Its So Hard On The Rest Of Us
Apr 3rd, 2013 by Rachel Cohen-Rottenberg

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Neurotypical Awareness: Understanding is Essential
Apr 2nd, 2013 by Rachel Cohen-Rottenberg

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Did You Know
Apr 2nd, 2013 by Rachel Cohen-Rottenberg

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Shining a Light for Neurotypical Awareness
Apr 1st, 2013 by Rachel Cohen-Rottenberg

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Neurotypical Awareness: For the Children
Apr 1st, 2013 by Rachel Cohen-Rottenberg

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Caught Inside a Paradox: How Cultural Representations Perpetuate Disability Stigma
Jul 18th, 2012 by Rachel Cohen-Rottenberg

Rachel Cohen-Rottenberg
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


On Communication and Double Standards: David Smukler’s Critique of the Theory of Mind Theory of Autism
Jun 27th, 2012 by Rachel Cohen-Rottenberg

Rachel Cohen-Rottenberg
Union Institute & University
Fall-Winter semester, 2011-2012

The Theory of Mind (ToM) theory of autism posits that autistic people lack a core brain module that would enable them to understand the perspectives of other people and empathize with their thoughts, feelings, and intentions. In “Unauthorized Minds: How ‘Theory of Mind’ Theory Misrepresents Autism,” David Smukler carries out a thorough-going critique of the ToM theory, discussing its history, shining a light on the largely unquestioned assumptions on which the theory is based, exposing the limitations of the research, and making clear the dehumanizing impact of the deficit-driven nature of the theory on autistic people. I found the paper not simply a persuasive piece of work, but a brilliant tour-de-force regarding all of the problems inherent in the construction and continued acceptance of the ToM theory. Smukler breaks down the core assumptions of the theory in great detail, adducing evidence from a number of studies, ranging from early ToM tests on primates to Simon Baron-Cohen’s more recent Empathizing-Systemizing (E-S) theory of autism. He presents his own core assumptions explicitly and uses them consistently in his critique.

Smukler’s concerns about the ToM theory originate not from a scientific interest in autism research, but from his experience as the father of an autistic so. Throughout his son’s life, Smukler has found that his own observations and experiences have contradicted the conclusions of researchers, particularly with reference to empathy and ToM (Smukler 2005, 12). In order to make sense of this disconnect, Smukler does not approach the problem from the perspective of science, because he does not hold to the idea that science can ever be objective. Instead, he proceeds from the perspective of social constructionism, arguing that all truth is created in social contexts and that the questions that researchers ask, the decisions they make regarding what evidence is most compelling, and the conclusions they draw all derive from socially constructed value systems (Smukler 2005, 16)

Thus, Smukler argues that all research is inevitably informed by value-laden assumptions, and he outlines what he considers the eight core assumptions that drive autism research (Smukler 2005, 14). One such assumption is the belief that all of the features of autism derive from a single, core disability, rather than from a constellation of neurological differences. For adherents of the ToM theory, impaired ToM is that single, core disability. According to Smukler, because ToM adherents have assumed impairment rather than neurological difference, and because they have chosen to look for a single cause of a complex condition, they concentrate on the ToM theory to the exclusion of all other explanations for autistic perception (Smukler 2005, 14-15). I’ve long felt that, were the researchers to loosen their grasp on the ToM theory, they might be able to see an autistic person’s difficulty understanding the perspectives of non-autistic people in a completely different light. They might understand that it could derive from an experience of the sensory and emotional world so different from the norm that for an autistic person to discern what a typical person might feel in the same situation becomes very difficult. And they might also see that they themselves have parallel ToM difficulties when it comes to understanding the experiences of autistic people. Smukler’s discussion of the ways that researchers embrace the unitary theory of autism helped me understand why they still grasp so firmly to the ToM theory.

