Union Institute & University
Spring-Summer semester, 2012
Beginning with Erving Goffman’s ground-breaking 1963 book Stigma: Notes on the Management of Spoiled Identity — a masterful examination of the nature of stigma as a social construct — scholars and activists over the past five decades have extended our understanding of how stigma operates and the purposes that it serves. While acknowledging the seminal nature of Goffman’s work, more recent thinkers have demonstrated that his analysis is of limited use for analyzing disability stigma, because it addresses how stigma works in social interaction, but not why people engage in stigmatizing behavior. Fortunately, more recent work has provided a number of tools for analyzing the emotional, cognitive, and political uses of stigma. These tools are essential for understanding how visual and textual media work to maintain the cultural stigma against people with disabilities.
This paper explores my contention that, from an emotional and cognitive perspective, mainstream representations perpetuate disability stigma by making disabled people the symbols of our culture’s deepest fears about any potential loss of moral, sexual, or physical control. I posit that the projection of these fears onto disabled bodies results in a number of dehumanizing extremes, and that once these contradictions are in place, disability representations become a means of political and social control, reinforcing the strictures of “normalcy” to which disabled people can never conform. By examining research on the impact of stigma in general, I argue that people with disabilities experience a host of problems in the face of stigmatizing representations, including loss of self-esteem, poor health outcomes, social isolation, and victimization through physical violence.
I will begin my exploration of these issues by briefly examining a number of theories about stigma, and by reviewing the ways in which recent scholarship has moved beyond analyzing the mechanics of the stigmatization process in favor of understanding why human beings engage in stigmatizing behavior at all. Next, I will look at the ways in which mainstream representations use contradictory extremes to construct and reinforce disability stigma; once I have done so, I will go on to analyze the strategies that these representations use to perpetuate the drive toward “normalcy” and to maintain social control. I will conclude the paper by acknowledging the impact of stigma on disabled people and the need to resist stigma by speaking in our own voices about the disability experience.
Theorizing Stigma: Moving from the How to the Why
At first glance, Goffman’s analysis of stigma holds much promise for understanding disability stigma. He defines stigma in a way that resonates as much for disabled people as for any other minority: he calls stigma an attribute that is “deeply discrediting” and that renders the stigmatized person “not quite human” (Goffman 1963, 3). Moreover, Goffman is quite specific in his assertion that stigma and the inferiority it assumes do not inhere in the discredited attribute itself, but that social groups attach meaning to forms of human difference in ways that result in discrimination and unequal access to the rights and privileges of a society (Goffman 1963, 5). However, as Susan Wendell points out, Goffman seems to unconsciously adhere to an essentialist idea of stigma when it comes to disability, and does not question the meanings assigned to disabled bodies; rather, he perpetuates those meanings (Wendell 1996, 58). For example, Goffman describes disabilities as “abominations of the body” and “physical deformities” — deeply negative and stigmatizing judgments of physical difference (Goffman 1963, 4, cited in Wendell 1996, 58). Thus, Goffman falls into the trap of assuming that the support networks formed by disabled people are by nature inferior to the social interactions that take place in the larger society, calling social groups of disabled people a “half-world” in which they can “lament” their fates (Goffman 1963, 20-21, cited in Wendell 1996, 59).
