boy’. Today, I recognize this as my own personal Pinocchio story or Pinocchio syndrome, and finding a way to contend with the desire to eschew one’s real body for another is only a part of that condition. Another part, shared by Pinocchio himself, is the tendency to not only desire to escape one’s true form, but to have a tendency to falsify reality as well. Now I recognize that this particular anecdote is very personal and not universal. Certainly, not every disabled person sees themselves in Geppetto’s anthropomorphic carving, and while the fiction of Pinocchio is not my focus here, it does provide a gateway to understanding what I believe is a modern identity crisis in disability. When I encountered a recent study on the perceived benefits of the online space for the disabled, I began to realize that this Pinocchio-like desire to be ‘normal’ was widespread among the disabled.  The notion that disabled people appear to be increasingly contented to hide or flee from their status as disabled people was first revealed to me through Natilene Bowker and Keith Tuffin’s “Disability Discourses for Online Identities,” and it is this study that functions, for me, as an important first step in understanding that disabled self-representation and conceptions of disability today may be in crisis. My work here will move through Bowker and Tuffin’s piece in order to illustrate what I believe is a technology-induced identity crisis for disability. After recognizing this crisis, I will advance the belief—utilizing works from James Berger, Gilles Deleuze and Hans Reinders—that disability studies need an alternate theoretical approach to understanding disabled identity in the present time.

ANONYMITY, DISABILITY, AND SELF-DELETION

          In “Disability Discourses for Online Identities,” Bowker and Tuffin explore the possibility of the online or digital space for providing what they call a “levelling ground” for those with disabilities. In their study they posit three distinct criteria (“relevance, anonymity and normality”) as central for a study of real-life disability and the potentiality of digital spaces to create different cultures of disability (328). The focus of their study is to discuss the notion that identity and ontology are each extremely informed by visuals and visibilities of body, and that the digital space provides new potential ways for reworking selfhood and identity because it, in part, hides the visual. The article states that online spaces can provide “a subjectivity removed from impairment” (335). This claim gains some clout in the words of their participants. For example, one participant, named Daphne, suggests that disabled people should “enjoy the fact that” when one is “on-line you can be whatever you want to be” and “your disability need not be an issue” (335). Moreover, Bowker and Tuffin themselves admit that there is a “level of freedom and flexibility” provided by the online space (335).  But while the online space is promising, what is really being said here is both striking and frightening to me as a disabled man with cerebral palsy, because it suggests that disabled people are seeking to evade their identities rather than embrace them. What speakers like Daphne and writers like Bowker and Tuffin are suggesting, in short, is that there is something worthwhile about a kind of deletion, cloaking, denial or disregard of the physical or embodied self. In fact the study by Bower and Tuffin suggests that an integral portion of their approach relies on perpetuating and defending the “choice to disclose” one’s disability among their test subjects (333). Noting that one can achieve freedom by using the online realm to “present a chosen identity” (337) rather than working within the reality of the identity that is constructed, in part, by the truth of a disability, the article summarizes the potential for digital spaces to provide disability with a space where one’s “subjective experience can move away from disability” via the digital interaction (336).

          One participant, known only as Bridgette, suggests that the “anonymous element” provided by the online space is “good” because it denies others the opportunity to identify her as disabled, but also because not being able to “see me” means that they “probably (…) don’t get the full impact of my disability” even when she chooses to disclose it (336). While “anonymity is relished by Bridgette” for allowing “assumptions of normality” to occur in the digital space, the fact that Bowker and Tuffin’s participants consider the complete, if temporary, erasure of the body alongside a hesitance to ‘disclose’ one’s state to be a benefit is remarkable and concerning (336).  As I contemplate the potential of such desires among the disabled, I must ask: Do we really want to just ‘be normal’? Is our only goal to relinquish the impact of our identity, so we can fit neatly and quietly into a majority? If so, then the disabled identity faces a fascinating crisis, housed in an exponentially growing and important medium, no less.