Not surprisingly, Smukler makes extended use of the social model of disability. This model asserts that one can only be disabled in relation to an accepted norm, that such norms are never neutral, and that disability is therefore a social construct (Smukler 2005, 12). The social model often stands in opposition to the medical model, which views disability as an inherent deficiency that must be cured. Smukler’s adherence to the social model becomes clear when he argues that autistic people should not be assigned sole responsibility for breakdowns in communication across neurological lines, as often happens when people blame such breakdowns on what they refer to as autistic communication impairments. Because communication always entails the efforts of at least two parties, Smukler reasons, arriving at an understanding of the other is always the responsibility of everyone concerned. He writes: “Both communication and social interaction, by definition, require more than one person, and difficulties in either area should properly be located between individuals and not within one individual.” (Smukler 2005, 17) He thereby implies that a communication difference becomes an impairment only when others expect normative communication and do not make the effort to bridge the gap. By this logic, one could also argue that autistic people should not be the only ones assigned ToM difficulties. To do so is to set up an arbitrary norm that everyone should be expected to understand “normal” minds, but that no one should be expected to understand atypical minds.

Like Smukler, I am a strong proponent of the social model of disability, and I found his critique very compelling. I have long felt frustrated by the methods and conclusions of the researchers regarding ToM and empathy in autistic people, and when I read Smukler’s paper, I felt as though I’d found an ally. In particular, I appreciated his discussion of the ways in which scientists cherry-pick the data to support their assumptions. For example, Smukler does an excellent job exposing the double standard by which researchers interpret the results of false-belief tests. When autistic children fail the tests, researchers cite this failure as proof of a lack of ToM in autism, but when non-autistic children fail the tests, researchers assert the need to find better methods for measuring ToM. Referring to Bloom and German’s 2000 paper, “Two reasons to abandon the false belief task as a test of theory of mind,” Smukler writes that the authors fell prey to this double standard when they “argued compellingly that failing false belief tasks does not demonstrate that a child lacks a theory of mind, but they did not question the assumption that it is the lack of a theory of mind that makes children with autism differ from most other children, despite their vigorous critique of the false belief tasks that were the basis for such an assertion.” (Smukler 2005, 20, emphasis mine)

Further, I was drawn in by the ways in which Smukler calls autism researchers to task for window-dressing their findings to make them appear more scientific. He does a trenchant analysis of the narrative devices used to present the findings, decrying the fact that the results “are presented quantitatively in a narrative style and format appropriated from the natural sciences” and in a way very likely to increase the “legitimacy” and “prestige” of the researchers (Smukler 2005, 15). As a writer, I laud the ways in which Smukler analyzes the style of the research papers, especially when he contrasts the reasonable tone taken by the authors with the dehumanizing impact of their words: “The notion that autism results from or includes a theory of mind deficit goes far beyond impugning the intellect to assert the lack of such characteristics as empathy and emotional depth—traits that are said to ‘make us human.’” (Smukler 2005, 19)

Despite my appreciation of Smukler’s work, however, I feel troubled by his insistence that autism is simply a difference. I agree that we should move away from the medical model of deficiency, but the word “difference” tends to hide the difficulties that many autistic people experience because of the nature of the condition itself. Not all difficulties can be explained by reference to the social model. As a parent called “bbsmum” said in response to my piece “Neurodiversity, Grief, and the Normal Minority” on my Journeys with Autism blog, no amount of social change can make the world any less aversive for her severely autistic son, whose sensory sensitivities are extreme: “All the acceptance in the world can’t change the fact that BB must live in a world where dogs run, babies cry, flies buzz and all the other triggers that make his life so hard.” I don’t think that Smukler’s social constructionist approach would have lost any credibility if he had given a nod to these kinds of difficulties. After all, difficulty is not the same as deficiency. In fact, one could easily argue that extreme sensitivity is indicative of an overabundance of perception rather than a deficit

This criticism aside, I consider Smukler’s paper a “must-read” for anyone who wants to know more about why the research into autism and empathy is so deeply flawed. It is an excellent treatment of all the ways in which the ToM theory does not measure up to the standards of hard science and provides an excellent example of how to bring the social model of disability to bear on the critique of autism research.


Bloom, Paul and Tim P. German. “Two reasons to abandon the false belief task as a test of theory of mind.” Cognition 77, no. 1(October 16, 2000): B25–B31. doi:10.1016/S0010-0277(00)00096-2.