Of equal significance is the fact that Goffman is far more interested in examining how the stigmatization process works in social interaction than in examining its origins and uses. He therefore does not examine the root causes of stigma or the larger political and social purposes it serves (Gleeson 1998, 21). As such, his work is of limited value when addressing how to combat disability stigma. However, later theorists have addressed the causes and uses of stigma in ways that can help to answer the question of how to begin to dismantle it. For example, Lerita M. Coleman Brown explains stigmatization with reference to three mutually reinforcing processes, each of which an exercise of personal and political will can interrupt: 1) an emotional process, in which fear becomes attached to difference (Brown 2010, 182-183); 2) a cognitive process, in which the mind’s ability to socially categorize other people devolves into degrading stereotypes that blot out individual characteristics and devalue members of one group as inferior to those of another (Brown 2010, 183-185); and 3) a process of social control, in which nonstigmatized people use stigma to rationalize exploitation and exclusion, and to maintain majority-minority power relationships (Brown 2010, 185-187). Bernice Pescosolido and her colleagues have developed a similar framework for understanding stigma, exploring the ways in which emotional, cognitive, and structural processes create it and negative media representations reinforce it (Pescosolido et al. 2008, 431-440). Moving beyond emotional and cognitive explanations, Richard Parker and Peter Aggleton weave together the work of Goffman and Foucault into an analysis of why stigma is necessary to the legitimization of injustice and unequal power imbalances (Parker and Aggleton 2003, 18).
From an emotional and cognitive perspective, disability stigma is an expression of all that the nondisabled majority rejects. Wendell argues that disabled bodies become sites of projection for the fears of the able-bodied majority, with the result that disabled people are placed into the category of “the Other.” When we make someone “the Other,” Wendell notes, we see the person as an object on which to project meaning, rather than as a subject constituted by personal, social, and political experiences. Once the person has become an object, we make the person symbolic of what we seek to reject in ourselves (Wendell 1996, 60). As Wendell goes on to show, what people in our society fear the most is loss of control, particularly regarding bodily function (Wendell 1996, 63). Because disabled people cannot control their bodies in order to comply with cultural norms, the disabled body becomes “the rejected body” onto which able-bodied people project their fears about their own physical vulnerabilities — and their own failures to meet increasingly narrow ideals of body shape and health (Wendell 1996, 85). Thus, disability becomes synonymous with “imperfection, failure to control the body, and everyone’s vulnerability to weakness, pain, and death” (Wendell 1996, 60).
Contradictory Extremes: Disability Stigma in Mainstream Representations
The projection of human vulnerability onto disabled bodies results in representations of disability as synonymous with victimhood, helplessness, incompetence in all tasks, and constant need. Nearly 30 years ago, Irving Zola explored such messages about disability in print media, television, and film, noting that prime-time television dramas, particularly medical dramas, depict disabled people as impotent and dependent, without intimate relationships and without work (Zola 1985, 8). In 1988, Michelle Fine and Adrienne Asch analyzed the social-psychological literature and found that researchers similarly represent physical impairment as a source of victimization by locating all of the difficulties associated with disability in the body, rather than in the social exclusion, architectural barriers, discrimination, and stigma that disabled people meet in the world around them (Asch and Fine 1988, 8-11). Moreover, as Fine and Asch assert, the literature represents disabled people as ceaseless burdens — the perpetually helpless recipients of the assistance of others (Fine and Asch 1988, 12-13). Underlying this characterization are a number of baseless assumptions: that because disabled people need help in one area, they need it in all areas; that a need for support will disrupt reciprocity in friendships and intimate relationships; and that disabled people always receive caregiving, but never provide it (Fine and Asch 1988, 13). As Rosemarie Garland-Thomson asserts in a similar vein, “the disabled are portrayed as helpless, dependent, weak, vulnerable, and incapable bodies” (Garland-Thomson 2002, 8).
It is my contention that stigmatizing disabled people as entirely passive — helpless, incompetent, and dependent — makes disabled bodies a blank canvas on which a number of paradoxes are inscribed. Moreover, I see all of these paradoxes as projections of the cultural imperative that we maintain control of our bodies at all costs, and of the underlying terror of losing control. I agree with Wendell that the imperative toward control derives from a cultural denial that our bodies fall apart and that we die, but I would extend Wendell’s analysis by positing that the fear of losing control extends into all areas of our existence, especially regarding our moral and sexual lives.