          The notion that one should not only be comfortable with but also “relish” (340) the darkness of digital anonymity because it provides the chance to “present a non-disabled persona” or render disability as temporarily “irrelevant” is essentially the same as having the desire to erase reality and invalidate the disabled self as positive (335). Readers and participants like ‘Daphne’ and ‘Shaun’ may understand the notion of ‘non-disclosure’ carried by the digital space as establishing some kind of equality (335), but it is only an equality borne out of dishonesty, and in that it is scarcely equality at all. It is, in the end, a desire for bodily deletion and a practice of dishonesty that, while indirect, are both none too different than my own anecdotal confessions about a desire to depart my disabled identity, or Pinocchio’s own identity struggle.

          The appreciation for the concealment of disability is not a new phenomenon: Jeffrey A. Brune and Daniel Wilson wrote a book on the very concept of disability’s history of “passing,” claiming that “people conceal social markers of impairment to avoid the stigma of disability and pass as ‘normal’” (1). While this act of concealment is central to disability’s entire history in social spaces (1-5), Brune and Wilson suggest that the disabled history of passing has been only rarely discussed, due to widespread reluctance amongst scholars to consider disability “as an analytic category alongside others [like race, gender or sexuality]” (2). This lack of desire to discuss disability’s pull toward concealment or our belonging to analytic categories only heightens the stakes of disability passing.

          One of my major concerns in this piece is the way in which disability passing reaches the digital realm and is championed by disabled people themselves. Earlier I referred to the article by Bowker and Tuffin as suggesting disability’s own desire for self-deletion. While doing so no doubt marks my words as a biting condemnation of the act of passing —and this kind of condemnation is something Brune and Wilson will not do (4-5)—Brune, Wilson, and I at least agree that while any form of passing can help disability appear as a “dynamic” identity, it is also clearly a contentious and destructive core tenant of the disabled identity because it “expresses, reifies and helps create concepts of normality” (4). And as this paper will argue, the digitalization of the practice of disability passing and advances in our technological future suggests that we disabled people are facing a larger identity crisis than ever before.

          The praise heaped on digital mobilizations of disabled passing is one kind of theoretical crisis brought forth by technology, but it is not the only such crisis disability faces. Disabled scholars like Hans S. Reinders and Marsha Saxton both discuss the potentially dire future of the disabled. Reinders writes that parents of unborn disabled children continually face a bioethical drama in wishing to ‘fix’ what is ‘broken’ in their unborn children when increasing leaps in technology allow for the possibility of potentially ‘screening-out’ and deleting the child’s disability altogether (Reinders 57-65). It is as if modern mothers and fathers themselves feel that they must scramble to ‘save’ their sons and daughters from the promise of physical or mental exile that lingers over each individual’s disability. Indeed, as Saxton suggests, the disabled subject position as a whole has perhaps never been in more tension than it is today, suggesting that “at this point in history, the decision to abort a fetus with a disability even because it “just seems too difficult [to care for] must be respected,” considering that as a society we have lost the ability “to appreciate and support people” (95-96). This inability to support the disabled, combined with the increasing possibility of screening-out disability, places us in a precarious position at best, almost as if the disabled is either to be always-in-exile or figured as something of an endangered species of human going forward. At the very least, the disabled people continually seem to have to contend with the question of leaving ourselves or our overall identity behind, whether because we internally desire it, our parents wish it, or our society tries to usher us toward it.

