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On Autism and the Colorado Shooting: An Open Letter to Joe Scarborough and MSNBC
Jul 28th, 2012 by Rachel Cohen-Rottenberg

Dear Mr. Scarborough and MSNBC:

Nearly one week has passed since you, Mr. Scarborough, made the false and unsupportable claim that most people who commit the kind of violence seen in Aurora, Colorado are on the autism spectrum.

Your statement was both prejudicial and factually incorrect. Not a single mass murderer has ever been diagnosed with autism. Not one. Moreover, there is no evidence linking autism to premeditated, criminal violence. Absolutely none.

You have not set the record straight. Your employers as MSNBC have not set the record straight. Why is that? Journalists have an obligation to provide accurate information and to issue a retraction when they are in error. It’s really quite simple. What has gone awry at MSNBC that no such retraction has occurred?

It’s not as though, in the past week, retractions and apologies are without precedent. The president of ABC News has issued an apology for Brian Ross’ irresponsible statement that the Colorado shooter was a member of the Tea Party. Why has MSNBC not followed their lead? Why has MSNBC failed to retract and apologize for an equally incorrect and potentially damaging statement?

Many of us have spent years in the trenches educating people about autism, dispelling myths, working toward acceptance, and advocating for inclusion. Many of us have spent countless hours worrying about what will happen to people on the autism spectrum — the children coming up, the young adults beginning to make their way in the world, the older people dealing with a lifetime of rejection — in a world full of so much negative and false information. Many on the spectrum have borne the brunt of physical violence, bullying, and shunning. Countless family members and friends have watched their loved ones bear it.

And all of us — all of us — have cried bitter, bitter tears over a world that does not see people on the autism spectrum as fully worthy of the rights and protections that most people take for granted.

And yet, through our tears, we keep trying. We keep building. We keep working.

And then you come along, Mr. Scarborough, with both the privilege and the responsibility that come with reaching millions of people, and you utter falsehoods that have the potential to undo the progress we have labored for so long to achieve. And you did it at a moment at which the nation was wounded and our hearts were bleeding — a moment at which we were hungry for answers.

And you gave America the wrong answer, Mr. Scarborough. You made a group of innocent people the representatives of the horror wrought by one man.

You can go a long way toward healing the damage. You can take responsibility for yourself and for your words. You can issue a full on-air retraction, one that will reach millions of viewers, and you can clarify that autism does not in any way, shape, or form predispose people toward the kind of heinous violence perpetrated in that movie theater in Aurora, Colorado.

And if you don’t take responsibility, Mr. Scarborough, your employers at MSNBC certainly should.

Over 10,000 people have signed a Change.org petition demanding a full retraction, and the numbers are growing. They are outraged, and rightly so. They know an injustice when they see it.

Listen to them. They are telling you what you need to know. Please fulfill your professional and ethical obligations. Set the record straight.

Sincerely,

Rachel Cohen-Rottenberg

© 2012 by Rachel Cohen-Rottenberg

Despicable: Joe Scarborough’s Words on Autism and Mass Murder
Jul 23rd, 2012 by Rachel Cohen-Rottenberg

We in the disability community knew it was coming. We’d known it for days.

After a young man in Aurora, Colorado took the lives of 12 people, wounded 58, and left nothing but grief and misery behind him, we knew they’d start rounding up the usual suspects. They always do.

And they did — on the television, in the newspapers, and on the Internet. Pundits, reporters, and ordinary people all decided one thing: He must have been mentally ill. After all, how could a sane person do such a thing?

It’s as though utterly ordinary people don’t do atrocious, violent, unthinkable things every day of the week. I sometimes wonder whether people in this country are aware of the sheer level of violence that goes on all over the world, every minute of every day, perpetrated by folks who are neither mentally ill nor delusional. And I sometimes wonder why the message hasn’t gotten through that most mentally ill or delusional people never harm anyone — except perhaps themselves.

And then I remember: Oh yeah. People love a scapegoat. So, hey, they figure, let’s go after some of the most vulnerable, stigmatized people out there. Let’s choose people who are the victims of crime far, far more often than they are the perpetrators. Let’s choose people on the margins, without a lot of power. Let’s choose people who have already been kicked to the gutter. Yeah. Let’s do that. The hell with them. They’re not worth much anyway.

And, by all means, let’s ignore the fact that most of the people who commit these crimes have two things in common: they are young and they are men. God forbid that we should ask ourselves, What are we doing to our young men that makes them do such things? What are we teaching them? What are we not teaching them? No. It has to be someone else — that crazy person over there. Not my son. Not my neighbor. Not someone I might chat with on my front porch. Someone else. Someone other.

I saw it beginning to happen. And then there was more. I saw people in You Tube videos and in the comments on news sites opining that the shooter must have been autistic — as though that would explain it. It was disturbing to read, but I thought, You know, Rachel, you can’t get upset with every ignorant person with an Internet connection and a YouTube account. Don’t give them your energy. I figured that the folks whose words I was reading didn’t have that much reach, and I comforted myself in the knowledge that people were speaking up and countering the ignorance with information. It was an uneasy kind of comfort, but it was comfort nonetheless.

And then I woke up this morning, and I read what had come out of Joe Scarborough’s mouth. On Morning Joe, an MSNBC program with an audience of millions of viewers, Joe decided that it was time to join the He Must Be Autistic chorus. According to an article on Politico.com:

“You don’t want to generalize,” MSNBC’s Joe Scarborough said today before saying that James Holmes, the suspected Aurora, Colo., shooter, was “on the autism scale.”

“As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale,” said Scarborough, whose son has Asperger’s syndrome. “I don’t know if that’s the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses — they can even excel on college campuses — but are socially disconnected.”

Whenever I hear the phrase You don’t want to generalize, I brace for impact, because I know that what’s about to come next is a disaster. In this case, the disaster was, as my kid would say, epic. The disaster consisted of two bombshells falling to earth, one right after another, and blowing to smithereens the hard work of autism advocacy carried out by thousands of autistic people, autism parents, and autism professionals.