Journeys with Autism. “Neurodiversity, Grief, and the Normal Minority.” Accessed November 30, 2011.

Smukler, David. “Unauthorized Minds: How ‘Theory of Mind’ Theory Misrepresents Autism.” Mental Retardation 43, no. 1 (February 2005): 11-24. doi: 10.1352/0047-6765(2005)43<11:UMHTOM>2.0.CO;2.

© 2012 by Rachel Cohen-Rottenberg

Deconstructing Autism as an Empathy Disorder: A Literature Review
Jun 25th, 2012 by Rachel Cohen-Rottenberg

Rachel Cohen-Rottenberg
Union Institute & University
Fall-Winter semester, 2011-2012

When engaging the question of whether autistic people experience empathy, one finds a very wide gap between the conclusions of the most widely accepted research studies and the lived experiences of people with autism. On the one hand, the research with the widest currency for the past 25 years, both in academic circles and in popular culture, has resulted in the conclusion that autistic people lack empathy; on the other hand, the words of autistic people, and the observations of those who live and work closely with them, often reflect an overwhelming level of empathic response. What accounts for this disjunction? A preliminary review of the literature shows that both methodological issues and limiting biases are in play. From a methodological standpoint, the quantitative studies that underlie the theory of autism as an empathy disorder are rife with the problems common to all quantitative research: they generalize about millions of people based on small sample sizes; they refer to people in the aggregate as the statistical mean of their attributes, rather than as individuals; they use pre-determined tests and questionnaires that do not take into account the perspectives of the research subjects; and they generalize about complex human experiences in simple terms. While a number of studies have pointed to factors other than a failure of empathic response that account for poor autistic performance on conventional test instruments, and while new research demonstrates direct evidence of the intensity of autistic perceptual, cognitive, and emotional awareness, the characterization of autistic people as lacking in empathy still holds tremendous sway in both the research community and the popular mind. As such, the nature of the current science calls out for a detailed critique of its methodologies ― one that moves the conversation past the pretense of objectivity into an analysis of the biases, core assumptions, and power relations embedded in the research. The construction of a new paradigm for analysis, informed by such critical social theory as Normal Theory and feminist epistemology, has the potential for framing a rigorous critique of the social, cultural, and ability-based assumptions on which mainstream autism research is based.

The theory that autistic people are defined by a lack of empathy has its origins in a 1985 study by Simon Baron-Cohen and his colleagues at the Autism Research Centre at Cambridge University. When these researchers began their work, they described empathy in terms of being able to mentalize — to discern that other people have thoughts and feelings different from one’s own — an ability known as having a theory of mind. They then set out to answer the question of whether autistic people have this capacity (Baron-Cohen et al. 1985). To do so, they verbally administered a false-belief test to 20 autistic children. As is the goal of all false-belief tests, this one sought to answer the question of whether the respondents could differentiate between their own knowledge about a situation and the false belief of someone else. The researchers used two dolls, Sally and Anne, to act out a scenario in which Sally put a marble in her basket and left the room, and then Anne took the marble out of Sally’s basket and put it in a box. Baron-Cohen’s team asked the children where Sally would look for the marble when she returned. Sixteen of the twenty autistic children answered that Sally would look in the box (where they themselves knew the marble to be), rather than in the basket, where Sally believed the marble to be. Based on the performance of these children, the researchers drew the conclusion that autistic people cannot understand the mental states of others, cannot figuratively put themselves into the shoes of others, and therefore lack the ability to empathize.