          And more, I believe that even if we disabled are not being ushered toward some sense of abandonment of our forms, the abandonment is embedded in us. I recently posed the question to my parents as to whether or not they would have deleted my disability if they had the chance that Reinders describes. My father was quick to answer, struck with the certainty of making a “better life” for his son, while my mother hesitated a touch more, wondering if I would be the same person if I were not disabled. Indeed, I agreed with her hesitancy and regarded the disability I have as an essential ontological impetus for who I am today. Regardless of whether our disabled selves would be ‘better’ or ‘worse’ if we were able-bodied, it is clear to me that the disabled reality is core to our identity; and yet the very existence of that reality and identity can be put under question in the kind of technological future that Reinders and Saxton discuss. Such future presents itself as part of disability’s crisis of identity, while the study by Bowker and Tuffin provides a specific and contemporary instance of that crisis. As such, by advocating for the value of non-disclosure via technology, in a time when medical technology may be our greatest threat, we disabled risk aligning ourselves with a future of self-deletion that we tacitly endorse through our elation toward technology’s capacity to hide ourselves. This fragmented and at-risk sense of identity common to disability can be clarified further looking at the work of Deleuze and Guattari.

DISABILITY AND DELEUZE, IN BRIEF

          To begin with, in A Thousand Plateaus Gilles Deleuze and Felix Guattari imagine a book as an assemblage and in doing so imagine the way in which pieces and fractions are mobilized to make a whole. More importantly, in the process of this assemblage explanation, they write in a manner that links identity to it: “We are no longer ourselves. Each will know his own. We have been aided, inspired, multiplied” (3). Regarding the book, the two claim that it “has neither object nor subject; it is made of variously formed matters, and very different dates and speeds. To attribute the book to a subject is to overlook this working of matters, and the exteriority of their relations. It is to fabricate a beneficent God to explain geological movements.” They continue and suggest that:

[I]n a book, as in all things, there are lines of articulation or segmentarity, strata and territories; but also lines of flight, movements of deterritorialization and destratification. Comparative rates of flow on these lines produce phenomena of relative slowness and viscosity, or, on the contrary, of acceleration and rupture. All this, lines and measurable speeds, constitutes an assemblage. (3)

          While this understanding of an assemblage and the book is fascinating in itself, where I desire to go is not to this construct, but rather the construct of the body and the question of identity as it relates to disability.  Certainly Deleuze and Guattari see something of the identity lurking in the weeds of the assemblage, but it is almost something contradictory. Initially the two writers suggest that while we have “been aided, inspired, [and] multiplied” by the assemblage, “we are no longer ourselves” because of it. It is a curious kind of aid or inspiration, indeed, if it infects us to such a level that we lose our selfhood. But, not even that extreme state of loss exists for long, because in the very same sentence about the loss of self Deleuze and Guattari claim that still: “Each will know his own” (3). Paradoxically, the Deleuzian human is “inspired and aided” to become something that is somehow not him or herself anymore while also being knowable to him or herself in some way.  If there could be any basic form that lives out this kind of existence, to me, it is the disabled person who exists in this sort of fractured selfhood that is always-already in the state of not being itself in one sense, as much as the disabled self ultimately knows itself and what it is innately. In this way, the disabled self is perhaps also the Deleuzian assembled-and-fractured self par excellence. This understanding of the disabled self seems both in league, and at odds, with the disabled Pinocchio crisis, but in order to express this I must provide an understanding of the ontological fracture that disability faces by turning to James Berger’s work on disability’s place next to apocalyptic ideas.

THE DISABLED ONTOLOGY OF DAMAGE

          James Berger spends much of After the End dealing with the trauma and negative potency of the post-apocalyptic sentiment birthed by the Holocaust. However, while grappling with the notion of catastrophe, Berger recollects a childhood association with disability as a kind of training ground for understanding apocalyptic sensations. In his contemplation of what it means to live in a world that is defined by its own catastrophic schism, Berger briefly touches upon his two disabled sisters, whom he calls “mentally retarded” (3). Berger’s rumination upon his two sisters, who “cannot talk” and “cannot live independently,” very quickly lead to the notion he had as a child: the feeling that “something went wrong” with his sisters and that “nobody was quite sure what” (3). Thereafter Berger crafts a notion of schismatic damage I find so stern, certain, and frightening, that we can understand disability as a state of being which must admit at its core a kind of split in which we become the truly schismatic or fractured-form that Deleuze attempts to gesture towards. Having developed a notion that something “went wrong” with his sisters, Berger writes:

