By now, most people are aware of last night’s tweet by Ann Coulter, in which she commented upon the presidential debate in a manner consistent with her usual good taste and civility:

Oh, yes. Another disability slur. Another piece of mockery. Another way of saying how much you despise someone by comparing that someone to a disabled person. Oh, ha ha ha. So very clever. It just never seems to get old, does it?

Let’s start with the simple facts: Ms. Coulter used this slur against the President of the United States. She called the President of the United States a retard. You don’t have like Obama and you don’t have vote for Obama to know that you show some respect to the man by virtue of the elected office he holds. Maybe they didn’t teach this particular civics lesson at Cornell, where Ms. Coulter went to school, but they taught it at my elementary school in Brookline, Massachusetts, and most people who understand what it takes to hold together this fragile entity called a society understand that you have to show some respect to the office of the President and to the person who holds it. The man was, after all, elected by We The People.

But what’s worse — much, much worse — is that Ms. Coulter cast out a slur just as hateful as the N-word, or kike, or faggot. It’s hate speech. And it’s not just about some nameless, faceless people out there. It’s about intellectually disabled people, it’s about developmentally disabled people, and it’s about anyone with a disability who has been called a retard, or considered a retard, by people in desperate need of a clue.

So let’s put a face on who you’re calling a retard, shall we Ann? Because it wasn’t just the President. It was all the disabled people you decided to slur as well.

Right here is my friend Lydia — my beautiful, loving, kind friend Lydia. This is Lydia, who has autism, anxiety, periodic episodes of depression, and a laundry list of physical diagnoses.  She also happens to love her church, cats, and the color pink, and she writes books, poetry, and music.

That’s who you mean when you use the word retard, Ann. You’re not just talking about some abstraction out there. You’re talking about people with hearts and minds. You’re talking about human beings who love and are loved. You’re talking about me and mine.

© 2012 by Rachel Cohen-Rottenberg

Following is my second critical annotation of the semester.

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In her 1997 book, Seeing a Color-Blind Future: The Paradox of Race, Patricia Williams reflects upon the contradiction between our cultural insistence that color does not matter and the material reality of a world in which the construction of race has everything to do with one’s social, political, and economic experience. As I meditated on Williams’ words about the social construct and experience of race, I found myself noticing parallels to the social construct and experience of disability. While Williams does not include disability as a category of critical analysis, and while it would be appropriative to suggest that the experiences of race and disability are exactly the same, it is fair to say that similar issues come into play: the call to seeing the person, not the physical difference; the ways in which minority status is visible for critique, while the perspective of the majority becomes “natural” and fades into the background; the imperative to “pass”; the invitation to speak to one’s minority experience only for the benefit of those in the majority; the experience of being stared at but not seen clearly; and the necessity of battling against “scientific” representations that have little to do with lived experience. Unfortunately, while Williams protests the ways in which people can use one form of prejudice to argue against another, her analysis is marred by the fact that she uses pejorative disability metaphors in the service of her arguments against the insidious nature of racism.

An African-American professor of law at Columbia University and the author of the column “Diary of a Mad Law Professor” for The Nation, Williams is a prolific writer who has spent over 20 years tackling questions of social justice, race, ethnicity, class, and gender. She begins her book, however, with a personal story. She describes an incident at her son’s nursery school — an incident that derived from his white teachers’ well-intentioned imperative to be “color-blind,” but that ended up erasing the nature of her son’s racial experience. For most of his nursery school year, Williams tells us, his teachers believed that her son was color-blind. When asked what color the grass was, for example, he would respond that he either didn’t know or that it didn’t matter. After taking him to have his eyes examined and finding that he could see color perfectly well, Williams began to investigate why he was refusing to identify it (Williams 1997, 3). She learned that some of the children at his predominantly white school had been fighting about whether black people could be the “good guys” in playtime scenarios, and that the teachers had insisted that “it doesn’t matter…whether you’re black or white or red or green or blue” (Williams 1997, 3). She interpreted her son’s extreme refusal to identify color as an index of his anxiety that the teachers’ words would a) erase his own experience of color and b) deny his truth about the ways in which color matters in his relationships with others (Williams 1997, 4).

To put the imperative toward color-blindness another way: his teachers were telling the class to “see the person, not the color” in the same way that some in the disability community encourage able-bodied people to “see the person, not the disability” (Disability and Representation, 2012). In both cases, the imperative to see past the physical attribute, the insistence that the physical attribute does not matter, and the attempt to reach across difference by disregarding it derive from a desire to bring greater harmony to a world of injustice. The problem in both cases, of course, is that race and disability matter in that they are both social constructs that determine experience. Instead of taking a shortcut around the fact of race, Williams believes, we need to engage the experience of race in our culture in all of its manifestations (Williams 1997, 4-5). I would argue that exactly the same is true for disability. Until disability matters, not just as an indicator of personal experience, but also as a civil rights issue in which unjust social relations result in specific types of personal experience, there can be no significant progress toward the day when disability becomes a signifier of difference rather than a symbol of stigma and oppression.

One of the reasons, perhaps, that people rush to deny race and disability is that whiteness and normalcy are themselves invisible. Williams draws from whiteness theory when she writes that whiteness is an unmarked, de-racialized category; our culture does not tend to see whiteness as a race at all (Williams 2007, 6-7).  Phil Smith extrapolates from whiteness theory to posit normal theory; for him, normalcy is analogous to whiteness in that it is simply an uncritiqued given and is considered “natural” (Smith 2004, 13).  Perhaps, for those who are white and able-bodied, the desire to erase race and disability derives from a misplaced attempt to level the playing field. Perhaps people who insist that we “see the person, not the difference” are resting their view on the assumption that, because whiteness and normalcy are invisible, then race and disability should be invisible, too. Of course, the solution is not to make race and disability invisible, but to make whiteness and normalcy visible as categories of analysis. Until then, the invisibility of whiteness and normalcy will place people of color and disabled people in a realm apart. Williams writes that the invisibility of whiteness “permits whites to entertain the notion that race lives ‘over there’ on the other side of the tracks, in black bodies and inner-city neighborhoods, in a dark netherworld where whites are not involved” (Williams 1997, 7). As is the case with race, our cultural attitude toward disability is that it happens to someone else — someone who lives in a world apart, segregated from view (Murphy 1990, 110-111).

For both people of color and people with disabilities, this impetus toward invisibility takes the shape of pressure to “pass” so as not to intrude one’s difference upon the majority. Williams recounts the experience of her light-skinned cousin who could pass for white but identified herself in college as a member of the black law students’ association (Williams 1997, 53-54). When one of her professors found out that she had “outed” herself, Williams writes, he “grew agitated, annoyed, even confrontational”:

Why would she do such a thing, he wanted to know; why would she ‘label’ herself when she was so light-skinned and could so easily pass for white? My cousin was struck by how offended he was; he seemed to be implying that she had a obligation or a duty to pass and that her failure to do so was both impolitic and impolite. (Williams 1997, 54)

An analogous imperative to pass is the lot of disabled people who are able to hide their disabilities, as evidenced by Tobin Siebers’ remark that people with disabilities “must try to be as able-bodied as possible all the time” (Siebers 2011, 10). After reading Williams’ story about her cousin’s experience, I asked my circle of disabled friends whether anyone had had a similar experience about passing as nondisabled. A number of people had stories to tell. One autistic woman described her husband’s discomfort at her wearing bright yellow noise-blocking headphones and his worry that she was “disadvantaging” herself by choosing not to pass (Personal communication, 2012). Another autistic woman said that she had been accused of being impolite for not passing; after telling someone that her senses were overwhelmed and that she needed to find a quiet spot to recharge, the other person insisted that she continue passing, and chided her by saying “Lisa, you may have Aspergers, but you are intelligent enough to not act autistic” (Personal communication, 2012).

As a result of the cultural imperative to see race and disability as invisible, both are subject to what Williams calls “the forbidden gaze” (Williams 1997, 9). Children have a natural curiosity about difference (Brown 2010, 183) and, while our culture teaches them not to stare at non-normative people, it does not teach them how to engage difference (Williams 1997, 9). Because an interest in difference is both natural and culturally forbidden, people of color and disabled people find themselves in the paradoxical position of having to expose the nature of their experience for the use of others, right up until the point that their experience challenges the comfort of those doing the asking. People of color, Williams notes, “are ground down by the pendular stresses of having to explain what it feels like to be You … or, alternatively, placed in a kind of conversational quarantine of muteness” (Williams 1997, 9). Disabled people, too, find themselves in a similar quandary: they are either subject to questions from strangers about how they came to be disabled (Garland-Thomson 2000, 334) or they are ignored altogether (Murphy 1990, 118). In both cases, the center of gravity is the majority person. Minority people either perform for the majority person’s benefit, or they need to be quiet.