Thus, stigmatized and rejected as victims who embody the worst fears of able-bodied people about the frailties of the body and the inevitability of death, disabled people also find themselves caught in a number of contradictory categories that express the unresolved fears that able-bodied people carry about their moral and sexual lives. In making use of these categories, the mainstream world represents disabled people as morally deviant and threatening, but also spiritually innocent and pure; hypersexual and sexually deviant, but also asexual and childlike; and vulnerable and helpless, but also heroic fighters who can overcome all odds. One side of each paradox reflects an extreme loss of control; the other side counters it with the image of an uncommonly high level of control. Because disabled people are subjected to the stigma of being characterized according to contradictory extremes, their social status as full human beings is severely compromised, particularly in a culture that sees moderation in all things — “the middle way” — as a significant value (Davis 2010, 5).
The myth that disabled people are both morally deviant and spiritually pure has a long history. As Colin Barnes points out, during the Middle Ages, both laypeople and clergymen associated disability with evil, believing that disabled children were “changelings” left by the Devil in place of “human” children (Barnes 2010, 21). Across cultures and historical time periods, disability has been considered an indicator of villainy, with disabled children called a punishment for their parents’ transgressions and acquired disability interpreted as a sign of having committed a moral wrong (Haller 2002, 169-170). Such representations continue well into our era, as reflected by Marilyn Dahl’s conclusion that children’s literature and popular media make abundant use of disability and ugliness as signifiers of evil intent and criminal behavior (Dahl 1993, 1). As Simo Vehmas asserts, the question of whether disabled people can be moral derives from a belief in Western culture that only rational people can be ethical; therefore, people who appear to have any form of cognitive, intellectual, or emotional disability are considered “amoral” (Vehmas 2004, 34). Given the cultural assumption that disability in one area implies incompetence in all areas (Wendell 1996, 63), the question of moral deviance potentially extends to all people with disabilities. And yet, as a counterpoint, depictions of disabled people also make disability a metaphor for innocence. As Dahl notes, classic children’s literature has been known to represent disability in ways that render the characters spiritually pure, as in depictions of the “blind seer” or the “selfless dwarf” (Dahl 1993, 1).
Not surprisingly, these paradoxical characterizations of disabled people as both morally deviant and spiritually pure also find their expression in sexual terms: disabled people are considered hypersexual and perverse, on the one hand, and asexual and childlike, on the other. Mark Sherry notes that disabled people are considered freaks in a number of ways, particularly regarding the extremes of hypersexuality and asexuality: “Disabled people have been ‘queered’ through various cultural processes of enfreakment, particularly those that produce (often contradictory) notions of asexuality, vulnerability, inexhaustible sexual voraciousness, perversion, and exoticism” (Sherry 2004, 781). Tom Shakespeare notes that dwarves, in particular, carry the stigma of hypersexuality, but goes on to suggest that any form of sexuality among disabled people is, to quote one of his respondents, “monstrous and perverted” (Shakespeare 2005, 61). This characterization of sex for disabled people derives, as Tobin Siebers points out, from the conflation of having a “healthy sex life” with being able-bodied; any attempt to engage in sexual activity in a non-normative way is considered deviant (Siebers 2011, 141-142). Not surprisingly, then, disabled people who need facilitators in order to engage in sexual activity are considered to be engaging in immoral acts (Sherry 2004, 781).
In counterpoint to the myth of sexual deviance, the culture generates a pervasive assumption that disabled people have no sexual desire and cannot engage in sexual activity at all. Many nondisabled people see disabled people as asexual (Baxter 2008, 563), and such popular films as The Men, The Waterdance, and Forrest Gump make this assumption a staple of entertainment, especially when representing physically disabled men (Shakespeare 2005, 60). Nancy Mairs, a woman with multiple sclerosis, puts the characterization of asexuality most succinctly when she writes:
When it comes to sexuality in the disabled, dismissal is apt to turn into outright repression. Made uncomfortable, even to the point of excruciation, by the thought of maimed bodies (or for that matter, minds) engaged in erotic fantasy or action, many deny the very possibility by ascribing to them the innocence of the very young. (Mairs 2002, 162)
In other words, because many nondisabled people see sex among disabled people as deviant, they react by casting disabled people as purely asexual.