And so I came into consciousness with a certain knowledge about catastrophe. I knew that it was possible that it existed. I knew that catastrophe could even be indistinguishable from a secure and happy life. My sisters were my sisters. Other people had sisters and so did I. And my sisters were damaged. I came out of infancy, into consciousness, in the wake of an originary catastrophe (…). My sisters’ fates—or is it better just to say their lives—are somehow unspeakable. They cannot speak them. And I can only speak around them.  Defining their outlines with a surface of words. (3)

          For a younger would-be scholar stumbling in the dark of a disabled identity, the power of this passage and its implications upon discovery was comparable to a lightning bolt cracking through the night sky. At one point, I could imagine nothing worse than an alignment with catastrophe or an admission of damage, and the stern sincerity of Berger’s words was thunderous enough to send my head spinning and heart racing in fear. I recall pouring through book after book for a contrary reading to Berger—some balm of redemption that could save us, save the disabled, save me from such associations with disaster. However, I eventually came to realize that this kind of thought may become essential for disabled identity, because if we fail to embrace the realities we face as highly diverse humans, what becomes of us is a slow and steady erasure. Even if we cannot erase ourselves through technology, screen ourselves out, or realize how close we stand to exile, then there will be those like Berger who will make the clever move of comparing his duties to his sisters as consisting of being a kind of ‘outline speaker’ for them. Indeed, this capacity reminds Berger of the concept of “circumnavigation” put forth by Søren Kierkegaard in which one “maps unknown territory by circling around it” (qtd. in Berger 3). However, I must implore the reader to pause a moment and consider the remarkable position that Berger and his sisters have helped us, just now, to unearth and fortify.

          Here, I see a version of identity that Deleuze and Guattari dole out in the opening pages of A Thousand Plateaus. That is, in this way the disabled could be perhaps precisely the creature that is ‘no longer [itself]’, having an identity that is necessarily ‘aided, inspired’ or even smashed into what it is (disabled) versus what it might have been had the catastrophe never occurred, via that catastrophic moment of taking-on their disabilities. And indeed, as if to fit the form of Deleuze and Guattari’s image of the self at the start of Plateaus too well, Berger’s own experience vouches for the disabled person as a kind of known unknown—an identity and a reality that is “originary” and within itself immutable, and yet “speechless” and only vaguely navigable to anyone outside of it (Berger 3). In this way, the disabled self is, in its kind of deep alterity, necessarily known to itself in a manner reminiscent of that quip that “Each will know his own,” even if they are not who they once were (or might have been), but are instead ‘inspired’ into a new creature by the catastrophe of their state (Deleuze and Guattari 3).

          If we understand that a basic image of identity in Plateaus is this kind of known-unknown altered self, and we recognize that disability can sit as the perfect figure for such a portrait, we can recognize that what is of import for us is that the disabled issue today—as we can see it via Reinders, Saxton, Berger, Bowker and Tuffin, and Deleuze and Guattari—is an issue that very much centres on a crisis of identity, deception, and the desire to be something other than what we are, with the ardent reality being that such a pursuit would demand the annihilation of disabled identity and suggest our complicity in that end. It is this kind of crisis and ontological break that leads me to imagine the disabled position today as one which is necessarily exilic, even if it never is forced to leave its physical home, and finding the disabled person in the exile will help fully contextualize this perceived crisis.