Interestingly enough, for both people of color and disabled people, the “forbidden gaze” turns into its opposite: intrusive staring. Williams refers to this propensity to stare as “racial voyeurism” (Williams 1997, 17). In one example among many, she describes the way in which tour buses in New York City bring tourists to black churches in order to “see the show” (Williams 1997, 22). Four hundred tourists arrive late, jockey for position for the best camera angles, photograph African Americans in prayer, and then disrupt the service by leaving en masse so as not to miss lunch (Williams 1997, 22-25). Williams considers the photographs a way of perpetuating the voyeuristic experience of watching “exotics”; she describes each picture as a “flat, dry, matted photographic relic to be spread out upon the coffee tables of faraway homes; the open-mouthed exotics, frozen in raucous song….” (Williams 1997, 25). Williams’ reflections on the voyeuristic nature of photography bring to mind Rosemarie Garland-Thomson’s statement that “photography authorizes staring” (Garland-Thomson 2002, 58) at disabled people, including those whom nondisabled people consider “wondrous” (Garland-Thomson 2002, 59-61) or “exotic” (Garland-Thomson 2002, 59). Through the eye of the camera, apparently, one can stare and circumvent the stricture against doing so.

And yet for all of this voyeurism, majority people often cannot clearly see the experience of race and disability at all. Williams recounts the discomfort of a colleague who was the only African-American attorney at a business luncheon where the waitstaff was entirely African-American. When the attorney mentioned to her white colleagues how uncomfortable she felt sitting among white professionals while being waited on by other people of color, her colleagues responded with profuse apologies for their choice of venue, all the while making it clear that they could not see the class barriers and social discomfort that were so painfully apparent to her (Williams 1997, 26-27). Siebers makes a similar observation about the experience of disabled people perceiving an architectural or social barrier that able-bodied people cannot see: “When we come to a barrier, we realize that our perception of the world does not conform to theirs, although they rarely have this realization. This difference in perception is a social barrier equal to or greater than any physical barrier…” (Siebers 2011, 51).  In both cases, people in the minority are vividly aware of a core feature of their experience that is utterly invisible to those in the majority.

For both people of color and disabled people, the experience of not being seen properly sometimes takes the form of distorted representations in the guise of science —  representations that rest on an ignorance of the daily lives and experiences of the people under study. Williams laments the way in which studies setting out to prove the genetic inferiority of black people periodically surface (Williams 1997, 51). Not only are the studies prejudicial, Williams notes, but they are also difficult to argue against; because they dress themselves up in the language of science and quantitative research, any rebuttal, in order to appear credible, must wear the same garb:

One of the great difficulties of pseudo-science is that it is so hard to refute just by saying it isn’t so… Black people find themselves responding endlessly to such studies before we can be heard on any other subject; we must credentialize ourselves as number-crunching social scientists quickly in order to be seen as even minimally intelligent… And it makes anyone who knows the great messy, unprovable contrary, who knows the indecipherable complexity of black or white people, who knows the reality and the potential of all humanity — us silly egalitarians — it makes us unintelligent, uninformed, powerless, and naïve. (Williams 1997, 49-50)

As Williams asserts, appeals to experience simply do not have a suitable degree of authority to counter anything that poses as science. Her analysis here reminds me of the charge of narcissism leveled at disabled people — the accusation that disability automatically renders one narcissistic  — which is supposedly supported by the “science” of psychological research (Siebers 2011, 38-40). The parallel between racist pseudo-science and the pathologization of disability is telling, as is the difficulty of arguing against the “science” by bringing to bear experience that is not quantifiable. How does one use charts and graphs to prove empathy, or interest in others, or socially imposed suffering? How does one use quantitative measures to prove more than a small fraction of intelligence, talent, or insight?

Despite the fact that people of color and people with disabilities experience similar systems of oppressive representation, Williams does not pose disability as a critical category in Seeing a Color-Blind Future. She focuses on the intersections of race, ethnicity, gender, and class, and she notes the ways in which one form of prejudice is sometimes brought to bear in order to fight another; she calls this phenomenon “battling biases” (Williams 1997, 32). As an example of this conflict, she cites her experience of watching a counter person accuse a homeless customer of misogyny as a cover for her own class prejudice against him (Williams 1997, 31-32), and she concludes that this “revolving door of revulsions” is one of the ways in which prejudice remains entrenched (Williams 1997, 32).

Ironically enough, though, Williams engages in “battling biases” herself, using pejorative disability metaphors in order to analyze ways to break through other forms of prejudice. For example, she writes that “the eradication of prejudice, the reconciling of tensions across racial, ethnic, cultural, and religious lines, depends upon eradicating the little blindnesses, not just the big” (Williams 1997, 61), using blindness as a metaphor for a systemic failure to perceive the issues with which minority people struggle. In the same paragraph, she uses paralysis as a pejorative, speaking of the “paralyzing anxiety of  well-meaning ‘white guilt’” as a metaphor for recalcitrance and lack of progress on race relations (Williams 1997, 61). In fact, she speaks of her son being pathologized as color-blind for his racial experience (Williams 1997, 5), but she doesn’t seem to realize that disabled people are equally pathologized for our disability experience, and that she is helping to perpetuate that pathologizing impulse.

An understanding of the commonalities between the experience of race and the experience of disability might have helped Williams bring disability into critical focus as a category of oppression and illuminate the ways in which both people of color and disabled people must struggle against similar obstacles. She might have helped make clear that disability, like race, is not simply a question of bodily difference, but an expression of a political and social experience. If Williams had brought disability into her analysis, she might have come to see that disability, like race, is an issue of civil rights and that, rather than deflecting our gaze from it, we must fully engage it.

References

Brown, Lerita M. Coleman. “Stigma: An Enigma Demystified.” In The Disability Studies Reader, edited by Lennard J. Davis, 179-192. New York, NY: Routledge, 2010.

Disability and Representation. “The Problem with Person-First Language: What’s Wrong with This Picture?” http://www.disabilityandrepresentation.com/2012/05/30/the-problem-with-person-first-language-whats-wrong-with-this-picture/. May 30, 2012. Accessed May 30, 2012.

Garland-Thomson, Rosemarie. “Staring Back: Self-Representations of Disabled Performance Artists.” American Quarterly 52, no. 2 (Jun., 2000): 334-338. http://www.jstor.org/pss/30041845.

Garland-Thomson, Rosemarie. “The Politics of Staring: Visual Rhetorics of Disability in Popular Photography.” In Disability Studies: Enabling the Humanities, edited by Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, 56-75. New York, NY: Modern Language Association of America, 2002.

Murphy, Robert Francis. The Body Silent. New York, NY: W.W. Norton & Company, Inc., 1990.

Siebers, Tobin. Disability Theory. Ann Arbor, MI: University of Michigan Press, 2011.

Smith, Phil. “Whiteness, Normal Theory, and Disability Studies.” Disability Studies Quarterly 24, no. 2 (2004): 1-24. http://dsq-sds.org/article/view/491/668.

Williams, Patricia. Seeing a Color-Blind Future: The Paradox of Race. New York, NY: Farrar, Strauss, and Giroux, 1997.

© 2012 by Rachel Cohen-Rottenberg

Following is my first critical annotation of the semester.

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In his 2011 book Disability Theory, Tobin Siebers raises a number of issues critical to disability studies. Siebers addresses the questions of how disability theory and other forms of critical theory can challenge and inform one another, how disability theory can move past the poststructuralist position that all experience is simply a linguistic construct and give voice to the embodied experience of disability, and how identity politics can move the disability rights movement forward in its struggle for universal access. Underpinning all of these issues are two basic questions: How do we overturn the medicalized representation of disability that portrays impairment as a purely individual matter of physical functioning? And what strategies can we use for representing disability, in Simi Linton’s words, as “a social, political, and cultural phenomenon” (Linton 1998, 133)?

In answering these questions, Siebers explores two related lines of thought. First, he addresses the issue of how to redefine disability identity not as the property of an individual, but as a form of social theory that represents the social and political experience of disabled people. Then, he argues for a paradigm that addresses itself not to individual human bodies, but to the shape, form, and function of the archetypal body for whom our culture is constructed — the body that is welcome in public spaces, the body that has the right to consensual sexual activity, the body that signifies human worth. He concludes that the only way to ensure human rights for disabled people is to represent disability not as an individual calamity, but as the common inheritance of all human beings whose bodies are frail and vulnerable, and who depend upon one another, throughout their lives, for protection and support.

As a professor specializing in disability studies in the departments of Arts and Design and English Language and Literature at the University of Michigan, Siebers concerns himself, first and foremost, with the question of why disabled people are oppressed in our culture. The answer lies in what he calls the “hyperindividualization” of disability (Siebers 2011, 45). Our society, he notes, represents ability as a generalized human trait; in fact, ability is one of the markers of humanity (Siebers 2011, 10). Disability, on the other hand, becomes an individual trait, belonging to unfortunate persons in their particularity, but not representative of humanity as a whole (Siebers 2011, 10). I find this differentiation between ability and disability particularly useful in thinking about what Robert Murphy refers to as the “quasi-human” status of disabled people (Murphy 1990, 110). Does the fact that our culture views disability as a feature of individuals work against seeing disability and humanity as synonymous? After all, if disability is not a part of shared humanity, then it places human beings with disabilities outside of the collective of humanity. The status of the disabled outsider is clear, for example, in the work of Simon Baron-Cohen, who writes that because of an alleged empathy deficit, autistic people are lacking “one of the quintessential abilities that makes us human” (Baron-Cohen 2001, 3).