The characterization of disabled people as alternately threatening and pure finds a more subtle — but no less troubling — expression in the contradictory characterization of disabled people being either “bitter crips” absorbed in their own suffering, or “super crips” who heroically defy the odds (Hardin et al. 2001, 1). Much of the psychological literature characterizes disabled people as bitter crips, alleging that their suffering turns them into narcissists who blame others for their own pain (Siebers 2011, 34), who are unable to love (Siebers 2011, 40), and who have marginalized themselves “for perverse and selfish reasons” (Siebers 2011, 42-43). Clearly, the bitter crip characterization carries with it suggestions of moral deviance and social threat. Moreover, as Siebers points out, the charge of narcissism constitutes an insidious means by which disabled people are blamed for their own marginalization and disempowered from fighting for their civil and human rights; any attempt at speaking in their own voices becomes morally questionable. Thus, according to Siebers, “the isolation, suffering, and claims to attention of people with disabilities are turned against them and…their reactions to their own disability become the proof of defects even greater than physical ones” (Siebers 2011, 35).
As part of the stricture against becoming a bitter crip, the culture demands that disabled people become super crips, heroes who “overcome” their disabilities — as though disability itself were a state of complete, passive nonfunctioning. Such heroes appear in the popular media on a regular basis. Goggin and Newell observe that many news stories about the Australian Paralympics describe the participants as “exceptional people with disabilities surmounting the impossible” (Goggin and Newell 2000, 79). The implication is clear: disability is a sign of utter helplessness that only a hero can overcome. Moreover, disabled people must rise to the level of heroism in order to be considered of worth. As Thomas Hehir points out, paraphrasing Cyndi Jones in Joseph Shapiro’s 1994 book No Pity: People with Disabilities Forging a New Civil Rights Movement, our culture’s default response is to treat disabled people with pity, and respect only comes when disabled people accomplish extraordinary things (Hehir 2002, 3).
If we look at stigma as a result of cognitive and emotional processes, we can see that the cultural imperative of maintaining control, and the terror of powerlessness that underlies it, result in the contradictory extremes by which mainstream society represents disabled people. However, what of Brown’s contention that there is an aspect of social control to stigma (Brown 2010, 189)? What of the conclusion reached by Parker and Aggleton, that stigma is a necessary part of maintaining structures of power and domination (Parker and Aggleton 2003, 18)?
Social Control: Perpetuating the Myth of Normalcy
For clues as to how the stigma of disability is deployed for the purposes of social control and power, one must understand the tyrannical role that the ideal of normalcy plays within our culture. As Lennard Davis notes, the concept of “normal,” which many people take for granted as a synonym for “natural,” did not exist in American or European culture until the mid-nineteenth century (Davis 2010, 3-4). The idea of the norm arose from the field of statistics, beginning with the French statistician Adolphe Quetelet, who calculated a statistical average of human qualities that became the image of l’homme moyen — a non-existent average man who was simply a statistical construct (Davis 2010, 5-6). Later in the nineteenth century, in keeping with the aim of the eugenics movement to create human beings in whom all deviation from the norm would be erased, Sir Francis Galton converted the bell curve into quartiles, ranking each section of the curve from lowest to highest. Those ranked highest were valued as key to the progress of society; those ranked lowest were targeted for elimination by means of eugenics (Davis 2010, 9).