While the 1985 study has greatly influenced the conversation about autism, it suffers from the same flaws as the studies that followed: it uses small sample sizes, and it hides variations in ability by describing autistic people in the aggregate. Because the original study was based on a small sample of only 20 autistic children — four of whom passed the test — the conclusion that autism is defined by an impairment in theory of mind is highly questionable; later studies in support of this thesis relied on similarly small groups of test subjects and failed to show universal deficits. A 1989 follow-up study with only ten autistic children showed 10% of them passing amore advanced false-belief test, while a later study of only 16 autistic adults showed them scoring, on average, lower than controls (Baron-Cohen 1989; Baron-Cohen et al. 1997). From these studies, researchers took the leap to characterizing all autistic people as lacking a theory of mind; in fact, they developed the Theory of Mind hypothesis of autism as a unitary theory that explained the source of all autistic traits. When the author of this literature review questioned Baron-Cohen’s generalizations based on these studies and others like them, he provided a graph showing that he was not speaking about individuals, but about autistic people being, on average, to the left of the bell curve (Autism Blogs Directory 2011). His response begs the question of how autism can be defined as an empathy disorder when the aggregated data fails to show universal deficits and ignores individual variation (Gernsbacher 2005).

The quantitative approach used by Baron-Cohen and his colleagues not only generalizes from small samples and masks variation by means of statistical averaging, but also reduces complex human experience into simple categories; the result is that Baron-Cohen’s theories have become more and more essentializing and reductive. For example, beginning in 2002, Baron-Cohen began modifying his work to include a conceptualization of autism as a disorder marked by an excessively “masculine” cognitive style. In using the term “masculine,” he was not referring to a complex cultural and historical construct, but to what he believed simply to be a biologically inherent attribute. Such views were first expressed in his paper on the Extreme-Male-Brain Theory, in which he described systemizing as a biologically based male trait and empathizing as a biologically based female trait, further asserting that because autistic people are good systemizers, they have an “extreme male brain.” (Baron-Cohen 2002) These views find their most expansive rendering in his Empathizing-Systemizing (E-S) Theory, in which he drastically reduces the complex interplay of systemizing and empathizing into polar opposites on a simple, flat linear continuum, with autistic people at the zero end of the empathy scale (Baron-Cohen, 2009, 2011). In support of these rather problematic theories, one finds Baron-Cohen and his team crafting a number of quantitative tests, including the Systemizing Quotient (SQ) test (Baron-Cohen et al. 2003) and the Empathy Quotient (EQ) test (Baron-Cohen and Wheelwright 2004); carrying out studies that purport to show a direct correlation between testosterone and autistic traits, including a presumed lack of empathy (Chapman et al. 2006; Knickmeyer et al. 2006; Bara et al. 2010; Chura et al. 2010; Auyeung et al. 2010, 2011; Van Honk et al. 2011); and performing brain imaging studies that test empathy, mainly by privileging visual processing (Baron-Cohen 2011). The results of every test are interpreted as reflective of a lack of empathy in autistic people, with no suggestion that because the studies are based on straightforward biological determinism and ignore the complex internal experiences of the research participants, the conclusions might be flawed.

In privileging biology over the nature of his subjects’ lived experiences, Baron-Cohen ignores other explanations as to why autistic respondents might score poorly on his tests. In so doing, he breaks a key rule in scientific inquiry: It is not enough to determine whether a theory can be proven true. One must demonstrate that it cannot be proven false (Creswell 2009). Other researchers, however, have been more thorough in seeking evidence for other reasons why autistic people might score below controls on quantitative tests of empathic ability, with most of their studies centering on tests of false belief. These studies have pointed to a number of challenges associated with autism, including real-time information-processing difficulties that show up in the more advanced false-belief tests (Tager-Flusberg and Sullivan 1994) and the ways in which the extreme fear engendered in autistic children outside their familiar environments adversely affects attention and communication, as reflected in the words of an autistic respondent who answered the question “Do you think you would mind if somebody entered the room?’’ by replying, ‘‘Yes, we always live in fear.’’ (Bara et al. 2001) In and of themselves, these elements of autism would explain an inability to follow the scenarios being presented in Baron-Cohen’s tests and thus, an inability to provide the expected answers.