THE DISABLED EXILE TODAY

          While Mimi Thi Nguyen’s chapter on “The Refugee Condition” in The Gift of Freedom focuses expectedly on the refugee, she also advances a sense of the other and addresses a notion of the body that can help us read an exilic reality for the disabled, which is key to understanding our aforementioned crisis. Nguyen speaks of trauma theory, and calls to Hannah Arendt’s tendency to “resort to a figurative vocabulary of illness to represent the stateless peoples cast adrift in the aftermath of world-shattering war (60). She argues that, “functioning metonymically, even tautologically, the stateless person is like the mentally ill, because his or her mindset is disturbed (…) [and] outside of reason” (60). She continues in parentheses to equate the refugee to the “ostensibly mentally ill [who] is involuntarily isolated because [they] are not considered able to judge and act according to norms” (60). In this way, Nguyen links “traumatic consciousness to political expulsion [and] a shared negativity of reference” (60-61) and we must mark these elements along with the notion of ‘involuntary isolation’ as potential expressions of exile, and further as expressions that allow the exilic experience to go beyond the nation-state, the traditional sense of the refugee, and the notion that exile requires leaving a place or losing citizenship. Nguyen even describes the refugee as being trapped in a “medico-juridical” structure of judgement that names “abnormality” and “alienability” openly (61). These abnormalities, Nguyen notes, coalesce to form a “refugee condition” which can be understood as a “psychic-political” subjectivity based on a social ‘suturing’ of several ‘shortcomings of the self’ including “criminality,” “abnormality,” and “disability” itself (62). These three aspects of difference belong to a kind of collective ‘condition’ which Denise Ferreira da Silva terms an “affectability” (qtd. in Nguyen 61). Nguyen summarizes this “affectability” as a subjection to the power of “natural conditions” and “others’ power” at once (61). And yet, while Nguyen goes on to say that the refugee condition is a “fictive” construction of colonialist ideologies (61-62), the condition of the disabled, I would argue, is perhaps even more profoundly lodged in Denise Ferreira da Silva’s notion of affectability than that of the refugee, and it hardly seems fictive. The crises that disability faces in the body are as real as the crises we face in own identity deletion via acts of disability passing, which continually threatens to place disability in as “unstable” a position as any refugee (Brune and Wilson 5).

          While nations, empires, and political institutions parley back and forth with endless new practices, policies, and systems of representation, the most constant vessel in the human experience has been the human body. And while the way we regard and value the human body changes as often as a democratic nation’s political leaders, the human body itself still remains as a kind of indivisible building block that we cannot yet transcend nor avoid being born into. Political thinkers like Hobbes and Rousseau have hypothesized about a time of pre-government and perhaps the ‘pre-political’ via State of Nature theories, while modern thinkers imagine a kind of post-human future[1] that is in some way after bodies. But there has never been a time in which the historical human-proper has existed in a kind of pre-biological or pre-body state, if you will, nor has there been a time in which we have been truly or permanently able to depart the body while still living. As one of the single undeletable criterion to be human, then, residence in the human body and the experience of that residence in the human body occupies an undeniable primacy that goes beyond (and runs before) the properly ‘political’ or even the first established polis. However we choose to value the body, today the truth therefore remains that any contemplation, condemnation or proposed re-valuation of the human body is by nature truly a ‘constitutional’[2] kind of move (with all the gravity implied), for the body is the single system (political, social, and biological) which has been present since our species began.

          Taking the primacy and potency of the body in hand, I believe it is possible to regard the disabled person as perhaps the most precariously positioned person in our history. Why? Because disabled people are not only attempting to find ways to hide themselves in digital spaces as I outlined before, but they are also subject to an exilic and schismatic sensation at the very foundation of the body. To see this, we need only look to Reinders’ bioethical discussions on screening babies, or the work of James Berger, who helps us understand the disabled form as being one of ontological damage or displacement.