First, there is the absolutely false idea that people who commit mass murder are on the autism spectrum. According to Joe, it happens more often than not. What? Where’s the evidence? Oh, right. There isn’t any. Because it’s not true. There has never been any evidence whatsoever that autism is associated with criminal violence. It makes me feel sick to even have to counter this nonsense, but I have to, because now, millions of people are going to believe it.

And then, there’s the image of autistic people who can “walk around in society” looking like everyone else, putting together respectable GPAs, and seeming so utterly, utterly ordinary, until one day — well, you know. I’d like to take this moment to thank Joe for representing autistic people, in the popular mind, as ticking time bombs. Well done, Joe! I’m sure the next ethical, talented, gentle autistic young man who doesn’t get a job because the hiring manager thinks he might be the next office shooter will thank you. Maybe he’ll even name his kid after you. And what about the shy kid with Asperger’s who already has difficulty making friends? What will happen to him with such falsehoods circulating in the world he inhabits? And what of older autistic people, heading into their elder years facing exclusion and ignorance? What about them?

I wonder sometimes. Do people like Joe Scarborough know what it means to be that stigmatized? Do they have any idea of the fear it engenders in people? Do they have any idea of how it tears at the heart?

I don’t know. But I do know this: We can’t let such things go without protest. So please, let Joe Scarborough and the folks at MSNBC know how you feel by leaving your comments at the Morning Joe feedback page. And remember to sign my online petition asking Joe Scarborough and MSNBC to issue a full retraction of Joe’s remarks.

Please add your voice to the outcry. Thank you.

© 2012 by Rachel Cohen-Rottenberg

A Troubling Local Encounter
Jul 21st, 2012 by Rachel Cohen-Rottenberg

I live in a small town in southern Vermont. As most people in town know, there is a man who walks back and forth in front of the post office every day carrying a long scroll of papers. He has been doing so for about five years. He never stops long enough for anyone to read what is on the papers, but words like “Bush” and “Cheney” are clearly visible. For him, it is some form of protest. The papers are laminated and attached end to end. If you laid them out flat, they would probably extend for twenty to thirty feet.

The man doesn’t speak, but he coughs loudly from time to time, and he tends to give people a very wide berth. I have never seen him interact with anyone; he just walks back and forth constantly. Each day, he parks his car in front of the post office, with a sign on the dashboard that says that he is the President of the United States. He appears to be living independently and to be physically healthy.

I often think about this man. I find his continued presence downtown very heartening — an indicator of the level of acceptance in town for people outside the norm. I’ve never seen the police attempt to get him to move on — although I’ve read that, in the past, he would spend days sitting in a phone booth pretending to make calls until the police told him to stop keeping other people from using the phone. I’ve never seen anyone on the sidewalk hassle him — not post office employees, not customers, not pedestrians. From what I’ve seen, people just go about their business and let him be.

He appears to have a mental disability of some kind. I don’t know the nature of his disability or how he feels about his life, but I’ve always been glad that he lives his life out in the open.

On Thursday afternoon, I walked up to the post office to mail a book. It was absolutely sweltering outside. It was one of those days when you feel as though you’re pushing through moisture with every step. I saw the man with the papers on the side street that runs alongside the post office. He crossed the street as soon as he saw me coming. I noticed that for a tall man, he seemed rather timid, as though getting into close proximity with other people would upset him.

After I’d finished my business in the post office, the man was out front, walking back and forth, clearly moving in order to avoid people. I started heading home. After I’d reached the end of the block, a middle-aged guy came up to me with a smile, pointed at the man with the papers, and said, “I’ll give you $20 to run up to him and kiss him.”

I was so taken aback I hardly knew what to say.

The man was inviting me to conspire with him in being a bully. He assumed that I’d agree with him that a mentally disabled man was an object of derision. He thought he’d get me to laugh with him about the idea of harassing the man. In fact, he was willing to pay me to harass him, and he was hoping I’d do it so that other people would see it and have a good laugh.

When these things happen, I always feel paralyzed with disbelief. I absolutely cannot understand why a person would find any of it funny. All I could feel at that moment was the necessity of defending the dignity of the man in front of the post office. So I said, “No. He keeps to himself, and he does no harm to anyone. He’s fine.”

The man looked at me as though he couldn’t quite believe that I would not join him in a good laugh about a disabled guy. And then he walked on.

I found this encounter extremely disturbing, for a number of reasons. It was a reminder of how petty and cruel people can be. It was a reminder that perhaps my little town isn’t as accepting as I thought it was. It was a reminder that perhaps the man at the post office puts up with more abuse that I thought he did.

But there was more. It wasn’t until the next evening that I realized that not only had I been asked to violate someone else’s boundaries, but that my own boundaries had been violated as well. After all, why had a total stranger come up to me and offered to pay me money to kiss someone?

I’ve been reflecting since then on the intersection of gender and disability in this encounter. The man who offered to pay me to bully a visibly disabled person chose me because I’m a woman. It would be hard to imagine him asking a man to go up and kiss another man; the risk of inflaming the average man’s homophobia likely kept him from it. But a woman was a safe target. It seemed perfectly okay to him to ask a woman to kiss someone and to offer to pay good money for it.

But the joke was on him, really. Because my disabilities are generally not apparent unless you spend some time with me, he had no idea that he was talking to a disabled woman. He had no idea that, unlike so many people, I do not fear other disabled people. He had no idea that I do not think it’s funny to make disabled people the butt of a joke. He had no idea that I do not see disabled people as half persons whose feelings I don’t have to bother to consider. He had no idea that I do not think that disabled people lose the right to be left the hell alone on a public street when it’s clear that they want to be left the hell alone on a public street.