As became apparent to me in reading Siebers’ discussion of the individualization of disability, the dehumanizing trope of autistic people lacking in empathy is just one iteration of a larger canard against disabled people in general: the charge of narcissism. While Siebers does not specifically address the characterization of autism as an empathy disorder, he points out that the psychological literature is rife with the idea that disability and suffering (nearly always considered synonymous) render disabled people narcissistic; because of their impairments, the literature alleges, disabled people are self-absorbed, trapped in a world of their own, uninterested in anyone else, and unable to love (Siebers 2011, 38-40). Narcissism, much like the autism, becomes an expression of a pathologized individualism. Therefore, when people with disabilities attempt to communicate their pain, advocate for assistance, or struggle against their oppression, they face the charge of being not only hopelessly trapped in their self-absorbed individuality, but also fully responsible for the responses that ensue (Siebers 2011, 34-35). This form of blaming the victim is familiar to those of us who have heard the oft-repeated explanation that a parent or caregiver who kills a disabled person does so under the pressure of the person’s purportedly limitless demands. For example, after the murder of four-year-old Daniel Corby, a local ABC affiliate reported that his mother “was a stay-at-home mother pushed to the edge handling a difficult child with autism” (ABC10 News 2011). The victim becomes responsible for the violence that someone else perpetrates. As Siebers notes, “In short, this is the logic: we killed him, but he made us do it… A more sinister form of violence could not be imagined” (Siebers 2011, 44-45).

It is the hyperindividualization of disability, Siebers believes, that makes disabled people so vulnerable — physically, socially, and politically. I’ve long felt that if others see a person as simply a single individual, they see that person fully alone, unshielded by any group, and available for victimization. Until I discovered the disability community and found out that I was not alone in my experiences, I saw myself as similarly isolated and similarly vulnerable. In this, I am not unique. The distorted perceptions of others, combined with a distorted perception of the self, create the cultural representation of a disabled person who is always an individual, alone and apart. Such a representation helps to create an environment in which disabled people are easily victimized:

[T]he deaf boy on the bus may be entitled to individualized educational planning and medical services, but this special treatment, since it is based on “special rights” and not “civil rights,” exposes him to great isolation and suffering because it ends by symbolizing his individuality as such. (Siebers 2011, 45)

As Siebers notes, the emphasis on disabled people having “special rights” (accruing to individuals) rather than “civil rights” (accruing to members of a group) leaves them particularly vulnerable, because it takes them outside the collective humanity of others and, therefore, outside the protection afforded by the body politic

In order to create a theory of the body that moves past the disempowering individualization of disability, Siebers begins by viewing disability identity as a form of social theory that exposes the power relations between able-bodied and disabled people (Siebers 2011, 33). Although from the center of mainstream culture, ideologies such as ableism — the belief that ability is the measure of human worth — are taken for granted and rendered invisible, disability identity can help to make ableism apparent by describing its impact; Siebers speaks to the power of minority identity to uncover ideology when he writes that the lives of those on the margins “create identities and perspectives, embodiments and feelings, histories and experiences that stand outside of and offer valuable knowledge about the powerful ideologies that seem to enclose us” (Siebers 2011, 8). In this formulation, suffering becomes not an impetus toward narcissism and enclosure in the individual self, but a way of identifying the injustices that cause one’s pain (Siebers 2011, 190). Moreover, a disability identity is not about embracing suffering, but about understanding, analyzing, and critiquing the social structures that cause it (Siebers 2011, 190). The social theory inherent in disability identity, Siebers believes, can lead disabled people to realize that their personal suffering is shared and to join together to create safety, community, and justice (Siebers 2011, 193).

In construing identity as social theory, Siebers moves beyond strong social constructionism into philosophical realism in a way that is very promising for both academic theory and on-the-ground activism. Strong social constructionism, according to Siebers, poses social identity as a construct, but tends to see it as a linguistic representation first and foremost, not as a mode of political analysis and activism (Siebers 2011, 55-56). According to philosophical realism, however, it is precisely because our identities are social constructs that they provide a great deal of information necessary to social analysis and activism. Siebers writes:

Realists, like social constructionists, believe that reality is socially produced. Unlike social constructionists, they believe that social reality, once made, takes on a shape, politics and history that belong to the realm of human action, and as part of human action, it is available for rational analysis and political transformation. (Siebers 2011, 82)

Up to now, I’ve been a dyed-in-the-wool social constructionist, but I’ve always felt somewhat limited by it. The strength of social constructionism lies in its dual understanding that we cannot view bodies outside of culture, and that this insight, in and of itself, is liberating. To some extent, I agree that the core insight offered by social constructionism frees one’s mind from essentialist notions of disability, but as Siebers points out, one can easily become stuck in the individualistic notion that one’s liberation depends on intellectual and emotional clarity (Siebers 2011, 79-80). Much more is needed. Social constructions have a constant impact on the lives of human beings — an impact that we can analyze, work with or against, and change.

In further developing his analysis of identity as social theory, Siebers posits the concept of the “social body,” the body for whom shared spaces are designed — or not designed (Siebers 2011, 85). By looking at the body in this way, Siebers notes, one can easily see the lines of inclusion and exclusion drawn by the architects of architectural and social locations (Siebers 2011, 124-125). I can attest to the power of this way of approaching constructed spaces. With the paradigm of the social body in mind, I now look at a building with stairs but no wheelchair ramp, and I see a building designed for a social body that can easily walk on two legs. When I walk by a building in my town with a sign that reads “Handicap Access: Back of Building,” I am reminded that the front entrance of the building was designed for a social body that is allowed to use the front door, and that another form of the social body must use the back door. In a particularly stunning section of the book, Siebers himself literally brings home his analysis by determining the nature of the social body that is welcome in his own house. After observing such indicators as the width of the doorways, the number and locations of staircases, the heights of cabinets, and the placement of doorknobs and light switches (Siebers 2011, 85-88), he concludes that the social body for whom his house was designed is limited indeed:

In sum, people in wheelchairs, people with diminished sight and hearing, those with difficulty climbing stairs, people uncomfortable reaching high or bending low, and those unable to grasp objects do not fit easily in my house. Nimble six-footers, with an intuitive sense of dark spaces, acute hearing, and a love of staircases do. These are social facts readable in the blueprint of my house. (Siebers 2011, 88)

For me, one of the most powerful aspects of the concept of the social body is that it makes all bodies visible. No body can appear to be “natural” or “neutral.” As Phil Smith notes, under the pressure of social critique, normalcy cannot simply fade into the background as an uncontested category, utterly taken for granted, its privilege and power hidden (Smith 2004, 13). Some bodies are included, and others excluded — not by nature, but by design. Thus, rather than allowing ourselves to think in terms of inclusion and exclusion, a dichotomy that always presupposes a group in the center holding power over a group in the margins, Siebers suggests thinking in terms of accessibility and inaccessibility (Siebers 2011, 94). And so we must ask the questions: On behalf of which social body has a space been made accessible? For which social body is it inaccessible? These questions help to move the focus from individuals who must fear exclusion to the concept of a social space in which no one has the power to deny entrance to anyone else.

Ultimately, though, the concept of the social body does not heal the differential in the human rights granted to disabled and non-disabled people. How do we mend that rift? Siebers’ answer is both simple and profound: If we recognize the fragility of human life as a common inheritance, then disability becomes central to human life, and not its tragic flaw. Because all bodies are vulnerable to injury, illness, and age, disability is not the exception, but “a defining characteristic of human beings” (Siebers 2011, 178). Once we represent disability as a common human experience, it becomes much more difficult to justify withholding rights because of physical difference. As Siebers puts it so eloquently:

What difference to human rights would it make if we were to treat fragility, vulnerability, and disability as central to the human condition, if we were to see disability as a positive, critical concept useful to define the shared need among all people for the protection of human rights? (Siebers 2011, 180)

Moreover, in seeing fragility as central to human life, Siebers argues that we can come to see that independence and dependence are both poles of a false dichotomy — a dichotomy that derives from an individualist paradigm untrue to the nature of humanity. This paradigm, Siebers believes, must make way for a new framework that stresses interdependence, because even those who possess (at least temporarily) what our culture considers normative bodies have a mutual dependence upon one another (Siebers 2011, 182-183). I could not agree more. All human beings must cooperate in such activities as buying and selling goods, constructing buildings, growing food, and raising children. Human society depends upon people benefiting from goods and services that no one person can create alone. Our lives depend upon such interdependence.

The ever-present fact of the fragility of human life is one that our culture turns from in its zeal to celebrate strength, youth, and able-bodiedness. Thus, when disabled people rely upon others for care or assistance, it is considered a loss of dignity and a source of shame. One of the most powerful messages of Siebers’ book is that such a response is neither realistic nor inevitable. His work invites us to consider the transformation in human society that would occur if the reliance of a disabled people upon other human beings were considered neither a shameful nor a tragic turn of events, but a reminder that all human beings rely upon one another for protection, for sustenance, and for life itself.

References

ABC10 News. “Boy, 4, Allegedly Killed By Mother Identified.” http://www.10news.com/news/boy-4-allegedly-killed-by-mother-identified. April 3, 2012. Accessed October 14, 2012.

Baron-Cohen, Simon. “Theory of mind in normal development and autism.” Prisme 34 (2001): 174-183. http://www.autism-community.com/wp-content/uploads/2010/11/TOM-in-TD-and-ASD.pdf.

Linton, Simi. Claiming Disability: Knowledge and Identity. New York, NY: New York University Press, 1998.

