The Fantasy of Disability

Images of Loss in Popular Culture

Jeffrey Preston

• Publisher: Routledge
• Year: 2016
• Print ISBN: 9781138494497
• eBook ISBN: 9781317032014
• Edition: 1
• Topic: Social Sciences
• Subtopic: Social Work
• Index: Social Sciences

What are the unconscious fantasies circulating in representations of disability? What role do these fantasies play in defining the condition of disability? What can these fantasies teach us about human vulnerability writ large?

The Fantasy of Disability explores how popular culture texts, such as Degrassi: The Next Generation and Glee, fantasize about what life with a physical disability must be like, while at the same time exerting tremendous pressure on disabled individuals to conform their identity and behaviour to fit within the margins of these societally perpetuated archetypes. Rather than merely engaging with how disability is represented, though, this text investigates how representations of disability reveal their nondisabled producers to be perpetually anxious subjects, doomed to fear not just the disabled subject but the very reality of disability lurking within.

Situated at the nexus of disability studies, media studies and psychology, this text presents an innovative way of analyzing representations of disability in popular culture, inverting the psychoanalytic gaze back upon the nondisabled to investigate how disability can become a lens through which to interrogate the normate subject.

1 Introduction

Representations of physical disability in the mass media were always confusing for me as a child. I was always excited to see people like me on television or in film, but quickly found that their plot lines and motivations were completely foreign to my experience. In the media I found unfamiliar stories obsessed with diagnosis and the fight for normalcy. One common story of disability present in the media was that of individuals struck down by horrible misfortune who then face the choice between either struggling against their physical or intellectual limitations to become heroes. The other common story of disability in the media was those who succumb to the challenge of disability and are marked as villainous. These other characters were often anxious about bodily difference, where physical and intellectual limitation is presented as a stain upon the individual that becomes the principle attribute upon which the rest of a person’s identity is built. While I certainly faced barriers growing up with a disability, these limitations were largely systemic and attitudinal rather than battling my condition. Similarly, as I grew older and began befriending others with disabilities, it became apparent that the heroic and tragic figures of disability in the media were not representative of the community either, leaving me to question: if it is not the lived experience of disability that informs representations of physical disability in the mainstream media, what animates these depictions?

Rather than speaking to the lived experience of disability, the ways we talk about disability in the media are reminiscent of confrontations with the nondisabled, dubbed here “normates,” with interactions framed by an attempt to understand how someone so profoundly limited can survive in our ableist world. In the eyes of the normate, my disability is a tragedy of unspeakable proportions, leaving them to stumble over the words they choose to describe my “cart” or assure me of God’s eternal love despite my affliction. These interactions are structured around an unspoken belief that something terrible has happened, that the world dealt me a terrible blow and these gentle strangers are simply making up for this tragedy.

Diagnosed with a rare neuromuscular disorder at birth, this pity and paternalism does not make sense to me because, in my mind, I have endured no moment of violence, injustice, or loss. Being in a wheelchair is all I have ever known and, therefore, I have never felt wronged or misfortunate. I never looked at my physical limitation as something to struggle against, to beat back for fear it will swallow me whole, but simply as a piece of my life – one that, while significant, is certainly not the core of my identity nor my principle motivation. Yes, I have Muscular Dystrophy but it is not all that I am. Growing up I was cognizant of my asymmetry, but saw no shame in navigating the world differently. Ultimately, I could think of no reason my mode of transportation should affect my personhood. Perhaps this is because I realized early in life all the ways in which everyone around me is inherently limited, whether it is intellectually or physically.¹ Growing up with a disability, I was always encouraged to focus on the things I could do, becoming more focused on what I accomplish with help than what I could not do at all. This is probably why I did not spend much time dreaming of or wishing to walk, which seems superfluous when the wheelchair augments my mobility.

An example of this dissident confrontation, which played a large role in the genesis of this project, came several years ago. This example came while in line at a shopping mall, when I had a particularly significant encounter with the normate subject. While waiting to reach the cashier, a young girl standing in front of me became entranced by my wheelchair and started sneaking peaks at me over her shoulder. At first, the older woman who was with her, presumably her mother, acted casually, trying to get her daughter’s attention with gentle pinches to her shoulder and hushed reprimands emitted under her breath. As the girl became more and more curious, turning her head fully to apprehend me, the mother began placing her hand on top of the girl’s head and physically turning it to face forward. This dance would proceed several times, with the girl becoming emboldened, finally turning fully around to gaze. At this point the mother turned bright red, grabbing her daughter’s arm and scolding her, explaining it is not polite to stare. The message was received this time and the girl stopped trying to look, eventually leaving the store moments later.