It saddens me that all that I take for granted still hasn’t quite made its way into the minds of so many. It saddens me that a grown man wouldn’t know to treat a fellow human being with respect. It saddens me that so many people don’t see harassment and bigotry against people with disabilities in the same light that they see harassment and bigotry against people on the basis of race, ethnicity, or religion. It saddens me that we’re still fighting this fight.

It was a brief moment, on a summer day, in small New England town. But it spoke volumes about how people still look at disability, and it reminded me how very far we have to go.

© 2012 by Rachel Cohen-Rottenberg

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

Rachel Cohen-Rottenberg
Union Institute & University
Spring-Summer semester, 2012

Beginning with Erving Goffman’s ground-breaking 1963 book Stigma: Notes on the Management of Spoiled Identity — a masterful examination of the nature of stigma as a social construct — scholars and activists over the past five decades have extended our understanding of how stigma operates and the purposes that it serves. While acknowledging the seminal nature of Goffman’s work, more recent thinkers have demonstrated that his analysis is of limited use for analyzing disability stigma, because it addresses how stigma works in social interaction, but not why people engage in stigmatizing behavior. Fortunately, more recent work has provided a number of tools for analyzing the emotional, cognitive, and political uses of stigma. These tools are essential for understanding how visual and textual media work to maintain the cultural stigma against people with disabilities.

This paper explores my contention that, from an emotional and cognitive perspective, mainstream representations perpetuate disability stigma by making disabled people the symbols of our culture’s deepest fears about any potential loss of moral, sexual, or physical control. I posit that the projection of these fears onto disabled bodies results in a number of dehumanizing extremes, and that once these contradictions are in place, disability representations become a means of political and social control, reinforcing the strictures of “normalcy” to which disabled people can never conform. By examining research on the impact of stigma in general, I argue that people with disabilities experience a host of problems in the face of stigmatizing representations, including loss of self-esteem, poor health outcomes, social isolation, and victimization through physical violence.

I will begin my exploration of these issues by briefly examining a number of theories about stigma, and by reviewing the ways in which recent scholarship has moved beyond analyzing the mechanics of the stigmatization process in favor of understanding why human beings engage in stigmatizing behavior at all. Next, I will look at the ways in which mainstream representations use contradictory extremes to construct and reinforce disability stigma; once I have done so, I will go on to analyze the strategies that these representations use to perpetuate the drive toward “normalcy” and to maintain social control. I will conclude the paper by acknowledging the impact of stigma on disabled people and the need to resist stigma by speaking in our own voices about the disability experience.

Theorizing Stigma: Moving from the How to the Why

At first glance, Goffman’s analysis of stigma holds much promise for understanding disability stigma. He defines stigma in a way that resonates as much for disabled people as for any other minority: he calls stigma an attribute that is “deeply discrediting” and that renders the stigmatized person “not quite human” (Goffman 1963, 3). Moreover, Goffman is quite specific in his assertion that stigma and the inferiority it assumes do not inhere in the discredited attribute itself, but that social groups attach meaning to forms of human difference in ways that result in discrimination and unequal access to the rights and privileges of a society (Goffman 1963, 5). However, as Susan Wendell points out, Goffman seems to unconsciously adhere to an essentialist idea of stigma when it comes to disability, and does not question the meanings assigned to disabled bodies; rather, he perpetuates those meanings (Wendell 1996, 58). For example, Goffman describes disabilities as “abominations of the body” and “physical deformities” — deeply negative and stigmatizing judgments of physical difference (Goffman 1963, 4, cited in Wendell 1996, 58). Thus, Goffman falls into the trap of assuming that the support networks formed by disabled people are by nature inferior to the social interactions that take place in the larger society, calling social groups of disabled people a “half-world” in which they can “lament” their fates (Goffman 1963, 20-21, cited in Wendell 1996, 59).

Of equal significance is the fact that Goffman is far more interested in examining how the stigmatization process works in social interaction than in examining its origins and uses. He therefore does not examine the root causes of stigma or the larger political and social purposes it serves (Gleeson 1998, 21). As such, his work is of limited value when addressing how to combat disability stigma. However, later theorists have addressed the causes and uses of stigma in ways that can help to answer the question of how to begin to dismantle it. For example, Lerita M. Coleman Brown explains stigmatization with reference to three mutually reinforcing processes, each of which an exercise of personal and political will can interrupt: 1) an emotional process, in which fear becomes attached to difference (Brown 2010, 182-183); 2) a cognitive process, in which the mind’s ability to socially categorize other people devolves into degrading stereotypes that blot out individual characteristics and devalue members of one group as inferior to those of another (Brown 2010, 183-185); and 3) a process of social control, in which nonstigmatized people use stigma to rationalize exploitation and exclusion, and to maintain majority-minority power relationships (Brown 2010, 185-187). Bernice Pescosolido and her colleagues have developed a similar framework for understanding stigma, exploring the ways in which emotional, cognitive, and structural processes create it and negative media representations reinforce it (Pescosolido et al. 2008, 431-440). Moving beyond emotional and cognitive explanations, Richard Parker and Peter Aggleton weave together the work of Goffman and Foucault into an analysis of why stigma is necessary to the legitimization of injustice and unequal power imbalances (Parker and Aggleton 2003, 18).

From an emotional and cognitive perspective, disability stigma is an expression of all that the nondisabled majority rejects. Wendell argues that disabled bodies become sites of projection for the fears of the able-bodied majority, with the result that disabled people are placed into the category of “the Other.” When we make someone “the Other,” Wendell notes, we see the person as an object on which to project meaning, rather than as a subject constituted by personal, social, and political experiences. Once the person has become an object, we make the person symbolic of what we seek to reject in ourselves (Wendell 1996, 60). As Wendell goes on to show, what people in our society fear the most is loss of control, particularly regarding bodily function (Wendell 1996, 63). Because disabled people cannot control their bodies in order to comply with cultural norms, the disabled body becomes “the rejected body” onto which able-bodied people project their fears about their own physical vulnerabilities — and their own failures to meet increasingly narrow ideals of body shape and health (Wendell 1996, 85). Thus, disability becomes synonymous with “imperfection, failure to control the body, and everyone’s vulnerability to weakness, pain, and death” (Wendell 1996, 60).