Once the ideal of normalcy was in place, disabled people became associated with members of all other groups with “abnormal” traits, such as criminals and the poor, and ranked on a scale in which they were believed to impede human progress and the moral and physical health of the nation (Davis 2010, 10). From there, the highest imperative for citizenship — and humanity — was to be “normal,” and the rights and privileges of a society became apportioned on that basis. Of course, the “norm” is always defined by deviations from it, so the privileges that come with “normalcy” depend on defining subjects who do not fit the ideal (Smith 2004, 13). With regard to disability, the larger culture accomplishes this purpose by projecting onto disabled people all of the ways in which able-bodied people fear being out of control — morally, physically, and sexually. The fear of being non-normative, then, creates a stigma from which most people, if they can, will attempt to escape (Davis 2002, 105).
Cultural representations reinforce the strictures of normalcy — and, in the process, reify the stigma attached to being non-normative — in a number of ways. One method is to communicate the explicit message that being normal is both an unquestionable right and unquestionably right. Rebecca Dosch Brown analyzes one such example in her piece about a television segment called “Siblings with Autism” that aired on WPIX in New York in April of 2011. The host interviewed the typically developing siblings of autistic children, framing their experience as an injustice in having been robbed of a “normal” sibling and “normal” family experiences (Dosch Brown 2011, 10). For example, in speaking of a non-autistic boy named Andrew and his autistic older brother, Davey, the narrator of the program suggests that Andrew has been denied the right to normalcy: “All six-year-old Andrew wants is a typical afternoon, playing in his backyard, but his twelve-year-old brother, Davey, is anything but typical” (Dosch Brown 2011, 10).
In this rendering, the program picks up on the trope of the disabled person as morally abject and threatening. The autistic sibling, by his very nature, is the purveyor of suffering for the entire family. The implication of culpability becomes clear in the assertion of one therapist who says of nondisabled siblings, “They’ve lost their brother and sister, they don’t have the brother and sister they thought they’d have. They’re the ones that bear the brunt of so much. They bear the pain, the agony, the sorrow, the anger, the despair, and the isolation” (Dosch Brown 2011, 11). The disabled child has somehow replaced the “normal” sibling that everyone needs and deserves and, as such, is stigmatized as the cause of lifelong pain.
In other representations, the imperative toward normalcy is not quite so explicit. Such representations engender fear and loathing toward all that is non-normative by projecting it onto disabled bodies. In The Enfreakment of Photography, David Hevey discusses this objectification of disabled people by analyzing the treatment of disability in high-quality photography. In The Family of Man, he notes, a disabled person appears as a symbol of tragedy and courage set against a backdrop of a normative world of progress and wholeness (Hevey 2010, 509). Moreover, in diane arbus, the figures of dwarves, a giant, and people with intellectual disabilities symbolize the photographer’s sense of the fragmentation and disorder of the society at large and within herself (Hevey 2010, 509-515). Finally, in Gary Winogrand’s Figments from the Real World, disabled people represent instability, disharmony, and horror (Hevey 2010, 514-516). As Hevey asserts, disabled people in each of these works represent meaning in the photographer’s narrative, but do not create meaning themselves, nor do they represent their own concerns. They are symbols, and each representation casts disabled people as strange, disturbing, and segregated from “normal” people (Hevey 2010, 518-520).
Other forms of representation support the concept of normalcy by inviting nondisabled people to stare at disabled bodies and then casting those bodies according to the contradictory assumptions embedded in our culture. In “The Politics of Staring,” Rosemarie Garland-Thomson uses a four-part taxonomy to describe the ways in which popular photography represents disabled people: the wondrous, the sentimental, the exotic, and the realistic. The first three categories reflect the contradictory representations I have outlined; the fourth attempts to remove the need for contradictory extremes by hiding disability altogether. The wondrous elicits admiration or astonishment by framing a disabled person’s activity as extraordinary (Garland-Thomson 2002, 59-61); this approach tends to reify the idea of disabled people as heroic super crips. As a counterpoint, the sentimental seeks to engender pity for what is assumed to be the suffering of disabled people (Garland-Thomson 2002, 63); this framing tends to reinforce the notion of disabled people as both asexual and helpless (with the implication that one must help disabled people in order to keep them from becoming bitter crips). The exotic sensationalizes disabled people as disturbing and alien (Garland-Thomson 2002, 69), and tends to cast them as hypersexual and threatening, while the realistic goes to the other extreme, hiding visible indicators of disability in order to portray disabled people as “normal” and just like everyone else (Garland-Thomson 2002, 69). The fact that removing contradiction with regard to disability can only be accomplished by erasing disability from view is an indicator of how deeply these extreme versions of disability are woven into the cultural fabric.