At the time, I found the whole charade funny, if not inconsequential, but as distance grew, my retrospective interrogation of the experience proved illuminating. For the mother, this was a moment of manners – it is not polite to stare at the disabled and such behavior may upset them. This was not a moment of maliciousness but one of sympathy, in which she was trying to protect my feelings. At the same time this moment bestows a powerful lesson to the young girl on what disability is and how to manage this encounter. While perhaps not her first brush with disability, this encounter was decidedly negative, as the young girl’s interest in the wheelchair got her in trouble. In this moment, disability is converted from a curiosity into a taboo, that which must not be interrogated without risking the love and affection of the parent, a rule that will no doubt be enforced later in life by the super ego and eventually imparted to her own children. Describing a similar scene of youthful curiosity in disability, Watermeyer explains:

In the stranger before her she sees tragedy, loss, shame, the unknown; each aspect an affront to modernist aspirations. A moment such as this allows little choice; we unconsciously deflect what is raised in us, often seeing the stranger as a personification of our own un-thought wounds.

(Watermeyer 2014, 66)

In Lacanian terms, this becomes a moment of castration, with the desire of the child (to apprehend the Other) barred by the parent figure. Disability, however alluring, cannot be interrogated, must not be grasped, which demands a requisite distance to prevent accidental co-mingling. This moment also distinctly marks disability as something shameful, teaching the child that the normate must not look because the disabled do not want to be seen. To confront disability then is to encounter shame, both for the one who looks and the one looked at (see Garland-Thomson 2009).

From physical to political exclusion, disability means living a life on the margins. While inaccessibility is often pointed to as a primary problem and cause of exclusion for the disabled citizen, there are deeper questions involving emotional relations of vulnerability, health, and sexuality that form an integral part of individuals’ identity. Like gender, “disability” is a discursive category sometimes assigned at birth and which exerts a powerful effect on an individual’s identity and internal perceptions of self. One of the prevailing, widely shared fantasies is that disabled subjects are docile, dependent, and vulnerable individuals who must be cared for until cured. This dependence and innocence is perhaps most famously portrayed in the award-winning film Rain Man (1988), in which a selfish man is forced to care for his disabled brother in order to access his recently deceased father’s wealth but, in the process, he learns a valuable lesson about empathy and compassion. While those with disabilities can and do act outside these fantasies generated by the “able” majority, there is still a strict code of rules and regulations, enforced by authority figures, that are fiercely inscribed upon the disabled with the same tenacity of the organic disease lurking within some of our DNA: Muscular Dystrophy requires me to use a wheelchair, but it is those around me who cast me as a “disabled” subject. It is this way in which disability is constructed as a subjectivity – a forced identity position that follows a specific path, influenced heavily by inaccessibility, skewed perceptions, and vexed relationships with the medical industry, various levels of the government, peers, and even our parents.

In order to better understand this condition, it is important to understand how and from where these fantasies about disability emerge. The western construction of disability is fraught with factual inaccuracies, but disability is generally seen as a manifestation of weakness and limitation, as well as a reliance on others. As such, the disabled are a people constantly confronted with reproach, pity, and paternalism. As an individual with a disability, my life is full of people explaining how brave or strong I am to be away from the homestead (or hospital) and how tough it must be living with a disability. How could such fantasies of disability be so widely held while having so little basis in reality?

Simi Linton explains in My Body Politic (2006) that to be impaired is to have a limitation. For example, individuals who require reading glasses have an obvious impairment, although they are not typically classified as “disabled.” Disability, rather, is a perception of a subject’s body and being that is imposed, in part, through medical diagnosis, and in part, by cultural codes and practices (Linton 2006, 3). In a similar gesture to the medical assigning of biological sex – which then becomes conflated with gender – doctors determine an individual to be disabled when a physical or mental deficiency is identified, a deficiency marked by the reliance on adaptation or accommodation. What is particularly important about this moment is that the individual is ultimately being described and represented as incomplete, indeed, as lacking the necessary qualities or attributes to be deemed “normal.” This medically determined deviance from the “abled” body is then further culturally inscribed with connotations of weakness and reliance on others. At the same time, physical inaccessibility bars many impaired subjects from full participation in social life, rendering us outsiders looking in on a world where we are not accepted.