Contradictory Extremes: Disability Stigma in Mainstream Representations

The projection of human vulnerability onto disabled bodies results in representations of disability as synonymous with victimhood, helplessness, incompetence in all tasks, and constant need. Nearly 30 years ago, Irving Zola explored such messages about disability in print media, television, and film, noting that prime-time television dramas, particularly medical dramas, depict disabled people as impotent and dependent, without intimate relationships and without work (Zola 1985, 8). In 1988, Michelle Fine and Adrienne Asch analyzed the social-psychological literature and found that researchers similarly represent physical impairment as a source of victimization by locating all of the difficulties associated with disability in the body, rather than in the social exclusion, architectural barriers, discrimination, and stigma that disabled people meet in the world around them (Asch and Fine 1988, 8-11). Moreover, as Fine and Asch assert, the literature represents disabled people as ceaseless burdens — the perpetually helpless recipients of the assistance of others (Fine and Asch 1988, 12-13). Underlying this characterization are a number of baseless assumptions: that because disabled people need help in one area, they need it in all areas; that a need for support will disrupt reciprocity in friendships and intimate relationships; and that disabled people always receive caregiving, but never provide it (Fine and Asch 1988, 13). As Rosemarie Garland-Thomson asserts in a similar vein, “the disabled are portrayed as helpless, dependent, weak, vulnerable, and incapable bodies” (Garland-Thomson 2002, 8).

It is my contention that stigmatizing disabled people as entirely passive — helpless, incompetent, and dependent — makes disabled bodies a blank canvas on which a number of paradoxes are inscribed. Moreover, I see all of these paradoxes as projections of the cultural imperative that we maintain control of our bodies at all costs, and of the underlying terror of losing control. I agree with Wendell that the imperative toward control derives from a cultural denial that our bodies fall apart and that we die, but I would extend Wendell’s analysis by positing that the fear of losing control extends into all areas of our existence, especially regarding our moral and sexual lives.

Thus, stigmatized and rejected as victims who embody the worst fears of able-bodied people about the frailties of the body and the inevitability of death, disabled people also find themselves caught in a number of contradictory categories that express the unresolved fears that able-bodied people carry about their moral and sexual lives. In making use of these categories, the mainstream world represents disabled people as morally deviant and threatening, but also spiritually innocent and pure; hypersexual and sexually deviant, but also asexual and childlike; and vulnerable and helpless, but also heroic fighters who can overcome all odds. One side of each paradox reflects an extreme loss of control; the other side counters it with the image of an uncommonly high level of control. Because disabled people are subjected to the stigma of being characterized according to contradictory extremes, their social status as full human beings is severely compromised, particularly in a culture that sees moderation in all things — “the middle way” — as a significant value (Davis 2010, 5).

The myth that disabled people are both morally deviant and spiritually pure has a long history. As Colin Barnes points out, during the Middle Ages, both laypeople and clergymen associated disability with evil, believing that disabled children were “changelings” left by the Devil in place of “human” children (Barnes 2010, 21). Across cultures and historical time periods, disability has been considered an indicator of villainy, with disabled children called a punishment for their parents’ transgressions and acquired disability interpreted as a sign of having committed a moral wrong (Haller 2002, 169-170). Such representations continue well into our era, as reflected by Marilyn Dahl’s conclusion that children’s literature and popular media make abundant use of disability and ugliness as signifiers of evil intent and criminal behavior (Dahl 1993, 1). As Simo Vehmas asserts, the question of whether disabled people can be moral derives from a belief in Western culture that only rational people can be ethical; therefore, people who appear to have any form of cognitive, intellectual, or emotional disability are considered “amoral” (Vehmas 2004, 34). Given the cultural assumption that disability in one area implies incompetence in all areas (Wendell 1996, 63), the question of moral deviance potentially extends to all people with disabilities. And yet, as a counterpoint, depictions of disabled people also make disability a metaphor for innocence. As Dahl notes, classic children’s literature has been known to represent disability in ways that render the characters spiritually pure, as in depictions of the “blind seer” or the “selfless dwarf” (Dahl 1993, 1).

Not surprisingly, these paradoxical characterizations of disabled people as both morally deviant and spiritually pure also find their expression in sexual terms: disabled people are considered hypersexual and perverse, on the one hand, and asexual and childlike, on the other. Mark Sherry notes that disabled people are considered freaks in a number of ways, particularly regarding the extremes of hypersexuality and asexuality: “Disabled people have been ‘queered’ through various cultural processes of enfreakment, particularly those that produce (often contradictory) notions of asexuality, vulnerability, inexhaustible sexual voraciousness, perversion, and exoticism” (Sherry 2004, 781). Tom Shakespeare notes that dwarves, in particular, carry the stigma of hypersexuality, but goes on to suggest that any form of sexuality among disabled people is, to quote one of his respondents, “monstrous and perverted” (Shakespeare 2005, 61). This characterization of sex for disabled people derives, as Tobin Siebers points out, from the conflation of having a “healthy sex life” with being able-bodied; any attempt to engage in sexual activity in a non-normative way is considered deviant (Siebers 2011, 141-142). Not surprisingly, then, disabled people who need facilitators in order to engage in sexual activity are considered to be engaging in immoral acts (Sherry 2004, 781).

In counterpoint to the myth of sexual deviance, the culture generates a pervasive assumption that disabled people have no sexual desire and cannot engage in sexual activity at all. Many nondisabled people see disabled people as asexual (Baxter 2008, 563), and such popular films as The Men, The Waterdance, and Forrest Gump make this assumption a staple of entertainment, especially when representing physically disabled men (Shakespeare 2005, 60). Nancy Mairs, a woman with multiple sclerosis, puts the characterization of asexuality most succinctly when she writes:

When it comes to sexuality in the disabled, dismissal is apt to turn into outright repression. Made uncomfortable, even to the point of excruciation, by the thought of maimed bodies (or for that matter, minds) engaged in erotic fantasy or action, many deny the very possibility by ascribing to them the innocence of the very young. (Mairs 2002, 162)

In other words, because many nondisabled people see sex among disabled people as deviant, they react by casting disabled people as purely asexual.