Murphy, Robert Francis. The Body Silent. New York, NY: W.W. Norton & Company, Inc., 1990.

Siebers, Tobin. Disability Theory. Ann Arbor, MI: University of Michigan Press, 2011.

Smith, Phil. “Whiteness, Normal Theory, and Disability Studies.” Disability Studies Quarterly 24, no. 2 (2004): 1-24. http://dsq-sds.org/article/view/491/668.

© 2012 by Rachel Cohen-Rottenberg

Source: Facebook

I happened across this graphic on the Facebook page of an anti-vaccination group called the Vaccine Information Network (VINE). The page propagates the twin falsehoods that a) vaccines don’t work and b) vaccines are linked to rising autism diagnosis rates and a purported epidemic of other conditions.

Now, no one has ever denied that severe vaccine reactions occur, but these are rare. And I certainly support the idea of acknowledging those who have been harmed by these reactions. But I do not support propaganda that vastly overstates the number of these injuries as part of a campaign to lower vaccination rates, and I most certainly don’t support propaganda that uses images of disabled people to do it.

Of course, the graphic on the VINE page does not only use images of disabled people for a cause that isn’t ours. No. It does much more. It uses images of disabled people to engender fear. It uses these images to portray disabled people as pitiful, frightening, dangerous, worthless, and without agency. It represents disabled people as diseased and broken. It uses the worst stereotypes of disability as tragedy and social burden and passive victimization. And it does this for the sake of its own agenda, without any consciousness at all of the potential for harm of such stigmatizing images.

Shame on you, VINE. Your ideas about vaccination potentially endanger the public health, and you dehumanize and demean disabled people in the process of propagating those ideas. Time to find yourself a new moral compass. The one you’re using just isn’t working.

© 2012 by Rachel Cohen-Rottenberg

I find it very painful to write about the work of Simon Baron-Cohen. I’ve done so extensively in the past, and this spring, I decided to take a break from it. But there is a passage in his latest book, The Science of Evil: On Empathy and the Origins of Cruelty, that has haunted me since I read it last year, and I feel the need to explore why. I’ve critiqued the book before, but somehow couldn’t touch this passage until now, and I think I understand why: The passage doesn’t simply speak volumes about how others view autistic people in particular, or disabled people in general, but constitutes a particularly telling example of the ways in which our society pathologizes difference and blames people outside the norm for the treatment we receive.

In Chapter 4: When Zero Degrees of Empathy is Positive, Baron-Cohen makes the extreme, pejorative, and wholly incorrect assertion that, for people on the autism spectrum, “Other people’s behavior is beyond comprehension, and empathy is impossible,” and concludes that autistic people have “zero degrees of empathy” (Baron-Cohen 2011, 117). He attempts to mitigate the impact of these statements by saying that autistic people are “zero-positive” because, in his estimation, our systemizing skills enable us to build such things as elaborate moral systems (my elaborate moral system is built on empathy, thank you, but I digress) and cutting-edge technology (for which I have no aptitude whatsoever, thank you, but I digress) (Baron-Cohen 2011, 122-123). Despite this apparent attempt to redeem us from the lack-of-empathy stigma, Baron-Cohen presents the story of a 52-year-old man named Michael, who has Asperger’s Syndrome, as representative of the lives of autistic people, and he characterizes Michael as almost robotic: controlling, anti-social, utterly logic-minded, and incapable of understanding other people’s feelings or of having any emotional responses of his own (Baron-Cohen 2011, 96-100).

To illustrate his view that autistic people are on the zero end of the empathy scale, Baron-Cohen begins by writing about Michael’s childhood. I find two things rather fascinating about Baron-Cohen’s rendering: 1) His descriptions of Michael’s childhood do not illustrate Michael’s lack of empathy, but the lack of empathy of the children around him, and 2) the wholesale lack of empathy on the part of “normal” children goes entirely unremarked. He writes of Michael:

Even as a child he found social situations confusing and stressful. He didn’t play with other children in the playground, was never invited to their birthday parties, was not picked to be on their team. He avoided the playground by going to the bottom of the playing field at primary school — alone — and counting blades of grass. In the winter when it snowed, he became obsessed with the structure of snowflakes, wanting to understand why each one was different. Other children in his class couldn’t understand what he was talking about because in their eyes all snowflakes looked the same. Although the teacher had told all the class that every snowflake is unique, it seemed that he was the only person in the class who could actually see the small individual differences in the snowflakes. The other children in the class teased him, calling him “snowflake brain.” (Baron-Cohen 2011, 97-98)

It’s difficult, at first, to grasp all that is wrong with this passage, because Baron-Cohen is uttering entirely prejudicial things in a very kind and reasonable tone. Let’s start at the beginning: He suggests that a sign of Michael’s lack of empathy is that he didn’t play with other children, wasn’t asked to their parties, and was the proverbial last kid picked for the team. Baron-Cohen seems to take it entirely for granted that Michael is at fault, and that it was quite natural that the other children would reject him because of his as-yet-undiagnosed disability. He gives not the slightest nod to the idea that perhaps Michael didn’t play with the other children because they themselves were unempathetic — because they would not tolerate his confusion and stress, because they rejected him based on his difference, because they shut him out from every birthday party, and because they didn’t want him on their teams.

After continual social rejection, what exactly is wrong with a child running to the other end of the playing field alone and amusing himself as best he can? Counting blades of grass is not a normative response, but that doesn’t make it wrong; in fact, I can certainly understand why a stressed-out autistic kid who is being rejected for reasons he can’t fathom would try to calm himself with a counting ritual. Given the other possibilities for dealing with wholesale social rejection — lashing out in anger at others or doing harm to oneself — an obsession with grass seems to me an entirely non-retaliatory response, and says quite a bit about Michael’s gentleness. Not surprisingly, given the purpose of his narrative, the author never remarks upon this gentleness.

What I find most heart-wrenching, however, is the story of Michael’s fascination with the unique structure of each snowflake, and the ways in which the other children respond to it. Michael’s attentiveness to details that most people miss, and his love for the small and intricate beauty of the natural world, are deeply moving to me. The other children do not see what Michael sees and they do not understand his fascination, but Baron-Cohen does not tar this lack of understanding as a lack of empathy, despite the fact that he considers Michael’s inability to see what other children see, and his lack of interest in what gives them happiness, as prima facie evidence that Michael has an empathy disorder. I’m not sure on what logical basis a scientist could make such a subjective, one-sided, prejudicial assessment, but then again, it’s passages like this one that long ago caused me to give up on the idea of objectivity altogether.

Perhaps the most distressing part of the entire passage is the way in which Baron-Cohen assesses the children’s response: He writes that they “teased” Michael by calling him “snowflake brain” (Baron-Cohen 2011, 98). I take issue with Baron-Cohen’s use of the word “teased.” The children were not teasing Michael; they were calling him names and laughing at him. Teasing is good-natured fun between people of relatively equal power. There isn’t a hint of equal power here, and there is nothing good-natured about making fun of a beautiful thing that brings joy to an isolated, rejected kid. At best, several other children laughing at their defenseless classmate constitutes harassment; at worst, it’s bullying. Anyone who has ever been laughed at as a form of dismissal and exclusion knows exactly what I’m talking about. These are the kinds of microaggressions that accumulate to create self-doubt and self-hatred in those who are the targets of them. But Baron-Cohen does not seem to consider laughing at a vulnerable kid evidence of a lack of empathy in the “normal” children. In fact, he seems to imply that if Michael had any empathy for his classmates, he would have known better than to talk endlessly about snowflakes.

While Baron-Cohen’s much-cherished and erroneous belief that autism is an empathy disorder is the reason for the inclusion of this story in his book, the framing of the story is indicative of a much larger problem in writing about disability and other forms of difference: Non-normative people become responsible for our own social rejection. The accusations launched at Michael and, by extension, at us — that we’re incapable of “normal” human feelings and that we’re trapped in our own worlds — could just as easily be launched at those who reject us. How many “normal” people have enough human feeling to befriend and understand non-normative people? How many “normal” people are trapped in their own “normal” worlds, without any consciousness of what it means to be non-normative? The accusations of lack of caring and lack of engagement adhere to the ones who are different. Those in the majority are simply acting “normally” by doing all the things that, when non-normative people do them, are considered evidence of pathology.

These kinds of accusations are a form of victim-blaming that have no place in a civilized society. That people who consider themselves objective engage in it is an indication of how deeply entrenched a habit of mind it is.

References

Baron-Cohen, Simon. The Science of Evil: On Empathy and the Origins of Cruelty. New York, NY: Basic Books, 2011.

© 2012 by Rachel Cohen-Rottenberg

Although I am not particularly religious anymore, one of the things that I have always loved about Jewish ritual is that it is not about petitioning God for what you want, but about impressing upon your own heart how you want to be. Because of the nature of language, which relies upon a speaking subject and a recipient of that speech, it’s nearly impossible to write a prayer as though it is not addressed to someone else. So in Jewish prayer, the language addresses itself to God, and we ask God for lovingkindness, for patience, for wisdom, for strength. But really, what we are doing is impressing upon our hearts the necessity of constantly going toward lovingkindness, toward patience, toward wisdom, toward strength, because they are already there, very close to us, and not across oceans and skies. The ritual creates a space apart from the noise and conflict of the world, apart from all of its claims for attention, apart from all of its distractions, so that we can remember who we are. By separating ourselves from the world, we find a way to enter it with greater dignity and integrity.