While information-processing difficulties and high levels of anxiety provide sufficient reason to question the conclusions about theory of mind drawn from false-belief tests, additional evidence abounds for why autistic people score lower than controls on these tests. Some of the most compelling evidence comes from researchers who point out that impairments in both receptive and expressive language are core to autism, and that these impairments make understanding verbal instructions and providing verbal answers on false-belief tests extremely difficult (Gernsbacher and Frymiare 2005). To test the notion that giving a verbal assessment to a child with language impairments unfairly skews the results, one researcher gave autistic and deaf children a visual, nonverbal test of false belief, and found that not only did both sets of children show intact theory of mind, but they also outscored non-autistic and hearing children taking the same test (Peterson 2002). Other researchers have shown that autistic children’s scores on theory of mind tests improve as their expressive and receptive language skills improve (Steele et al. 2003). In fact, much of the problem attending false-belief tests may derive from the grammatical construction used in them, the sentential complement; according to Gernsbacher, this construction “is one of the most complex in the English language” (Gernsbacher 2005). When it comes to performance on false-belief tests, the importance of understanding a sentential complement cannot be overstated. In a sentence that uses this construction, the main clause is true, but the subordinate clause might be true or false. An example is the sentence “John thinks that Sarah is in the library”; while it is true that John thinks that Sarah is in the library, whether Sarah is actually in the library is another matter. Thus, the sentential complement provides a way for one to think about the difference between another person’s belief and what is actually happening ― exactly the capacity being tested on false-belief tests (Hale and Tager-Flusberg 2001). Having a grasp of sentential complements gives one the tools with which to think about the contents of other people’s minds ― tools not available to children with language impairments.

The mounting evidence against the characterization of autism as an empathy disorder does not stop at critiques of false-belief tests, but also consists of studies that demonstrate, in contradistinction to Baron-Cohen’s theories, that autism is a condition defined by an overabundance of perceptual, cognitive, and emotional awareness. For example, a 2005 study showed that, for autistic respondents, the amygdala ― the portion of the brain responsible for processing emotions ― was overactive when they gazed at faces, an indication of a higher than average emotional response (Dalton et al. 2005); a 2006 study described autistic experience as one of “enhanced perceptual functioning” (Mottron et al. 2006); and in a 2007 study, the authors coined the phrase “Intense World Syndrome” to describe autistic perception, and concludedthat rather than having a deficit in awareness and response, autistic people find the world so laden with sensory and emotional information that they withdraw from social interaction (Markram et al. 2007). The same year, another study found that while the autistic respondents scored lower than their non-autistic counterparts on tests of cognitive empathy (the ability to determine mental states from nonverbal cues), they scored equal to or higher than their non-autistic peers on measures of emotional empathy (having an affective response to the feelings of others). In 2009, independent theoretician Adam Smith followed up on this research by developing his “Empathy Imbalance Hypothesis of Autism,” positing that autism is characterized by low cognitive empathy but very high emotional empathy (Smith 2009), and in 2010, autism researcher Bird and his team found that empathy does not inversely correlate with autistic traits, but is associated with high levels of alexithymia, an inability to verbalize emotion (Bird et al. 2010). All of these studies shine a light on the complex nature of autistic empathic and sensory experience.

And yet, for all of its potential to change hearts and minds, the new research has not managed to dislodge the influence of the work that continues to make autism synonymous with a lack of empathy. The Theory of Mind and Empathizing-Systemizing theories of autism still cast a long shadow, as evidenced by the dehumanizing tropes employed by researchers in the literature and by professionals in the popular press. Because empathy has become synonymous with humanity both in the research and in the popular mind, a purported autistic empathy deficit has become the basis for dehumanization. In the literature, one finds statements that autistic people are not fully human (Baron-Cohen 2001); that autistic children are like robots and chimpanzees (Pinker 2002, 62, cited in Gernsbacher 2007); that autistic people are inherently selfish and egocentric (Frith 2004); that autistic children are like apes (Tomasello et al. 2005, cited in Gernsbacher 2007); and that autistic people dehumanize others and can provide insight into why non-autistic people do the same (Haslam 2006). Moreover, in the press, autism professionals have made statements for popular consumption along similar lines: that autistic children are missing a core component of humanity (Siegel, cited in Falcon 2002); that people with autistic traits should not bear children (Siegel, cited in Buchen 2011); and that trying to teach a person with autism empathy is like trying to teach a pig to sing (Sanders 2011). With the sole exception of Gernsbacher, this rampant dehumanization generates nary a whisper of protest in the research community (Gernsbacher 2007). Moreover, the theory of autism as an empathy disorder informs proposals for highly questionable treatments, such as the use of MDMA (Ecstasy) to induce empathy in autistic people (Bedi 2011; Yazar-Klosinski 2011). Given the levels of dehumanization that have found currency in the research community and in the larger culture, and the dangerous treatments to which they can lead, the theories on which such distortions rest merit rigorous critique.