The characterization of disabled people as alternately threatening and pure finds a more subtle — but no less troubling — expression in the contradictory characterization of disabled people being either “bitter crips” absorbed in their own suffering, or “super crips” who heroically defy the odds (Hardin et al. 2001, 1). Much of the psychological literature characterizes disabled people as bitter crips, alleging that their suffering turns them into narcissists who blame others for their own pain (Siebers 2011, 34), who are unable to love (Siebers 2011, 40), and who have marginalized themselves “for perverse and selfish reasons” (Siebers 2011, 42-43). Clearly, the bitter crip characterization carries with it suggestions of moral deviance and social threat. Moreover, as Siebers points out, the charge of narcissism constitutes an insidious means by which disabled people are blamed for their own marginalization and disempowered from fighting for their civil and human rights; any attempt at speaking in their own voices becomes morally questionable. Thus, according to Siebers, “the isolation, suffering, and claims to attention of people with disabilities are turned against them and…their reactions to their own disability become the proof of defects even greater than physical ones” (Siebers 2011, 35).

As part of the stricture against becoming a bitter crip, the culture demands that disabled people become super crips, heroes who “overcome” their disabilities — as though disability itself were a state of complete, passive nonfunctioning. Such heroes appear in the popular media on a regular basis. Goggin and Newell observe that many news stories about the Australian Paralympics describe the participants as “exceptional people with disabilities surmounting the impossible” (Goggin and Newell 2000, 79). The implication is clear: disability is a sign of utter helplessness that only a hero can overcome. Moreover, disabled people must rise to the level of heroism in order to be considered of worth. As Thomas Hehir points out, paraphrasing Cyndi Jones in Joseph Shapiro’s 1994 book No Pity: People with Disabilities Forging a New Civil Rights Movement, our culture’s default response is to treat disabled people with pity, and respect only comes when disabled people accomplish extraordinary things (Hehir 2002, 3).

If we look at stigma as a result of cognitive and emotional processes, we can see that the cultural imperative of maintaining control, and the terror of powerlessness that underlies it, result in the contradictory extremes by which mainstream society represents disabled people. However, what of Brown’s contention that there is an aspect of social control to stigma (Brown 2010, 189)? What of the conclusion reached by Parker and Aggleton, that stigma is a necessary part of maintaining structures of power and domination (Parker and Aggleton 2003, 18)?

Social Control: Perpetuating the Myth of Normalcy

For clues as to how the stigma of disability is deployed for the purposes of social control and power, one must understand the tyrannical role that the ideal of normalcy plays within our culture. As Lennard Davis notes, the concept of “normal,” which many people take for granted as a synonym for “natural,” did not exist in American or European culture until the mid-nineteenth century (Davis 2010, 3-4). The idea of the norm arose from the field of statistics, beginning with the French statistician Adolphe Quetelet, who calculated a statistical average of human qualities that became the image of l’homme moyen — a non-existent average man who was simply a statistical construct (Davis 2010, 5-6). Later in the nineteenth century, in keeping with the aim of the eugenics movement to create human beings in whom all deviation from the norm would be erased, Sir Francis Galton converted the bell curve into quartiles, ranking each section of the curve from lowest to highest. Those ranked highest were valued as key to the progress of society; those ranked lowest were targeted for elimination by means of eugenics (Davis 2010, 9).

Once the ideal of normalcy was in place, disabled people became associated with members of all other groups with “abnormal” traits, such as criminals and the poor, and ranked on a scale in which they were believed to impede human progress and the moral and physical health of the nation (Davis 2010, 10). From there, the highest imperative for citizenship — and humanity — was to be “normal,” and the rights and privileges of a society became apportioned on that basis. Of course, the “norm” is always defined by deviations from it, so the privileges that come with “normalcy” depend on defining subjects who do not fit the ideal (Smith 2004, 13). With regard to disability, the larger culture accomplishes this purpose by projecting onto disabled people all of the ways in which able-bodied people fear being out of control — morally, physically, and sexually. The fear of being non-normative, then, creates a stigma from which most people, if they can, will attempt to escape (Davis 2002, 105).

Cultural representations reinforce the strictures of normalcy — and, in the process, reify the stigma attached to being non-normative — in a number of ways. One method is to communicate the explicit message that being normal is both an unquestionable right and unquestionably right. Rebecca Dosch Brown analyzes one such example in her piece about a television segment called “Siblings with Autism” that aired on WPIX in New York in April of 2011. The host interviewed the typically developing siblings of autistic children, framing their experience as an injustice in having been robbed of a “normal” sibling and “normal” family experiences (Dosch Brown 2011, 10). For example, in speaking of a non-autistic boy named Andrew and his autistic older brother, Davey, the narrator of the program suggests that Andrew has been denied the right to normalcy: “All six-year-old Andrew wants is a typical afternoon, playing in his backyard, but his twelve-year-old brother, Davey, is anything but typical” (Dosch Brown 2011, 10).

In this rendering, the program picks up on the trope of the disabled person as morally abject and threatening. The autistic sibling, by his very nature, is the purveyor of suffering for the entire family. The implication of culpability becomes clear in the assertion of one therapist who says of nondisabled siblings, “They’ve lost their brother and sister, they don’t have the brother and sister they thought they’d have. They’re the ones that bear the brunt of so much. They bear the pain, the agony, the sorrow, the anger, the despair, and the isolation” (Dosch Brown 2011, 11). The disabled child has somehow replaced the “normal” sibling that everyone needs and deserves and, as such, is stigmatized as the cause of lifelong pain.