But as I said, I am no longer religious, and I do not participate in these rituals anymore. Their time in my life has largely passed. But I realize how much I still need ritual, still need that place apart, in order to reacquaint myself with whom I am.

Consider this piece such a ritual.

—

I have been writing about autism in particular, and disability rights in general, for nearly four years. During that time, I’ve struggled find my place in the autism community, the autistic community, and the larger disability rights community. And what I’ve found is that I’ve largely had to leave behind any sense of belonging in the autism and autistic communities, because it has become almost impossible to find a place in which I can simply exist as an individual without getting drawn into battles. The landscape is so fraught, the lines are drawn so clearly, the conflict is so intense, the level of rage is so high, that I find myself constantly in a position in which the substance of what I say, depending on where I say it, ends up putting me into camps that I’ve never acceded to being in.

What I have learned is that I have way too much faith in the power of my own authenticity. Up to now, I have assumed that as long as I was perfectly clear about my position, and perfectly clear about my intent, that I would not be seen as being in one camp against another, that people would understand that I am speaking for myself, and myself alone, and that I would be able to safely and freely cross lines and talk to anyone. But it seems almost impossible to exist as an independent entity without appearing to give aid and comfort to whomever someone else thinks is the enemy. If someone mentions me in support of their position, and the person who mentions me is in conflict with others, then all of a sudden, I am viewed as being in that person’s camp, whether or not I have serious disagreements with some of the person’s other positions. If I show up in a discussion and express the opinion that I believe that people of all neurologies and abilities deserve respect for who they are, then I become the enemy of people who tell me that I am simply disseminating a pre-approved ideological message and that I have no notion of the suffering of other people — when, in fact, no one approves my messages but me, and when, in fact, I live to critique ideologies of all shapes and sizes, and when, in fact, I intensely and intuitively recognize the suffering of other people as a nearly palpable presence.

I am not a member of any organization or movement. I am not a member of Autism Speaks, of the Autistic Self-Advocacy Network, or of the Autism Women’s Network, even though I know and respect people who work with all of those organizations. I will work with people who support those organizations if I feel that a particular cause, at a particular moment, is just. I am not a member of the neurodiversity movement or of the autistic civil rights movement, although I support both movements, work very hard for the broader cause of disability rights, and consider both of those movements part of that cause. I largely stay away from organizations and movements because I am most comfortable — and most effective — as an individual who resists these kinds of identifications. I will talk and work with anyone who treats me with respect, whether one person I am speaking to thinks the other person I am speaking to is the most contemptible person on the face of the earth. As long as people refrain from verbal attacks, I will talk with parents who thinks that disability is a curse, and I will talk with parents who think disability is a gift, and I will talk with parents who want their children cured, and I will talk with parents who celebrate their children as they are.

I don’t think of the landscape as a set of binary alternatives. I see it as a place of possibility and creative potential, even as I realize that it is also a virtual minefield. In this, it is really no different from any other landscape.

—

In the midst of this landscape, so fraught with pain and possibility, I am constantly being presented with a choice: do I base my work on rage or do I base it on love?

When I talk about rage, I am not talking about outrage. I’m talking about something far more elemental, and piercing, and consuming than that. I have experienced, when I was younger, that kind of rage. It was engendered by particular people who had done me particular, protracted, horrendous wrong. I no longer feel that rage toward them, nor toward anyone. I left those people behind long ago and, over the years, the pain of what they did has fused not with forgiveness — for there is no forgiving certain things — but with compassionate understanding for who they were. Coming to that understanding doesn’t make me an exceptional person in any way, because I didn’t do it for them. I did it for me.

So when I talk about love, I am not talking about smiling at people who have seriously harmed me and pretending that all is well, and I’m not talking about avoiding conflict, or anger, or outrage, or honest expressions of how I see or what I see. I’m talking about radical love for the dignity and humanity of every person, no matter what they’ve done or what ideologies they hold — a love that is perfectly compatible with utter and complete outrage at whatever they’ve done or whatever ideologies they hold. And that radical love begins with love for my own dignity and my own humanity, however flawed my words and actions might be at any given moment.

I do not see any common ground between basing the work on rage and basing it on love, though I’ve tried very, very hard to find it. I’ve been caught between the two for a very long time, feeling that love isn’t enough because the unjust suffering of the world deserves my rage, and feeling that rage is way too much, because one runs the risk of directing it at anything or anyone that remotely appears to be connected with unjust suffering. Rage at unjust suffering is very problematic, because we are all connected with unjust suffering, in one way or another. There is rarely an ethical choice that is clear and just, where no one suffers. In this society, we all countenance other people’s suffering, and we all ignore it to one degree or another, and we all benefit from it in one way or another. While I write this, on the other side of the world, someone’s child is dying who ought not to be dying; and yet I go on, as though that child does not exist. I’ve got mine, and this child has nothing, and that is not a stroke of luck or a sign of hard work, but the result of an unjust system from which I benefit. And were the roles reversed, I have no doubt that that child would be simply going through her life as well as she can, trying to ease suffering where she can ease it, while I languished unknown and her life made no difference to my pain at all.

So I don’t think I can rage at it all without raging at everyone, including myself. And if I go that way, then where is that clear space, apart from the noise of the world, in which I can come back to myself and go forward with the work?

—

A reminder to the reader: I am not telling you how to be. I am talking about how I want to be.

This is not a petitionary prayer. This is a ritual in which my own truth becomes impressed upon my own heart.

—

I have been caught in the zone between rage and love for so long, that I have not done the love in the way I want to. And I think this is the case because I have learned to see love as a cop-out — as a passive, feel-good way to stay out of the fray and anaesthetize myself to all of the pain of the world.

But now I realize something essential: Active love is the most painful place to be, and the most lonely, in a world of suffering. I think that my rage, when I was younger, was about joining in the suffering, because rage causes me suffering, and it makes me feel a part of others who suffer. At least there was some belonging there. But in a society shot through with extreme levels of verbal violence — in newspapers, political debates, online comment forums, and even, occasionally, the streets of my sleepy little town — basing my work on love makes me feel nearly irrelevant. I wonder to myself: How can love for the dignity and humanity of every person matter when the dignity and humanity of every person is under attack so constantly?

And the answer I find is that it matters because it’s radical love.

—

I am well aware that this post has the potential to be used in any number of ways. Some might use it to defend their positions against other people. Some might think I am just plain misguided. Some might relate to it fully. Some might not relate to it at all. I wish that I had control over how my words are interpreted and used, but I don’t, because that is the nature of putting words out into the world. In order to avoid misinterpretation and misuse, I’d have to be silent, and that I will never do.

I have learned that whatever people think of what I write, they are talking about their own experience. They cannot possibly be talking about me, because there are several degrees of separation between someone’s experience of what I write and who I actually am, inside my body, my mind, my soul, and my own experience of myself.

So if you love this post, you are having an experience of me. And if you hate this post, you are having an experience of me. If this post makes you feel that the world is a wonderful place, you are having an experience of me. And if this post engenders anger and frustration at all that I’m saying and all that I stand for, you are having an experience of me. That is your experience, and I respect your experience, but your experience is not who I am.

I write about my perspective in order to create my still place in the midst of the tragedies of life and to cast upon the waters some words that might help to ease injustice and suffering for someone, somewhere. That is why I write, and for no other reason. Each of us has our own agendas. This is mine. This is who I am.

© 2012 by Rachel Cohen-Rottenberg

I have been reading, with great interest, Susan Wendell’s The Rejected Body. I have been particularly interested in her analysis of our cultural “myth of control” — the notion that we can control our bodies and protect them indefinitely from illness, disability, and death — and the ways in which disabled people become stigmatized for being an affront to this myth (Wendell 1996, 93-94). Wendell writes that the emphasis in Western culture on curing disability, and all of the millions of dollars spent on cures that never come, is a manifestation of our discomfort with the fact that what happens to our bodies is largely out of our control (Wendell 1996, 94). Our bodies age, they break, they do things we don’t want them to, they don’t do things we do want them to, and ultimately, they fall apart and die.

Our faith in science and medicine to exercise control over disability and death means that resources don’t go to the things that we can control for disabled people. I agree with Wendell that medical science should continue to act in the service of easing suffering, healing illness, and saving lives, but the emphasis on control through science is so extreme that we neglect all the ways in which we can make life better for people who are living, right here and right now, with disability (Wendell 1996, 110-111). We spend an inordinate amount of time and money waging war on disability and death, and very little time and money on things that we actually do have some power over — such as whether buildings are accessible, employment is available, housing is affordable, medical care is within reach, and people generally have access to all of the things that make life more than mere survival.

The myth that we can control our bodies against difficulty, illness, injury, aging, and death is simply a blanket denial of physical reality, but the more I look, the more I see this myth all around me. I see it when people assert that you can protect yourself against rape by how you dress. I see it when people hawk the latest weight-loss program, as though within every woman is a sleek supermodel just waiting to be born, and as though it were a mark of shame to be anything else. I see it in advertisements for products that promise to reverse the visible signs of aging, as though aging were an insult to human dignity. I see it whenever I read an obituary about someone having waged a “courageous battle” against whatever they died from, as though they have gone down in defeat, rather than simply surrendered to an entirely natural — and inevitable — process.