       While Berger’s sisters provide a useful way of understanding a notion of circumnavigation, they also bring us into a head-on collision with the disabled exile that is unavoidable, and the result of such a crash is brutal. After all, through Berger we have come to know a pair of humans that, at the very ontology of their identities, are locatable as a kind of ‘negative wrong’ (Berger 3). They are removed, moreover, not merely from state but from the state of self and self-contemplation that would allow them the ability to not only speak but to contemplate their own fates in the larger scale. Like jailed refugees that must attempt to retain their unalienable rights in a foreign land by use of a foreign lawyer, Claudia and Susan can barely advocate for their own lives and cannot utilize their own voices. Instead, because of their disabilities, they must entrust their practice of speech to a brother who can only skirt the edges of their reality and who claims them to be educational entities toward catastrophe and the unspeakability of trauma. Beyond being beholden to such a mode of speech, they are, in short, part of the refugee condition forwarded by Nguyen that speaks them as abnormal and writes them as definable by their medical conditions. Claudia and Susan, in this sense, are placed into a kind of juridico-medical paralysis in which they cannot speak nor seize their own independence, nor escape their diagnosis or bodily reality. What is more, this sort of schismatic exile is said to have happened at their very becoming—at that moment of their birth in which Berger regards that “something went wrong” (3). And once their brother James comes to understand the sense of catastrophe that their disabilities are able to impart upon him, the best he is able to do is vaguely outline an unknown territory in order to approximate a speech for his sisters (3). With all of these aspects considered, I can see no definition of exile that is graver than having one’s speech, fates, and sense of self essentially outsourced to another person, in Berger, who can be little more than a familial proxy at best. But this ‘outsourcing’ is not simply the will of a state or a judicial power or precedent; instead, it is a nearly inescapable casting-out of one’s own residence and command of their very bodies, fates, and histories. Indeed, the very fact that Berger essentially must attempt to map the minds of his own sisters as “unknown territory” suggests just how exilic their experience really is.

          In short, if we continue to fail to reach for truths about ourselves, disability’s crisis of subjectivity will only grow. And I believe it is a crisis that cannot simply be politicized, mobilized or politicked away in Ottawa or elsewhere.  This paper is an initial attempt to vocalize an apparent identity crisis in disability that comes to fruition in real and profoundly digital ways. Moreover, this is not a hope that we politicize ourselves yet further, but that we instead find different ways to anchor our disabled identities and present them to the world. Indeed, it is very much time to cease these metaphorical Pinocchio stories, for myself, for others, and for those around us.

Alexander Jackson
Western University
NOTES

1. See Rosi Braidotti’s The Posthuman.
2. Referring to both main definitions of ‘constitutional’ here: as referring to biological or mental health, and as referring to established set of principles governing a state.

WORKS CITED

Berger, James. After the End: Representations of the Post-Apocalypse. Minneapolis: University of Minnesota Press, 1999. Print.

Braidotti, Rosi. The Posthuman. Cambridge: Polity, 2013. Print.

Bowker, Natilene, and Keith Tuffin. “Disability Discourses for Online Identities.” Disability and Society. 2002. Print.

—. “Disability Discourses for Online Identities.” Disability & Society, vol. 17, no. 3, 2002., pp. 327-344. Web.

Brune, Jeffrey A., and Daniel J. Wilson, eds. Disability and Passing: Blurring the Lines of Identity. Philadelphia: Temple University Press, 2013. Print.

Davis, Lennard J., editor. The Disability Studies Reader. 4th ed. New York: Routledge, 2013. Print.

Deleuze, Gilles, and Felix Guattari. A Thousand Plateaus: Capitalism and Schizophrenia. trans. Brain Massumi. Minneapolis: University of Minnesota Press, 1987. Print.

Lorenzini, Carlo. The Adventures of Pinocchio. “Chapter 17” The Project Gutenberg. Trans.

Carol Della Chiesa. Produced by Charles Keller.  February 4th, 2013. . Web.

Reinders, Hans S. The Future of the Disabled in Liberal Society: An Ethical Analysis. Notre Dame: University of Notre Dame Press, 2000. Print.

Saxton, Marcha. “Disability Rights and Selective Abortion.” The Disability Studies Reader, ed. Lennard J. Davis. 4th ed. New York: Routledge, 2013. 87-99. Print.

Nguyen, Mimi Thy “The Refugee Condition,” The Gift of Freedom: War, Debt, and Other Refugees Passages. Durham: Duke University Press. 2012. Print.

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