In other representations, the imperative toward normalcy is not quite so explicit. Such representations engender fear and loathing toward all that is non-normative by projecting it onto disabled bodies. In The Enfreakment of Photography, David Hevey discusses this objectification of disabled people by analyzing the treatment of disability in high-quality photography. In The Family of Man, he notes, a disabled person appears as a symbol of tragedy and courage set against a backdrop of a normative world of progress and wholeness (Hevey 2010, 509). Moreover, in diane arbus, the figures of dwarves, a giant, and people with intellectual disabilities symbolize the photographer’s sense of the fragmentation and disorder of the society at large and within herself (Hevey 2010, 509-515). Finally, in Gary Winogrand’s Figments from the Real World, disabled people represent instability, disharmony, and horror (Hevey 2010, 514-516). As Hevey asserts, disabled people in each of these works represent meaning in the photographer’s narrative, but do not create meaning themselves, nor do they represent their own concerns. They are symbols, and each representation casts disabled people as strange, disturbing, and segregated from “normal” people (Hevey 2010, 518-520).

Other forms of representation support the concept of normalcy by inviting nondisabled people to stare at disabled bodies and then casting those bodies according to the contradictory assumptions embedded in our culture. In “The Politics of Staring,” Rosemarie Garland-Thomson uses a four-part taxonomy to describe the ways in which popular photography represents disabled people: the wondrous, the sentimental, the exotic, and the realistic. The first three categories reflect the contradictory representations I have outlined; the fourth attempts to remove the need for contradictory extremes by hiding disability altogether. The wondrous elicits admiration or astonishment by framing a disabled person’s activity as extraordinary (Garland-Thomson 2002, 59-61); this approach tends to reify the idea of disabled people as heroic super crips. As a counterpoint, the sentimental seeks to engender pity for what is assumed to be the suffering of disabled people (Garland-Thomson 2002, 63); this framing tends to reinforce the notion of disabled people as both asexual and helpless (with the implication that one must help disabled people in order to keep them from becoming bitter crips). The exotic sensationalizes disabled people as disturbing and alien (Garland-Thomson 2002, 69), and tends to cast them as hypersexual and threatening, while the realistic goes to the other extreme, hiding visible indicators of disability in order to portray disabled people as “normal” and just like everyone else (Garland-Thomson 2002, 69). The fact that removing contradiction with regard to disability can only be accomplished by erasing disability from view is an indicator of how deeply these extreme versions of disability are woven into the cultural fabric.

A prime example of the kind of representation that make paradoxical use of the wondrous to elicit gawking admiration at disabled people doing ordinary things, and the exotic to elicit moral and sexual revulsion at who they are, is the 1932 movie Freaks. The film features a cast of people with various disabilities, and has a number of scenes in which physically disabled people carry out ordinary tasks using their uncommon bodies; for example, in one scene, Prince Randian, a man without limbs, lights a cigarette. However, the film was also considered scandalous when it was released (Haller 2002, 167-168), because central to the film is a sexual relationship between a Hans (a man of short stature) and Venus (a tall, conventionally beautiful able-bodied woman) — a relationship that the filmmakers invited people to see as deviant and perverse (Haller 2002, 169). In the latter part of the film, when it becomes clear that Venus has married Hans only for his money and has attempted to poison him, all of the other “freaks” ultimately band together to take revenge by killing Venus’ able-bodied lover and mutilating Venus, turning her into a “freak” herself (Haller 2002, 170). The linking of disability with both sexual and moral deviance could not be any clearer.

Interestingly enough, other visual representations maintain the strictures of normalcy by using fear of disability in an entirely different fashion. Rather than posing disabled people as being morally or sexually deviant, these representations cast them as having a special sort of spiritual power. One egregious example of this form of representation is the Muscular Dystrophy Association Telethon, which was hosted by Jerry Lewis every Labor Day weekend from 1966 through 2010. As Beth Haller points out, Lewis’ approach was to portray disabled people as suffering children by referring to even disabled adults as his “kids” (Haller 2010, 142). Then, he evoked fear in the audience that such suffering could happen to their children (Haller 2010, 144), and represented the entire process of fundraising as a spiritual undertaking with disabled people of non-normative spiritual abilities (Haller 2010, 142). His use of pity was based on the fear of disability, and he used both visual and verbal means to accomplish the task of pleading for his “kids” to be returned to “normalcy.”

Lewis’ use of visual staging was masterful. As Haller notes, in every telecast, when interviewing disabled people, he is standing, a paternalistic authority figure who hugs them and pats them on the head as though he were a loving parent (Haller 2010, 142-143). Once Lewis establishes even adults as children, he uses both visual and verbal means to represent them as being of higher spiritual standing than able-bodied people. He always controls the microphone so that others have to look up to him in an attitude reminiscent of religious awe (Haller 2010, 143), and he refers to people with muscular dystrophy as bringing him luck and giving him something to hold onto as he goes through his daily life (Haller 2010, 143-144). Of course, the point is not to respect disabled people as they are, but to create distance from them as non-normative and to elicit contributions in order to bring them into the fold of normalcy.

Apart from the telethon, perhaps the most destructive way in which popular media uses disabled bodies to reinforce the strictures of normalcy is by speaking of disabled people as unproductive burdens who threaten the moral and economic fabric of the nation. In so doing, the media reinforces the idea that to be “normal” is to be an able-bodied worker. Over the past decade, the scapegoating of disabled people as economic burdens has escalated in the popular media, as evidenced by the 2010 report Bad News for Disabled People: How the Newspapers Are Reporting Disability, published by the Strathclyde Centre for Disability Research and the Glasgow Media Unit at the University of Glasgow. In this report, the contributors analyze reporting on disability in five newspapers in the UK for the period 2010-2011, and find that, in representing disabled people as morally corrupt burdens on society, newspaper stories use three different approaches: disabled people are spoken of as a drain on the economy and, in some cases, as responsible for Britain’s economic problems (Briant et al. 2010, 9); fraudulent disability claims as represented as far more common than they actually are (Briant et al. 2010, 10); and the claimants are attacked as promiscuous, lazy, and irresponsible (Briant et al. 2010, 11). Certainly, the credo of nineteenth-century eugenicists who believed, in Davis’ words, that if “individual citizens are not fit… then the national body will not be fit” resonates to the present day (Davis 2010, 10).