A prime example of the kind of representation that make paradoxical use of the wondrous to elicit gawking admiration at disabled people doing ordinary things, and the exotic to elicit moral and sexual revulsion at who they are, is the 1932 movie Freaks. The film features a cast of people with various disabilities, and has a number of scenes in which physically disabled people carry out ordinary tasks using their uncommon bodies; for example, in one scene, Prince Randian, a man without limbs, lights a cigarette. However, the film was also considered scandalous when it was released (Haller 2002, 167-168), because central to the film is a sexual relationship between a Hans (a man of short stature) and Venus (a tall, conventionally beautiful able-bodied woman) — a relationship that the filmmakers invited people to see as deviant and perverse (Haller 2002, 169). In the latter part of the film, when it becomes clear that Venus has married Hans only for his money and has attempted to poison him, all of the other “freaks” ultimately band together to take revenge by killing Venus’ able-bodied lover and mutilating Venus, turning her into a “freak” herself (Haller 2002, 170). The linking of disability with both sexual and moral deviance could not be any clearer.
Interestingly enough, other visual representations maintain the strictures of normalcy by using fear of disability in an entirely different fashion. Rather than posing disabled people as being morally or sexually deviant, these representations cast them as having a special sort of spiritual power. One egregious example of this form of representation is the Muscular Dystrophy Association Telethon, which was hosted by Jerry Lewis every Labor Day weekend from 1966 through 2010. As Beth Haller points out, Lewis’ approach was to portray disabled people as suffering children by referring to even disabled adults as his “kids” (Haller 2010, 142). Then, he evoked fear in the audience that such suffering could happen to their children (Haller 2010, 144), and represented the entire process of fundraising as a spiritual undertaking with disabled people of non-normative spiritual abilities (Haller 2010, 142). His use of pity was based on the fear of disability, and he used both visual and verbal means to accomplish the task of pleading for his “kids” to be returned to “normalcy.”
Lewis’ use of visual staging was masterful. As Haller notes, in every telecast, when interviewing disabled people, he is standing, a paternalistic authority figure who hugs them and pats them on the head as though he were a loving parent (Haller 2010, 142-143). Once Lewis establishes even adults as children, he uses both visual and verbal means to represent them as being of higher spiritual standing than able-bodied people. He always controls the microphone so that others have to look up to him in an attitude reminiscent of religious awe (Haller 2010, 143), and he refers to people with muscular dystrophy as bringing him luck and giving him something to hold onto as he goes through his daily life (Haller 2010, 143-144). Of course, the point is not to respect disabled people as they are, but to create distance from them as non-normative and to elicit contributions in order to bring them into the fold of normalcy.
Apart from the telethon, perhaps the most destructive way in which popular media uses disabled bodies to reinforce the strictures of normalcy is by speaking of disabled people as unproductive burdens who threaten the moral and economic fabric of the nation. In so doing, the media reinforces the idea that to be “normal” is to be an able-bodied worker. Over the past decade, the scapegoating of disabled people as economic burdens has escalated in the popular media, as evidenced by the 2010 report Bad News for Disabled People: How the Newspapers Are Reporting Disability, published by the Strathclyde Centre for Disability Research and the Glasgow Media Unit at the University of Glasgow. In this report, the contributors analyze reporting on disability in five newspapers in the UK for the period 2010-2011, and find that, in representing disabled people as morally corrupt burdens on society, newspaper stories use three different approaches: disabled people are spoken of as a drain on the economy and, in some cases, as responsible for Britain’s economic problems (Briant et al. 2010, 9); fraudulent disability claims as represented as far more common than they actually are (Briant et al. 2010, 10); and the claimants are attacked as promiscuous, lazy, and irresponsible (Briant et al. 2010, 11). Certainly, the credo of nineteenth-century eugenicists who believed, in Davis’ words, that if “individual citizens are not fit… then the national body will not be fit” resonates to the present day (Davis 2010, 10).