Recently, while all of these issues were knocking around in my brain, I happened across the article David Frum on How We Need to Learn to Say No to the Elderly. Please be warned: the article is very painful reading. It is full of blatant ageism, beginning with the entirely inaccurate assertion that elderly people are the worst drivers in America. In point of fact, according to a report from the census bureau for 2009 (the latest date for which such statistics are available), the worst drivers are those between 25 and 34 years of age, with drivers over 65 accounting for the fewest numbers of accidents (just over 8%). And then there’s a lovely graphic showing the proverbial little old lady in the huge automobile about to drive into a terrified 30-something young man. The caption credits Darren Braun for the photo illustration; all I can say is, How proud he must be! The rest of the article is a scapegoating, dividing-and-conquering mess. It blames elderly people on Medicare and Social Security for bankrupting the young and causing the economic woes afflicting the US; in fact, the subhead reads, in part, “If we don’t push back, they’ll steal our benefits and bankrupt the country.” In this, it reads in a manner reminiscent of the tabloid stories in the UK that blame disabled people for the recession (Briant et al. 2010, 9).

So the article was a tough go, but what I found most troubling were some of the responses. I try to stay away from reading comments to most news articles, lest I despair of humanity altogether, but I was anxious to see whether anyone had called out Frum’s absurdities. Fortunately, a number of people had, but a few had chimed in with absurdities of their own. One comment, in particular, caught my eye as an interesting fantasy of what to do about the “problem” of elderly people bankrupting the economy with their lavish Social Security checks. It read, in part:

Simple: fix aging, as in lets use the now rapidly developing sciences of biotech and nanotechnologies to reverse aging….Aubrey de Grey, founder of the Mpize and the SENS foundations (now with the SENS foundation) estimates we need just 1 billion, spent over a 10 year period, to eliminate the day to day damage of aging in a mouse model, then people in the next decade).

It’s not the first time I’ve read someone excitedly going on about science putting a stop to the aging process, and I’m sure it won’t be the last. Every time I see it, I’m caught between wanting to laugh uproariously and feeling myself holding back tears of desperation. On the uproarious side, I find it hilarious that anyone would believe that science could stop the aging process. I mean, the implication is that we’d be young forever and… then what? Never die? How would that work exactly? Once science stops the aging process, would it also stop all other breakdowns in the body? And if that were the case, and no one dies anymore, exactly how are we supposed to all crowd together on this tiny little planet? I realize that, in this culture, death is a bitter pill to swallow for most people, but honestly, it’s the cost of doing business on Mother Earth. We each have our time, and then we leave so that others can have their moment as well. If no one died, the planet would become so crowded that we’d destroy one another.

But mostly, when I read these kinds of comments, I feel a combination of puzzlement and exasperation at the assumptions that underlie them. First of all, there is the assumption that aging is a problem. Personally, I don’t have a problem with my body aging (although I could do without the stigma that attaches). I mean, what’s the problem with aging, except that it’s a sign that you can’t live in denial of death forever? Then, there is the assumption that the problem is in the body, rather than in the world at at large — a common assumption in a society enmeshed in the medical model. Finally, there is the assumption that we need to fix the body instead of the way we structure society and allocate resources. This assumption is the most troubling of all. The idea of putting more faith in science than in the moral conscience and behavior of other people really frightens me. Have we really lost that much faith in the power of human beings to work collectively, to do the right thing, and to make positive political change? Are we really turning our moral obligations over to science, fleeing our responsibilities of care and compassion for one another?

We create a world of suffering: young people can’t find jobs, middle-aged people lose their homes, elderly and disabled people end up isolated in nursing homes or on the street. And then we say, in response to the suffering we’ve created, that if we could only change the bodies of elderly and disabled people, society would work swimmingly. Somehow, the suffering we’ve created outside the body begins to adhere in the body, and the conversation turns to “fixing” the body — ending disability, aging, and ultimately, death. I worry about a world with such zealous faith in science to solve problems that require moral will and political action. I worry because service to one another is the highest calling in human life, and while science can be put in the service of that calling, it can never be a substitute for it.

References

Briant, E., N. Watson, and G. Philo. Bad News for Disabled People: How the Newspapers Are Reporting Disability. Glasgow, UK: Strathclyde Centre for Disability Research and Glasgow Media Unit, University of Glasgow, 2010.

The Daily Beast. “David Frum on How We Need to Learn to Say No to the Elderly.” http://www.thedailybeast.com/newsweek/2012/06/24/david-frum-on-how-we-need-to-learn-to-say-no-to-the-elderly.html. June 25, 2012. Accessed July 4, 2012.

The United Status Census Bureau. http://www.census.gov/compendia/statab/2012/tables/12s1114.pdf. Accessed July 4, 2012.

Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability. New York, NY: Routledge, 1996.

© 2012 by Rachel Cohen-Rottenberg

Source: Facebook

I have only two positive things to say about this graphic:

a) I’m sure the person who put it together had the best of intentions.
b) I love the Victrola in the background.

Now for my critique. Let’s start with the text:

How others see you, is not important.
How you see yourself means everything.

The text is meant to inspire and support us in laying claim to our own self-representations. Okay. Fair enough. It’s abundantly true that my own sense of myself should be more important than other people’s ideas about me. People have told me such things from the time I was a small, sensitive child, overwhelmingly in tune with what people thought about me. What they didn’t tell me was how much my sense of myself and other people’s sense of my self were intertwined. I’ve since realized, of course, that most of us get our ideas about ourselves as a result of how others look at us, how they treat us, and whether they respect and value us. If you’ve been victimized, or bullied, or misrepresented, or otherwise had your sense of yourself messed with, it’s necessary to reclaim your sense of who you are, but it generally doesn’t happen in a vacuum. It takes the support of other people giving you a relatively undistorted mirror in which to see yourself. The need for such a mirror is why I read so widely about the experiences of other disabled people, why I read every piece of disability theory I can get my hands on, and why I have so many disabled friends. If I didn’t, I might actually believe the things that people say about disability.

Which brings me to the question of what people say about disability, and how the graphic uses disability and aging for the purposes of inspiration. The elderly woman in the wheelchair represents the first part of the text: How others see you. What do they see? Literally speaking, they see an elderly woman in a wheelchair. Of course, no one except a Zen master sees anything literally without attaching to it some value or interpretation, so there is a symbolic meaning attached to being elderly and disabled that makes being elderly and disabled a bad thing. Why do I draw the conclusion that a negative meaning has been attached? Because the first part of the text, How others see you, is placed in contrast with the second part of the text, which talks about what’s really important: How you see yourself. The message is that if people see you in a bad light, what’s most important is that you see yourself in a good light. Apparently, to be old and disabled is to be seen in a bad light.

What does one do in such a predicament? Why, one just imagines oneself as a young, typically able-bodied dancer with an hourglass figure — perhaps a former self that no longer exists, perhaps a fantasized self that never existed at all. Apparently, this kind of imagining is what is means to see oneself in a good light. The message is that young able-bodied dancers with hourglass figures are worthy of esteem, but elderly disabled people in wheelchairs are… not. If you are old and disabled, then, and you want to have healthy self-esteem, you need to imagine that you are someone else. I’m not clear on how one does such a thing without losing touch with the reality of one’s own existence, or without becoming so psychically estranged from oneself as to create an unhealthy amount of stress and self-hatred. Perhaps someone can explain that to me. My attempts at pretending to be someone else have generally been met with anxiety and ill health.

At any rate, it’s clear from the graphic that the association of being old and disabled with low self-esteem is simply a given. It is never questioned. It is assumed that there is something essential about aging and disability that is in itself degrading. No attention is paid to the fact that feelings of degradation have their roots in a cultural rejection and abasement of elderly and disabled people. As Susan Wendell points out, we live in a culture with a nearly pathological desire for control, which causes most people to reject people who show signs of aging and disability:

Disability tends to be associated with tragic loss, weakness, passivity, dependency, helplessness, shame, and global incompetence. In the societies where Western science and medicine are powerful culturally, and where their promise to control nature is still widely believed, people with disabilities are constant reminders of the failures of that promise, and of the inability of science and medicine to protect everyone from illness, disability, and death. They are ‘the Others’ that science would like to forget (Wendell 1996, 63).

The symbolic meanings associated with aging and disability — loss, weakness, dependence, and death — provide both an incentive and a justification for rejecting elderly and disabled people. These meanings spare the able-bodied the responsibility for acknowledging the vulnerability of their own bodies, allow them to deny that they could become disabled at any time, and provide a way for them to distance themselves from the inevitability of death (Wendell 1996, 60). Once these meanings are in place, the burden falls on the shoulders on elderly and disabled people to solve the problem of becoming devalued and unwanted. This state of affairs is apparent in the graphic, as the onus is on the elderly woman to imagine herself to be someone else, rather than on other people to see her — and to treat her — as someone who is beautiful, valuable, and respected.