Let me take a moment to explain the language that will be deployed throughout this project. Definitions have played an important part in the evolution of disability studies because language used to encapsulate the population is at the core of the segregation of the disabled. Most scholars and activists working in the field of disability studies rely upon the binary of “disabled” and “nondisabled” to explore the separation between those who live with disability and therefore understand it, and the nondisabled, who do not. I find this separation problematic because there are many individuals in our community who would self identify as being nondisabled (i.e. not having a medically diagnosed impairment), but still have an insider perspective on life with a disability. A prime example of this is my mother, who does not have a medically diagnosed disability herself but fully understands the realities of disability as experienced through raising her disabled son. For the purposes of this study, it is important to distinguish between those who experience disability, whether they have a diagnosis or not, and those who are actively or passively ignorant to the world of disability. It is for this reason I am going to move away from the disabled/nondisabled binary for this project and suggest the usage of a term Rosemarie Garland-Thomson (1997) has coined to mark those who do not consider themselves disabled and have limited or no experience with disability itself, a position she names the “normate.”

For Garland-Thomson, the term normate provides language with which to discuss people who put themselves outside the realm of disablement, striving for what would otherwise be known as “normal.” Garland-Thomson playfully explores what is considered to be bodily normality in American society, ascribing normalcy to “young, married, white, urban, northern, heterosexual, Protestant father of college education, fully employed, of good complexion, weight and height, and a recent record in sports” (Garland-Thomson 1997, 8). Normalcy, as defined by Erving Goffman (1986), is structured along lines of optimum bodily configurations with preference to physical ability and appearance along a rigid heteronormative formation within which there is no room for bodily abnormality. But more than just defining people by looks, we must acknowledge the power relation between subjects. As Garland-Thomson goes on to explain in Extraordinary Bodies:

The term normate usefully designates the social figure through which people can represent themselves as definitive human beings. Normate, then, is the constructed identity of those who, by way of the bodily configurations and cultural capital they assume, can step into a position of authority and wield the power it grants them.

(Garland-Thomson 1997, 8)

Here Garland-Thomson rightly explores the ways in which normates not only separate themselves from disability but also assume a position of authority over the disabled subject. With this linguistic shift, Garland-Thompson hopes to get away from the “simple dichotomies” of able-bodied versus disabled bodies and “examine the subtle interrelations among social identities that are anchored to physical differences” (1997, 8). Psychologist Brian Watermeyer explains that the normate self is then “informed by four interlocking ideological principles: self-government, self-determination, autonomy and progress” (Watermeyer 2014, 117). In the same way, this project seeks to examine the fantasies of the normate as they encounter disability. It is for this reason that I have chosen to use the term “normate” as opposed to the more common “nondisabled.”

In defining the “normate” it is then important to consider the definition of “disability” and its various cultural incarnations. The cultural connotations of disability are often referred to in the literature as the social construction of disability (Davis 1995, Oliver 1990, Wendell 1996, Charlton 1998, Shakespeare 2006). These ideas are rooted in and circulate from four primary sites: religion, medicine, legislation, and the mass media. The foundational core of these negative connotations is rooted in religious discourse. As Julia Kristeva (2010) explains, disability has often been represented as a manifestation of sin, and in particular, as a punishment against sinful people in morality tales. Deborah Creamer confirms this origin in her text Disability and Christian Theology, stating:

In Deuteronomy 32:39 the Lord says, “I kill and I make alive; I wound and I heal,” showing that while disease and injury may be a consequence of sin, they are clearly also within the realm of God’s control. Disease, as a manifestation of God’s wrath against sin, can be seen on both an individual level and a national level.

(Creamer 2010, 42)

Here disability is represented as an affliction, a burden to bear for past transgressions, and a mark of difference directly tied to transgression of God’s law. Disability is a curse cast upon the unholy and a reminder of the evils lurking in the shadows. Creamer examines the Hebrew Bible, specifically Leviticus, in which the disabled are viewed as “unclean” and must be segregated from the mainstream population. This belief of contamination blocked people with disabilities from entering the priesthood: “One had to be without defect in order to approach God’s place of residence” (43).