Wide-Ranging Effects: The Impact of Stigmatizing Representations on Disabled People

The impact on disabled people of being stigmatized in so many ways cannot be underestimated. Its internalized effects include loss of pride and self-esteem (Murphy 1990, 90), often descending into self-hatred (Campbell 2008, 155; Link et al. 2001, 2; Link and Phelan 2006, 528) and a threatened sense of one’s social identity (Major and O’Brien, 2005, 397-399). The social isolation that stigmatized people experience exacerbates these threats to one’s sense of self, and puts disabled people at risk of suicide (Murphy 1990, 64). Moreover, stigmatized people live with a great deal of stress and fear about the consequences of their stigmatized status (Link and Phelan 2006, 528), and without the ready access to the rights and privileges that nonstigmatized people take for granted; as Major and O’Brien point out, stigma is associated with “low social status, poverty, and reduced access to housing, education, and jobs” (Major and O’Brien 2005, 394). As a result of anxiety, stress, and socio-economic marginalization, stigmatized people tend to suffer from a host of health problems (Link and Phelan 2006, 528-529), including “depression, hypertension, coronary heart disease, and stroke” (Major and O’Brien 2005, 409).

But the danger of stigma is not simply to one’s sense of self and physical health. There is a far more dangerous threat: active violence. Stigmatized as having lives of lesser worth, disabled people endure, first of all, the psychic violence of those who believe they would be better off dead. Chief among those is Peter Singer, the Ira W. DeCamp Professor of Bioethics at Princeton, who believes that parents should have the option of having severely disabled infants euthanized, and who has said that it should be legal “to kill, at any age, individuals with cognitive impairments so severe that he doesn’t consider them ‘persons’” (Johnson 2010, 573). Of course, the violence goes beyond the psychological trauma of knowing that one’s life is so devalued that even a bioethics professor believes it should have been terminated long ago; it becomes physical on a widespread scale. As Mark Sherry points out, disabled people suffer a wide variety of violent hate crimes: simple and aggravated assault, intimidation, vandalism, theft, rape, and arson (Sherry 2003, 6). The violence can be lethal. Sometimes, death occurs as a result of outright abuse and murder (Light 2003, 10, 13-14; Quarmby 2008, 7). Sometimes, it occurs though a denial of care for conditions that would ordinarily be treated in nondisabled people (Light 2003, 11-12, 17). Bill Peace, a wheelchair user of 30 years, writes about a doctor offering him assisted suicide by giving him the choice of refusing antibiotics for a life-threatening infection — the doctor’s assumption being that death was preferable to disability (Peace 2012, 1).

Like all forms of stigma, disability stigma works to keep its targets in a position of powerlessness and exclusion. Cultural representations reinforce and perpetuate stigma, casting disabled people as helpless, tragic, suffering victims who reside only at the extremes of human behavior and experience. Because people with disabilities, like all people, are far more complex than such black-and-white renderings suggest, any attempt to change cultural representations must address the oversimplifications that abound. How do we create that kind of change? As disabled people, we must continue, whenever we are able, to talk about the realities of our lives. This degree of openness is difficult, given the sheer weight and shaming nature of stigma, but in the final analysis, our self-esteem, our health, and our lives may depend upon it.

References

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Barnes, Colin. “A Brief History of Discrimination and Disabled People.” In The Disability Studies Reader, edited by Lennard J. Davis, 20-32. New York, NY: Routledge, 2010.

Baxter, Peter. “Disability and Sexuality.” Developmental Medicine and Child Neurology 50, no. 8 (August 2008): 563. doi: 10.1111/j.1469-8749.2008.03039.x.

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 the Glasgow Media Unit, University of Glasgow, 2010.

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.

Brown, Rebecca Dosch. “’Screw normal’: Resisting the myth of normal by questioning media’s depiction of people with autism and their families.” Minnesota Symposium in Disability Studies (2011). http://blog.lib.umn.edu/gara0030/iggds/Screw%20Normal_FINAL_Dosch%20Brown.pdf.

Campbell, Fiona A. Kumari. “Exploring internalized ableism using critical race theory.” Disability & Society 23, no. 2 (March 2008): 151-162. doi: 10.1080/09687590701841190.

Dahl, Marilyn. “The Role of the Media in Promoting Images of Disability – Disability as Metaphor: The Evil Crip.” Canadian Journal of Communication 18, no. 1 (1993): 1-3. http://www.cjc-online.ca/index.php/journal/article/viewArticle/718/624.

Davis, Lennard J. “Bodies of Difference: Politics, Disability and Representation.” In Disability Studies: Enabling the Humanities, edited by Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, 100-106. New York, NY: Modern Language Association of America, 2002.

Davis, Lennard J. “Constructing Normalcy.” In The Disability Studies Reader, edited by Lennard J. Davis, 3-19. New York, NY: Routledge, 2010.

Fine, Michelle and Adrienne Asch. “Disability Beyond Stigma: Social Interaction, Discrimination, and Activism.” Journal of Social Issues 44, no. 1 (Spring 1988): 3-21. doi: 10.1111/j.1540-4560.1988.tb02045.x.

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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.

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Goffman, Erving. Stigma: Notes on the Management of Spoiled Identity. New York, NY: Simon and Schuster, 1963.