Forcing minority people to shoulder this burden is a process deeply entrenched in our culture. The aim of many professionals is to get us to adjust to our lot in life by changing our own attitudes and perspectives, rather than by fighting to change the attitudes and perspectives in the world at large that cause us so much grief and pain. When my disabilities became apparent in mid-life, I went through a great deal of sadness and frustration over both my physical difficulties and my social exclusion. The ways in which our society treats disabled people were weighing heavily on me, but my therapist insisted that I simply needed to find better coping mechanisms. At one session, I constantly challenged him with a version of “But why is it solely my responsibility to handle exclusion, and not the responsibility of the people who engage in it?” In response, he simply repeated the phrase “It’s your problem,” as though I were missing a necessary piece of wisdom that only repetition would make clear. Needless to say, that was our last appointment.

Of course, I am not at all opposed to disabled people developing coping mechanisms. That’s a necessity. What I oppose is ignoring the conditions in the world at large that force us to spend so much time and energy developing coping mechanisms in the first place. And I resist the idea that imagining oneself to be a member of the unstigmatized majority is a healthy way to deal with stigma. Rather than fantasizing about being someone else, we ought simply to demand that people respect us for who we are.

References

Facebook. http://www.facebook.com/photo.php?fbid=10150887120344632&set=p.10150887120344632&type=1&theater. Accessed June 21, 2012.

Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability. New York, NY: Routledge, 1996.

© 2012 by Rachel Cohen-Rottenberg

The video in this piece, The Power of Words, is a creation of PurpleFeather, a company that provides online marketing services, copywriting, videos, and digital images. The video appears on Purplefeather’s website as as a putative example of its high-quality professional work, and the content is intended to advertise its copywriting services.

I’m tempted to call this video inspiration porn, but it doesn’t quite fit the bill. For one thing, the image of the disabled person is not intended to inspire able-bodied people to rise to great heights of achievement through diligence and a winning attitude. For another, the piece is not intended to get able-bodied people to quit complaining about the problems in their lives. In fact, the disabled person in the video is not meant to inspire, but to provoke pity. This pity works to elicit largesse in a passerby, who uses words in such a way that people will feel moved to open their wallets and do business with Purplefeather.

So it’s not inspiration porn. The term pity porn would come closer. The disabled person in the video is simply there as a pitiable prop, an opportunity for a well-to-do able-bodied character to provide a stunning example of the way that Purplefeather will harness the awesome power of language for you. Watch the video, and you’ll see what I mean.

Here’s how it works.

The piece opens with piano music in a minor key, and shows an older blind man, sitting alone on the street, begging for spare change. The scene then quickly cuts to groups of younger able-bodied people laughing and talking with one another: first a group of three, then a group of two, all women. A well-dressed woman walks by the man as though he is invisible. Another woman sits at an outdoor café smoking a cigarette and watching the world go by. Three more young women are smiling and talking.

The opening sequence establishes the blind man as alone and apart. He is the only male whose face is shown. He is the only older person in the piece. He is the only disabled person in camera range. He is the only one who is not well-dressed. Except for the woman walking by and ignoring him, and the woman smoking a cigarette, he is the only person who is not talking and laughing with someone else. So the impact of the visual rhetoric of the video is that the old man is completely isolated.

The next sequence visually establishes the man as being at the very bottom of the social hierarchy. He is sitting on the ground, while everyone else is standing and walking past him. Even those few philanthropic individuals who give him change don’t bother to stop and hand him the money. They just throw the change in his direction. The blind man tries to find the change, locates it, and puts it in the tin next to a sign that says, I’M BLIND PLEASE HELP. From his position at the bottom of the pecking order, that’s all he can do – beg for help. Then, another well-dressed guy chucks change at him. The blind man gestures to say thank you, but the man has ignored him and hurried off.

Finally, we see a well-dressed woman in sunglasses, followed by a shot of the blind man sitting at the bottom of the steps in a nearly abandoned plaza. This shot brings the message home: He is all alone at the very bottom of the social order, literally and figuratively.

It is his isolation and his abased social status that provide the opportunity for the message of the video. He is alone, he is ignored, and he is not having much luck getting even a few crumbs from the table of the well-to-do. But never fear! A noble humanitarian takes pity and comes through. At this moment, the visual rhetoric of the video fits squarely into the category of the sentimental as described by Rosemarie Garland-Thomson: “The sentimental produces the sympathetic victim or helpless sufferer needing protection or succor and invoking pity, inspiration, and frequent contributions.” (Garland-Thomson 2002, 63) The noble humanitarian in the video not only gives the blind man (unrequested) aid, but becomes the catalyst for increased “contributions” to his cause.

The woman in sunglasses from the previous sequence walks by, turns back, stops, and looks at his sign. Without asking his permission, inquiring about his needs, or you know, maybe just giving him some respect, she takes it upon her noble (and paternalistic) humanitarian self to write on the back of his sign.

I don’t know about you, but if I were sitting on the street with a sign, I would not take kindly to some stranger coming over, grabbing my sign, and deciding to write something on the back of it. I’ve got this thing about boundaries. And strangers.

But of course, in the logic of the video, a blind man has no boundaries because he can’t see what she’s doing anyway. And no one has to talk to him, because, you know, he’s disabled, and poor, and socially isolated. As Bill Peace points out in his excellent takedown of the video, the man has been reduced to complete helplessness, and all the power goes to the nondisabled woman: “This man is dehumanized in the extreme. The poor bastard cannot not even write a sign worthy of a beggar. This is left to an able bodied woman. You know, those all powerful people that can walk, hear, and see.” (Peace 2012)

And then something truly odd happens. The blind man touches the woman’s shoes, without her permission.

I find this strange — not the fact that he is using his hands to see, but the fact that he’s touching a woman’s feet without her permission. I don’t know, maybe everyone in the video is living in some parallel universe without the boundaries I take for granted, but it seems to me that people generally ask permission to touch the shoes of complete strangers. In any case, the fact that he touches her feet simply reinforces his debased social status, because he is so far to the bottom of the hierarchy that the woman does not come to his level so that he can touch her face.

So the woman puts the sign back and goes on her way. And then, woo-hoo! The guy hits the motherlode. Not only does he get a chunk of change, but people walk by and bend down to give it to him instead of just chucking it at him from five or six feet up. He’s got so much spare change that he can’t keep up with it. By the time it’s over, the guy must have made, like, about three dollar and fifty cents. WOW! Score!

In the midst of this windfall, the woman in sunglasses comes by again. The blind man touches her shoes. Again.

And then he speaks. Yes! HE SPEAKS. He has a voice. He asks:

What did you do to my sign?

She finally gets down to face him, but it’s not to treat him as an equal. Oh, no. It’s to patronize him. She says, in her most gentle, concerned, and kind humanitarian voice:

I wrote the same

and then adds, touching him on the shoulder to show her great concern (because don’t we all just LOVE that?),

But different words.

Wow. Deep.

The blind man nods as though he understands what she’s talking about – which is odd because, at this point, I have no idea what she’s talking about. And I find it even more odd that he doesn’t say, “Look, lady, what the hell did you write on my sign?” He simply reaches out and says thank you, while the woman walks off into the sunset, having discharged her kindly humanitarian duty for the day, and with a heartwarming story to tell the family over dinner. Oh, and without putting any money in his tin.

Once she strides off, we can finally see what she wrote:

IT’S A BEAUTIFUL DAY AND I CAN’T SEE IT.

Oh, yes. Of course she wrote that. Of course. Because obviously, as EVERYONE knows, there is nothing – and I mean NOTHING – worse in this world than to be blind on a beautiful day. I mean, if the very thought doesn’t bring tears to your eyes and make you want to do a good deed, I don’t know what would. You’d have to be made of ice not to throw a few pennies in the old guy’s cup, just to lift his poor suffering spirits before you go on your way and forget all about him five seconds later.

And the moral of the story? Get ready:

Change your words.
Change your world.

[cue stunned silence]

WHAT? What, what, what, what, WHAT? How has this guy’s world been changed? Does he have a job? A place to live? Food to eat? Respect? Accommodations? Opportunity? Safety? Inclusion? Justice? There is not even an attempt made to consider these questions. As Bill Peace points out, “No thought, none, is given to why people with a disability may be forced onto the street to beg.” (Peace 2012) How can the failure to ask these questions change the world one iota?

It can’t. But rest assured that most of the people who have seen the video are tearfully nodding in agreement — oh, yes, isn’t it beautiful what the power of words has done for this poor guy! And the world goes on, much as it had before.

References

Bad Cripple. “Purplefeather: Offensive in the Extreme.” http://badcripple.blogspot.com/2011/04/purple-feather-offensive-in-extreme.html. April 11, 2011. Accessed June 13, 2012.

Garland-Thomson, Rosemarie. “The Politics of Staring: Visual Rhetorics of Disability in Popular Photography.” In Disability Studies: Enabling the Humanities, edited by Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, 56-75. New York, NY: Modern Language Association of America, 2002.

Purplefeather. http://www.purplefeather.co.uk. Accessed June 13, 2012.

YouTube. “The Power of Words.” http://www.youtube.com/watch?v=Hzgzim5m7oU. February 23, 2010. Accessed June 13, 2012.