Later, Judeo-Christian religions would modify this belief to prescribe an inherent link between helping the “unfortunate” and spiritual salvation, as with the story of Jesus and the lepers, a shift that occurs in the Gospels which “show numerous examples of Jesus touching the diseased and the outcast. He is described as talking to blind Bartimaeus, healing the woman with the flow of blood, and touching the leper who asks him for healing” (Creamer 2010, 44). The belief here is that by caring for the diseased and disabled one will be closer to God and these conditions could be seen as a gift to the normate rather than a curse. The question and value of charity is perhaps most famously seen in Matthew 25, as Kristeva explains:

From the start of these works of charity, the Byzantine martyr Zotikos shocked the ancient world by caring for “crippled” lepers: he no longer left the infirm to divinity by “exposing” them, but welcoming them as a gift from God with the power to “sanctify” us. St. Augustine integrates the anomaly into the normal, and with him the infirm become lovable, helpful.

(2010, 35)

The cultural capital of Jesus the Healer extends deep within western society, with similar honors bestowed upon good Samaritans, like Mother Teresa, or humanitarian activists like Princess Diana. The duality of disability as curse or gift, punishment or potential, is one of the most pervasive and influential models for the construction of disability.

The medical world would later modernize this circuit of ideas by moving from the language of sin to the language of “medical ethics.” At the core of medical practice is the Hippocratic Oath, which mandates health professionals to always work in the best interest of their patients. The problem is that to the medical establishment, “best interest” drives research to find a cure, which, in turn, implies the disabled are subjects in disrepair. In the world of outcome-driven medicine, there is little difference between a spinal cord injury and the common cold – both are problems that require treatment. The work of finding a cure is largely financed through the selling of a cure, particularly through mass sponsorship calls, like the annual Jerry Lewis Telethon, which, Beth Haller (2010) shows in her book Representing Disability in an Ableist World, relies heavily on presenting heartbreaking stories of children limited by their medical diagnosis to generate the funds to bankroll medical research. It is in this drive to find a cure that impairment, and ultimately disability, is marked by the largely pitying perceptions that many hold today. In the doctors’ obsession to normalize through “cure,” they inadvertently validate society’s fantasy that life with a disability is a condition that should be overcome. This message is made all the more powerful by the authority doctors are given in our society, where their years of rigorous schooling are seen to indicate an advanced understanding of life and the ways of the world.

The drive for cure and the power bestowed upon doctors goes deeper than pure altruism; ultimately, this is about capital. With reference to Eisenhower’s (1961) warnings of the military-industrial complex, some disability scholars have begun to research a similar medical-industrial complex, work which focuses on the ever expansion of profit within the medical industry in the same ways that the military continues to invade all markets of the economy (Barnes, Mercer, and Shakespeare 1999, 57). In the world of disability, the doctors at the head of the medical establishment act as the arbiters of disablement, deciding who is and isn’t disabled (Prince 2009, 75–76). This is an important distinction: those with acquired impairments who cannot join the labor-force are seen as burdening the system while those with genetic impairments are regarded as “bad luck” cases. This lack of fault then distinguishes the disabled from the shame of “welfare” to people who are receiving “disability support” (Barnes, Mercer, and Shakespeare 2010, 40).

The medical doctor is not just used for the diagnosis of disability, but perhaps more importantly, for the overcoming of limitation. The research industry, spawning an entire charity sector whose sole purpose is to financially support the researchers’ work, dominates the medical industry, devoted not just to finding cures for disabilities, but also into practices and procedures to return as much functionality to people as possible. Ultimately, the goal of a doctor is to return patients to “health,” which is to say, to allow them to get back to work. Crucially, the value of “normalcy” is exclusively tied to the importance of the subject’s ability to labor. For this reason, much of the legislation around disability is primarily focused on enabling m...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• 1. Introduction
• 2. Considering the literature
• 3. Corporeal casualties: Vietnam War film and the fantasy of disability
• 4. Fantasizing disablement in Degrassi: The Next Generation
• 5. Dream on: Fantasies of (dis)ability in Glee
• 6. Conclusion
• Works cited
• Index