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© 2012 by Rachel Cohen-Rottenberg

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Iconography And Suffering
Jul 11th, 2012 by Rachel Cohen-Rottenberg

A few months ago, I discovered the writing of feminist author and essayist Nancy Mairs, a woman who has lived with multiple sclerosis for over 40 years. I stumbled across her essay, “Sex and Death and the Crippled Body: A Meditation,” and found a passage that resonated with me in ways I am only able to begin to articulate now:

Perhaps because I have embraced a faith with crucifixion at its heart, I do not consider suffering an aberration or an outrage to be eliminated at any cost, even the cost of my life. It strikes me as an element intrinsic to the human condition. I don’t like it. I’m not asked to like it. I must simply endure in order to learn from it. Those who leap forward to offer me aid in ending it, though they may do so out of the greatest compassion, seek to deny me the fullness of experience I believe I am meant to have. (Mairs 2002, 169)

I want to preface my comments by noting that I am Jewish, and that the crucifixion is not at the heart of my own theology — although certainly, thousands of Jews (including Jesus) were crucified by the Romans, and the question of suffering has always played a large part in Jewish history and consciousness. I feel the need to note the ground on which I stand in order to guard against any notion that I might be about to engage in proselytizing (perish the thought, truly), and in order to provide the context for the depth of my response to the passage.

It’s difficult and painful for me to write about my response. I have been feeling, of late, a great deal of emotional and spiritual anguish, largely the result of profound losses I’ve experienced over the course of my life. Perhaps because of these losses, I have become the sort of person who generally looks to power through difficulty; I might cry and rage over my pain, but in the final analysis, I rebel against the notion of it, and if I accept it at all, I try to put it to good use. I was born with a healthy sense of outrage at the suffering that human beings cause one another, and growing up in Jewish culture, I was taught to heal the world of that kind of suffering. In all my years as a practicing Jew, I have lived by the faith that my purpose is to work to end suffering. I have rarely felt the ability or the inclination to simply accept it as a given.

But I recognize that as I age, and as I consider my status in society as a middle-aged, disabled woman, there is a great deal of suffering that won’t be ameliorated in my lifetime, including my own. The social exclusion, the stigmatization, the lack of understanding, and the loneliness that attach to both aging and disability will not go away while I am still living and breathing on this planet. In many ways, for me, this is the most difficult part of aging and disability: the realization that progress is slower than a snail, if it exists at all, and that the position of elderly and disabled people in my society will not change for several generations hence. So I am left with how to deal with what I have been given.

Over the winter, I spent two months in California in order to visit my kid, a freshman at UC Santa Cruz. One day, I was feeling particularly low and, given that there was no synagogue in town, I walked up to a UCC church and went into the sanctuary, looking for some peace. The centerpiece of the sanctuary was a large cross — not the kind that hangs on the wall, but the kind that is rooted to the floor and literally large enough that one could imagine a person hanging on it. It was directly in front of me. In fact, it would have been impossible to sit anywhere in the sanctuary and not feel its hovering presence.

I sat in the sanctuary crying, looking at the cross, and for the first time, I realized why I had always felt a pull toward Christianity, even though so much of the theology does not work for me: it was the visual symbol of suffering. We don’t do visual symbols of suffering in Judaism. We don’t do a lot of visuals at all, because our notion of God is that God is beyond the visual, beyond the verbal, beyond symbol, beyond thought, beyond reason. In fact, we worry about visual symbols moving into the realm of idolatry, and we proceed very carefully with them. In Torah, as a fail-safe against idolatry, we don’t even have a pronounceable name for God; when I read Torah and see the letters Yud-Hey-Vav-Hey, the Unpronounceable Name, I feel as though I’m ceaselessly reminded that all my thoughts are only thoughts, only approximations, and I feel myself falling headlong into the mystery of all being. It’s humbling, and for me, it’s necessary.

But I am also a visual person deeply held by the tactile reality of human life and deeply entranced by the metaphors that flow from it. And as I sat in front of that cross, I realized that it was grounding me, because it was a visual representation of suffering — not of someone else’s suffering, but of my own. I am certainly not likening my own suffering to crucifixion — not at all — but noting that, for me, the crucifixion became a symbol of all human suffering, particularly unjust human suffering. Suddenly, I felt, I was no longer alone in a world that insists that I deal with suffering by pretending to be happy, or by being perpetually angry, or by trying to outrun it in the hopes of a brighter day. Suddenly, it was shared. Suddenly, it was the pain of what human beings go through, all the time, every day. It was all there, all around me, because I was looking at a visual symbol. The representation was crucial, and let me tell you that, as a Jew, that made me enormously uncomfortable.

And so I wondered: Why is this visual symbol in the middle of a place in which to find peace? Up to that point, I’d always rather smugly felt that Christianity was obsessed with suffering; otherwise, why put a torture device up on the wall? It had always seemed a bit perverse. But then I thought about what my first rabbi had said to me about God — that God is a force who cares for us and loves us, and that knowledge of this loving God was the gift of the Jewish people to anyone who sought it. And I realized that in Christian thought, that cross is about the love of God for the world. Now, as a Jew, I don’t believe that Jesus was God, or that Jesus had to die to save the world. But without accepting the theology of Christianity, I felt the message of Christianity very clearly at that moment: profound suffering and profound love can coexist as one. The knowledge that at the place of the greatest suffering is the greatest love hit me like a force of nature. I didn’t quite know what to do with it.

So when I happened upon Nancy Mairs’ words about suffering and the crucifixion, it all came back to me. Truth be told, I still don’t know quite what to do with it. Do I like suffering? No. Does it piss me off? Yes. Can I accept it? I’m not sure. Can I endure it? I have so far. Can I find the larger love that lives inside it? I hope so.

Sources

Mairs, Nancy. “Sex and Death and the Crippled Body: A Meditation.” In Disability Studies: Enabling the Humanities, edited by Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, 156-170. New York, NY: Modern Language Association of America, 2002.

© 2012 by Rachel Cohen-Rottenberg

Evading Responsibility by Making Science the Solution
Jul 6th, 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.

Sources

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

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