© 2012 by Rachel Cohen-Rottenberg

In his 2011 book Disability Theory, Tobin Siebers discusses the ableist cultural expectation that disabled people should be as able-bodied as possible. Nondisabled people, Siebers notes, are allowed to use an array of labor-saving devices, even when they are physically able to complete their tasks without them. When disabled people want to use devices to increase the quality of their lives, however, these devices are considered a drain on social resources and an unnecessary form of assistance. So while able-bodied people are encouraged to reduce their labor by means of such devices as washing machines and leaf blowers, disabled people are met with resistance when lobbying for ramps and elevators. In short, disabled people are expected to “maintain the maximum standard of physical performance at every moment” and “always present as able-bodied as possible.” (Siebers 2011, 31-32)

The imperative to be able-bodied is ever-present. Well before I was diagnosed with the disabilities I’ve had all my life, it was my mission to be super-able at all times. For reasons I didn’t understand then — but that are very clear to me now — I always felt the need to prove how high achieving I could be, and how far above expectations I could soar. As one of my more insightful managers once said to me, “You only work at normal human speed when you’ve got the flu.” He wasn’t joking. I should have taken that as permission to slow down. I didn’t. And while I take better care of myself now, rest when I need to, and set reasonable expectations for my body, I still find it difficult to not exceed expectations. The habit is both deeply ingrained and constantly reinforced from the outside.

I’m always of two minds about the levels to which I push myself. On the one hand, I like challenging myself, physically and intellectually. On the other hand, I’m not sure that I always like where the impulse comes from. All too often, I’m aware that I feel I’ve got something to prove.

So it was with a pang of recognition that I read a MailOnline story about a woman named Claire Lomas who, this past May, walked the London Marathon wearing a ReWalk exoskeleton. Ms. Lomas had been an accomplished horsewoman before she was thrown from a horse in a riding competition and became paralyzed from the chest down. The ReWalk device enabled her to stand upright and to walk, with arm crutches, the entire 26 miles, over the course of 16 days.

Now, I make it a point to refrain from advising disabled people on how to live their lives, and I don’t feel a particular need to judge whether or not it was a good idea for Ms. Lomas to walk the marathon route. If she felt that walking 26 miles in an exoskeleton was a feat she wanted to accomplish, I feel inclined to support her, although I’m unhappy that she did it to raise money for a cure that may never come, rather than for services to support disabled people in the here and now. For the purposes of this piece, though, what concerns me is not what Claire Lomas the Athlete did, but the way in which Claire Lomas the Story is being written. I’m deeply troubled by the way in which her story has been spun, and by the way in which the ReWalk device is being hailed as the solution for what ails disabled people.

Some of the verbiage in the MailOnline article is rather astonishing in its praise for Ms. Lomas’ accomplishment. The word “heroism” appears twice, and the word “heroic” once. She “conquered” the course, the article crows, after being “liberated from a wheelchair.” (Harris and Thornhill 2012) I’m used to hyperbole from MailOnline, but even the more moderate news outlets couldn’t help but gush. For example, note the way in which an ABC News article describes the feelings of the crowd that had gathered to cheer on Ms. Lomas on her final day of walking:

But they all were there for her, inspired by her determination to finish the race, inspired by her becoming the first woman in a robotic suit to complete a marathon, inspired by her ability to, as she told ABC News today, “just keep persevering.” (Shifrin 2012)

It’s simply not possible, it seems, to cover the accomplishments of disabled athletes without using a variation on the word inspire. But all of this terminology really begs the question: What is so heroic about walking 26 miles over the course of 16 days? What precisely has Ms. Lomas conquered? Why is she considered so inspiring? And how is it liberating to wear a seven-pound suit that enables you to walk between one and two-and-a-half miles a day, only to leave you “aching with pain” and “struggling to stay upright”? (Harris and Thornhill 2012)

The answer: To the able-bodied public, Ms. Lomas heroically battled against her disability and conquered it. She stood upright and walked. She didn’t use a wheelchair, the universal symbol of disability. She became as able-bodied as possible. And for this feat, accolades have poured in from all over the world, and people have considered themselves inspired.

After reading about Ms. Lomas, I decided to find out more about the ReWalk exoskeleton and how it’s being addressed in the media. What I found were sentiments mired in entirely uncritiqued attitudes about disability. For example, let’s look at a March 12, 2011 article in The Economist under the following headline:

The right trousers
Robotics: An artificial exoskeleton, akin to a pair of robotic trousers, promises to bring hope and dignity to paraplegics by letting them walk (The Economist 2012)

Or, to put it somewhat more directly: If you can’t walk on two legs, you are shameful and hopeless. If you think the article gets worse from there, you’re entirely correct. It begins:

CONFINEMENT to a wheelchair is not merely frustrating and degrading. It is positively bad for the health. People confined to wheelchairs often suffer urinary, respiratory, cardiovascular and digestive-system problems, as well as osteoporosis and pressure sores (The Economist 2012).

Note the use of the word “confinement” — a term altogether in contradiction to the experience of millions of wheelchair users who report that a wheelchair liberates them by giving them mobility. Note the appalling idea that using a wheelchair is “frustrating” and “degrading.” Why should sitting in a chair with wheels that brings you from one place to another be frustrating and degrading? The reason: It is a sign of disability. It is a sign of not being as able as possible. It is a sign, according to the writer, of a host of devastating physical problems to which the ReWalk suit is the answer.

The idea that walking around with a seven-pound ReWalk system is healthier for your body than using a wheelchair is wishful thinking, to use the kindest phrase I can summon. Given that the ReWalk device hasn’t been used by very many people for very long, there is absolutely no evidence to support this idea. But of course, the issue isn’t whether the device is actually healthier. The issue is that the device is being hawked to make people appear healthier — that is, without disability. Note the way in which it is being marketed by its creator, Eric Goffer:

Dr. Goffer says his aim is to enable paralysed people to lead normal lives. As well as giving users the ability to walk, the device also helps them regain their dignity (The Economist 2012).

So, all you have to do is wear a bionic suit, and you will live a “normal” life (whatever that means) and walk (literally) in the light of dignity. I’m not sure how this sort of magic works, especially given the fact that no one is going to overlook the presence of a bionic suit and arm crutches when assessing whether a person is “normal” and thereby worthy of respect, employment, housing, services, companionship, and basic human rights. But from the perspective of the writer, the simple act of walking gives one dignity, while the simple act of sitting robs one of it. Who knew it was that easy?

In order to maintain this mythology, the imperative to be as able as possible is placed firmly on the back of the disabled person. Able-bodied people needn’t bother themselves to help, as the writer makes abundantly clear:

When someone is in a wheelchair his head is at the height of an average person’s waist. This literal diminution of his stature can reduce his metaphorical stature, too. Once able to stand up, his stature, in both senses of the word, is restored—and that can be just as valuable as the health and mobility benefits (The Economist 2012).

In other words, under no circumstances could able-bodied people be expected to expend the effort required to use their able bodies to sit down and be at eye level with a person in a wheelchair. No. Perish the thought. Instead, a person who is paralyzed has to wear a $120,000 bionic suit in order to stand up. Could the imperative to be as able-bodied as possible be any clearer?

I worry about these kinds of articles, for a host of reasons, not the least of which is that people who could benefit from the mobility a wheelchair offers simply refuse to use one because they have been made to feel ashamed. Along these lines, Dave Hingsburger recently wrote about a conversation he had with a woman who said that her aging mother was too proud to use a wheelchair, and that she admired her mother’s attitude — despite the fact that the woman’s “pride” was rendering her housebound. Dave’s response was a reminder of the way in which the imperative to be able-bodied can hold us prisoner:

I suggested to her that maybe the fact that people admire her for clinging to non-disabled status is what keeps her clinging to non-disabled status. Maybe the idea that using a wheelchair involves a loss of pride rather than a gain of mobility is what keeps people shut in. (Hingsburger 2012)

The adulation over the ReWalk device is just one example of the public shaming of people with disabilities, and it has significant consequences. People would rather be shut in than be seen in public in a wheelchair. People would rather live in fear and self-hatred than become a visible part of the disability community.

The only alternative to this kind of shaming is pride. As Dave Hingsburger says so eloquently:

We need disability pride because people seem to assume we live with disability shame (Hingsburger 2012).

Indeed.

References

The Economist. “The Right Trousers.” http://www.economist.com/node/18304226. March 10, 2011. Accessed June 6, 2012.

Harris, Paul and Ted Thornhill. “Give Claire a medal! Tim Henman leads calls for organisers to reward paralysed marathon ace who finished Marathon in 16 days… as she raises £130,000 for charity.” MailOnline, May 10, 2012.  Accessed June 6, 2012. http://www.dailymail.co.uk/news/article-2141302/Claire-Lomas-Paralysed-woman-completes-London-Marathon-bionic-suit.html.

ReWalk Bionics Research. http://rewalk.us/about-2/. Accessed June 6, 2012.

Rolling Around In My Head. “Throne of Shame.” http://davehingsburger.blogspot.com/2012/06/throne-of-shame.html. June 7, 2012. Accessed June 7, 2012.

Shifrin, Nick. “Paralyzed Woman Finishes London Marathon.” ABC News, May 8, 2012. Accessed June 8, 2012. http://abcnews.go.com/International/paralyzed-woman-finishes-london-marathon/story?id=16304503#.T9I447UdM9B.

Siebers, Tobin. Disability Theory. Ann Arbor, MI: University of Michigan Press, 2011.

© 2012 by Rachel Cohen-Rottenberg