Wide-Ranging Effects: The Impact of Stigmatizing Representations on Disabled People
The impact on disabled people of being stigmatized in so many ways cannot be underestimated. Its internalized effects include loss of pride and self-esteem (Murphy 1990, 90), often descending into self-hatred (Campbell 2008, 155; Link et al. 2001, 2; Link and Phelan 2006, 528) and a threatened sense of one’s social identity (Major and O’Brien, 2005, 397-399). The social isolation that stigmatized people experience exacerbates these threats to one’s sense of self, and puts disabled people at risk of suicide (Murphy 1990, 64). Moreover, stigmatized people live with a great deal of stress and fear about the consequences of their stigmatized status (Link and Phelan 2006, 528), and without the ready access to the rights and privileges that nonstigmatized people take for granted; as Major and O’Brien point out, stigma is associated with “low social status, poverty, and reduced access to housing, education, and jobs” (Major and O’Brien 2005, 394). As a result of anxiety, stress, and socio-economic marginalization, stigmatized people tend to suffer from a host of health problems (Link and Phelan 2006, 528-529), including “depression, hypertension, coronary heart disease, and stroke” (Major and O’Brien 2005, 409).
But the danger of stigma is not simply to one’s sense of self and physical health. There is a far more dangerous threat: active violence. Stigmatized as having lives of lesser worth, disabled people endure, first of all, the psychic violence of those who believe they would be better off dead. Chief among those is Peter Singer, the Ira W. DeCamp Professor of Bioethics at Princeton, who believes that parents should have the option of having severely disabled infants euthanized, and who has said that it should be legal “to kill, at any age, individuals with cognitive impairments so severe that he doesn’t consider them ‘persons’” (Johnson 2010, 573). Of course, the violence goes beyond the psychological trauma of knowing that one’s life is so devalued that even a bioethics professor believes it should have been terminated long ago; it becomes physical on a widespread scale. As Mark Sherry points out, disabled people suffer a wide variety of violent hate crimes: simple and aggravated assault, intimidation, vandalism, theft, rape, and arson (Sherry 2003, 6). The violence can be lethal. Sometimes, death occurs as a result of outright abuse and murder (Light 2003, 10, 13-14; Quarmby 2008, 7). Sometimes, it occurs though a denial of care for conditions that would ordinarily be treated in nondisabled people (Light 2003, 11-12, 17). Bill Peace, a wheelchair user of 30 years, writes about a doctor offering him assisted suicide by giving him the choice of refusing antibiotics for a life-threatening infection — the doctor’s assumption being that death was preferable to disability (Peace 2012, 1).
Like all forms of stigma, disability stigma works to keep its targets in a position of powerlessness and exclusion. Cultural representations reinforce and perpetuate stigma, casting disabled people as helpless, tragic, suffering victims who reside only at the extremes of human behavior and experience. Because people with disabilities, like all people, are far more complex than such black-and-white renderings suggest, any attempt to change cultural representations must address the oversimplifications that abound. How do we create that kind of change? As disabled people, we must continue, whenever we are able, to talk about the realities of our lives. This degree of openness is difficult, given the sheer weight and shaming nature of stigma, but in the final analysis, our self-esteem, our health, and our lives may depend upon it.
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© 2012 by Rachel Cohen-Rottenberg