To carry out such a critique, one must begin by a) analyzing for possible bias all the methodologies on which the theories are based, and b) engaging in reflection upon the limitations of quantitative measures. One might start by critiquing such self-report questionnaires as the Social Reciprocity Scale (Constantino et al. 2000), the Autism Quotient (Baron-Cohen et al. 2001), the Systemizing Quotient (Baron-Cohen and Wheelwright 2003), the Friendship Questionnaire (Baron-Cohen and Wheelwright 2003), the Empathy Quotient (Baron-Cohen et al. 2004), and the Adult Asperger Assessment (Baron-Cohen et al. 2005). One might then move on to an analysis of all theory of mind tests, including Pretend, Desire, Perception/Knowledge, Location-Change False-Belief, Unexpected Contents False-Belief, Sticker Hiding, Second-Order False Belief, Lies and Jokes, Traits, and Moral Judgment (Steele et al. 2003), along with such tests of cognitive empathy as the Reading the Mind in the Eyes Test (Baron-Cohen et al. 1997) and the Triangles Test (Abell et al. 2000; Knickmeyer et al. 2006). In addition, pressing work needs to be done on whether pre-determined questionnaires, hormone studies, and brain imaging tests should inform conclusions about the consciousness of human beings; after all, we are not the sum of our test responses, hormones, or brain waves. While quantitative measures might be able to answer the question of “What is happening?” they cannot answer the question of “Why is it happening?” ― particularly with regard to the infinite complexity of human emotional response in social and cultural contexts permeated by inequities based on gender, race, ethnicity, class, sexual orientation, and disability.

The process of combining a critique of the test instruments with a consciousness of the limitations of quantitative methods holds great potential for finding bias that can skew the test results. To provide a brief example: A preliminary review of the questions on the EQ test reveals some basic social assumptions. All of the hypothetical situations described in the questions assume a group of non-autistic people, and all of the questions expect that everyone should be able to impute mental states by looking at the nonverbal cues of non-autistic people. When it comes to measuring empathy, this assumption is significantly troubling for two reasons: 1) It fails to address the issue of what happens to autistic and otherwise disabled people in “normal” social settings, and 2) it assumes that autistic people should be able to read the mental states of non-autistic people, but makes no such assumption in the other direction. These two aspects of the test questions have the potential to bias the results in the direction of concluding that able-bodied people have empathy simply because they understand other able-bodied people, leaving out the possibility that they may do very poorly understanding the mental states and experiences of disabled people.

The first statement on the EQ provides an example of this bias in favor of the able-bodied majority. The statement reads: “I can easily tell if someone else wants to enter a conversation.” Who exactly is “someone”? Disabled people often find themselves wanting to enter a conversation in a social setting, only to have able-bodied people exclude them and render them socially invisible (Murphy 1990). And yet, many able-bodied people would very likely answer “Strongly agree” to this question because, in most instances, such people actually do notice other people sufficiently to read their signals. Thus, all the response indicates is that people in the majority are attentive to other people in the majority; the pre-determined question fails to address a complex and pervasive social bias against disabled people that is based on anything but empathy. Moreover, like so many of the questions on the EQ, this question assumes that a failure of an autistic person to properly deduce the mental state of a non-autistic person is evidence of a lack of empathy, but it does not make the opposite assumption: that a failure of a non-autistic person to properly deduce the mental state of an autistic person is also evidence of a lack of empathy. And yet, it is a truth hidden in plain sight that most non-autistic people are unable to intuitively read the nonverbal language of autistics and deduce their mental states. If they could, there would be no need for over 25 years of research into how autistic people work.

Fortunately, some preliminary work in critiquing research bias has been done by scholars who have pointed out the social, cultural, and ability-based assumptions embedded in the literature. Akhtar and Gernsbacher note a Western cultural emphasis on visual processing in social cognition and understanding mental states (Akhtar and Gernsbacher 2007). Smukler points to a privileging of normalcy in the ways in which the literature locates failures in social communication exclusively in the autistic person, rather than in a communication breakdown between parties, as would be assumed for relationships between non-autistic people (Smukler 2005). Along similar lines, Gernsbacher suggests that a lack of social and emotional reciprocity is not an inherent feature of autism, but derives from the autistic experience of exclusion and disrespect at the hands of non-autistic children and adults (Gernsbacher 2006). And finally, with regard to the Extreme-Male-Brain Theory, Jack notes a mapping of culturally constructed gender roles onto biology (Jack 2011). These perspectives on different forms of bias can provide the impetus for a thoroughgoing analysis of the research and an unmasking of its claims to objectivity.

Such a critique of autism research necessitates a new paradigm informed by critical social theory and its analyses of power, privilege, and marginalization. One of the more promising new frameworks comes from the nascent field of Normal Theory, based in part on the work of Lennard Davis, a scholar who traces the notion of “normal” as a social construct created by nineteenth-century eugenicists. According to Davis’ research, the early statisticians were almost all eugenicists, and were the first to aggregate human attributes, place them on a bell curve, define a norm to which all people must aspire, and mark anyone outside the center of the bell curve as inherently deviant and dangerous (Davis 2010, 4-11). Disabled people thus became, in Longmore’s words, “the ultimate Other” (Longmore 2003, 207). In his discussion of Normal Theory, Smith picks up from Davis in asserting that the category of disability creates the associated category of normal, and that normalcy cannot exist without it (Smith 2004). Moreover, Smith notes, the category of disability renders normalcy both neutral and invisible, hiding relationships of power between those who occupy the center and those who have been marginalized as abnormal. Disabled people, Smith asserts, become represented as homogeneous parts of an aggregate whole, without individuality and without complexity (Smith 2004), an act that Minnich traces to a Western cultural predisposition to categorize people according to “kinds” as though such categorization is “natural” rather than a human choice (Minnich 2005, 25). Normal Theory, drawing on other critical social theory such as Critical Race Theory and Whiteness Theory, has the potential to reveal when science has moved from increasing the store of useful knowledge to reinforcing stereotype and marginalization.

Given its analysis of the privileging of normalcy, Normal Theory is especially well suited to a critique of autism research. After all, autism research is marked by many of the problems that Normal Theory illuminates: a pervasive need to pathologize autistic responses as a deviation from the norm; an insistence on placing test results on a bell curve and speaking of autistic people in the aggregate; a tendency to essentialize cultural norms in the brains and bodies of autistic people; and a refusal to render images of autistic people as diverse and complex individuals. Moreover, Normal Theory has the potential to incorporate the insights of disability theorist Tobin Siebers, whose elucidation of the cultural accusation that all disabled people are narcissists, along with the near-invisibility of the social and cultural agenda of the accusers, has particular resonance for autistic people living under the burden of the lack-of-empathy stereotype (Siebers 2003, 34-52). If, as Garland-Thomson writes, “the margins define the center” (Garland-Thomson 2002), Normal Theory can offer an analysis of who benefits from autism research on empathy: autistic people who are marginalized as lacking in the essentials of humanity, or autism researchers who, by pathologizing difference, reinforce the privilege that derives from their own constructed normalcy?

In exploring this question, one must acknowledge that the problems of marginalization and privilege are nowhere more apparent than in the almost complete absence of autistic voices and perspectives from the research. Apart from the work of Smukler (2005), Mottron et al. (2006), and Smith (2009), who incorporate autistic perspectives into their work, the voices of the very people about whom so many generalizations are constructed are almost silent in the research. In fact, only Mottron and Gernsbacher have co-authored papers with autistic researchers (Mottron et al. 2006; Dawson et al. 2007; Stevenson et al. 2011); nowhere else are autistic researchers to be found. With the advent of the Internet, however, the voices of autistic experience now have a public platform, resulting in testimonies about autism and empathy that are profoundly enlightening ― a fact that makes the absence of autistic voices from the research all the more troubling. Consider, for example, the way that Nikki, a woman with Asperger’s Syndrome, describes the depth of her empathic experience:

There have been a few times that I have witnessed a person being hurt, or an animal killed or injured. As it was happening, I merged with and absorbed all the shock and pain. As a young child, I would try to save all the flies that had been caught on the sticky fly tape trap; I couldn’t stand to hear their desperate buzzing as they slowly died… I cannot stand to see anyone hurt or humiliated in any way. I am disgusted by “jokes” at someone else’s expense; I hate ridicule and barely concealed spite disguised as “humor.” Many times I have been told I am too intense, that I need to lighten up, and that I can’t take a “joke.” (Autism and Empathy, 2011)

The nature of Nikki’s empathic awareness stands in sharp contrast to the conclusions of the Theory of Mind hypothesis and the Empathizing-Systemizing Theory. Other such narratives abound, as can be found in a discussion of autistic adults moderated by Savarese (Savarese 2010), in blogs by autistic people listed in the Autism Blogs Directory, and in work by autistic people on the Autism and Empathy site. But like Nikki’s voice, the voices of autistics have not found their way into most of the research.

In conjunction with Normal Theory, feminist epistemology can begin to address this absence by opening up four related issues: “epistemic privilege,” the question of who retains the power, prestige, and authority that result from being designated a knower; “epistemic authority,” the right to be respected as a knower; “epistemic injustice,” the silencing and dismissal of the voices of knowers; and “epistemic ignorance,” a lack of valid knowledge that results from epistemic injustice (Anderson 2011). Along these lines, Anderson’s discussion of the ways in which conventional knowledge practices disempower women (Anderson 2011) has great potential for illuminating the ways in which mainstream research disempowers autistic people. In fact, one could easily use Anderson’s analysis of the position of women in the production of knowledge to highlight the position of autistic people in autism research. One need only substitute “autistic people” for “women” and each part of her analysis applies: rather than being given epistemic privilege, autistic people are almost entirely excluded from the process of scientific inquiry; autistic people are not accorded epistemic authority, despite having first-hand knowledge of the subject matter; the cognitive style of autistic people is pathologized rather than respected; the resulting theories represent autistic people as inferior; the research hides, behind a mask of objectivity, the inequitable power relations between autistic people and other actors in society; and the research is complicit in the production of knowledge that reinforces social hierarchies of normal and abnormal. The result is that autistic testimony is judged unreliable, resulting in epistemic injustice, as evidenced by a study that dismisses autistic people as having “a peculiar lack of insight” (Frith 2004) and one in which autistic self-representation is given less credibility than the observations of third parties (Johnson 2009). From such epistemic injustice comes epistemic ignorance (Anderson 2011); with authority denied to knowers who are in the position to know, a large part of the evidence base is simply missing.

To heal this epistemic ignorance, autistic voices must be given epistemic privilege in the research. The lived experiences of autistic people provide a key test as to the external validity of theories developed in vitro rather than in vivo. At present, however, most of the mainstream research on autism and empathy suffers from the limitations of all quantitative research when faced with the complexity of human experience. While new research points to a high degree of autistic perceptual, cognitive, and emotional awareness, the characterization of autism as an empathy disorder still permeates discussions about the nature of autism and the treatment of autistic people. By shining the light of an analysis informed by critical social theory, scholars have a powerful means by which to critique the social and power relations on which present autism research is based. As a highly empathic and sensitive woman on the autism spectrum, and as a member of a community that includes countless people who experience the sensory and emotional worlds with a great deal of intensity, I hope that others will join me in a rigorous critique of the research.


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© 2012 by Rachel Cohen-Rottenberg


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