Study Guide

Disability Studies Basics

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  • Beginnings

    Birth of a Theory

    Disability studies, as an academic discipline, really isn't that old, probably not much older than many of you who are reading this. In fact, disability studies as a field of its own only began to emerge in the 1980s and 1990s, with works like Rosemarie Garland Thomson's Extraordinary Bodies (1996), Lennard Davis' The Disability Studies Reader (1997), James I. Charlton's Nothing About Us Without Us (1998), and James C. Wilson's and Cynthia Lewiecki-Wilson's Embodied Rhetorics: Disability in Language and Culture (2001).

    Though the discipline may still be in its infancy, the themes it tackles are not. Indeed, we've been talking about, struggling with, and obsessing over our bodies and the bodies of others for almost as long as there have been bodies to freak out over—and certainly for as long as we've had the language to cuss, criticize, and cajole these bodies of ours.

    Disability theorists, such as G. Thomas Couser, suggest that there are three major periods that define how bodies are viewed and how they are treated. These periods are the symbolic (which, according to this model prevailed in the Ancient World and into the Middle Ages and Renaissance); the medical (which emerged in the Enlightenment era, took its modern form in the Victorian, and continued on into the first half of the 20th century); and the social (which coincides with the emergence of the disability rights movement and disability studies in the late 20th century).

    "So what?" you ask. "Don't we have enough to worry about in the here and the now without wasting time on the past?"

    But patience, grasshopper, the answers you seek are at hand.

    You see, while it may be that certain ways of perceiving the body are more common in one era than another, the "old" ways never go away entirely. They're always still there, shaping the way we act and think and perceive our world.

    So let's look a little bit more closely at these three stages—which aren't really stages at all since they're all still alive and well and living next door!—and see how these relate to disability studies today.

    Take a deep breath, Shmoopers. We're goin' in.

    The Symbolic

    Don't Make God/the Gods/the Universe Mad or Your Kid'll Have Five Heads and a Tail

    Well, it's not too hard to figure out when we as a species began to look at human bodies as symbolic, as the living em bodiment of the society we live in, because the practice is really as old as civilization itself. We're talking about stuff that's been going on for millennia here, folks. That's a lot of birthday candles.

    An example? Well, the ancient Greeks, as always, are a great place to start. They carved statues of ripped dudes and hot babes as a sign not only of physical but also of moral perfection. Yup, the hotter you were, the better the person you were.

    Flagellate, Mate

    Fast-forward to the Middle Ages, when the disabled were seen variously as signs of God's wonder—his ability to defy the "laws" of nature—and as tokens of his wrath. The birth of a disabled child could be read as a sign that the society had fallen out of God's good grace and would be chastised for disobedience.

    The connections between illness and Divine Judgment were especially strong during the era of the Black Plague, which was seen by many as a scourge sent by God to punish humanity for its sins.

    So common was this belief in the link between sickness and sin that in the mid-14th century, religious sects known as the flagellants rose to prominence. In their efforts to rid Europe of the Black Death, the flagellants would beat themselves with whips for hours and days on end, punishing their own bodies in an attempt to atone for the sins of the world and to encourage God to end the scourge of the Black Plague. Now there's a way to spend a Saturday night.

    God is a Funny Dude

    In the Renaissance and Enlightenment eras, somewhat happier times prevailed (though it was certainly still no Mardi Gras). And, as always, the understanding of sick and disabled bodies shifted to reflect the changing times.

    This is the era in which the understanding of the disabled body really began to assume the role of "prodigy" that Rosemarie Garland-Thomson speaks of. A prodigy, in this sense, is something that is both rare and wonderful. It inspires curiosity and amazement; it is a thing more to be marveled at than to be feared.

    And, for the good folks of the Renaissance, these wondrous/wonderful bodies were thought to manifest the creativity and humor of God—not to mention the amazing variety of the natural world.

    The Medical Era

    Let Me Hear Your Body (Politic) Talk

    Okay. Okay. You've caught us, brilliant Shmoopers! We've already spent the last gajillion pages talking about medicine and the medical model, so what's new to learn here? Well, Grasshopper, there's lots actually.

    You see, we have to remember that the way we look at the body is, first and foremost, symbolic—even in these supposedly scientific (language geeks would call it "empirical") times—before we start to really think about how the medical era operates (yup, another pun. Bah-dup-pum).

    So, before we put on our scrubs and break out our stethoscopes, let's remember that, even in the medical era, the way that we look at bodies is what? Say it with us: symbolic. Yeah. That's how we roll.

    Disability theorists usually trace the start of the medical era back to the Enlightenment and, especially, to a group of kind of well-to-do European dudes called the "natural philosophers" (and it was almost always dudes.)

    Anyhow, the natural philosophers were all up in the study of the natural world (duh), especially through the use of this new-fangled thing they called the "scientific method." They believed that all of the secrets of the created world and of God's intentions for that world would be revealed if we just studied it objectively and deeply.

    And what's a good way to start to understand the natural world? Why, to look at those creatures that seem to "violate" natural laws as we know them (but of course!). So, these natural philosophers—everyone from your scientists to your philosophers to your average Enlightenment Joe science nerd—went all stalkerazzi over anything funky or freaky. Triple word score if that funky or freaky thing came from some super far away place, like Africa or South America or Australia.

    So hardcore were these natural philosophers about their science geekiosity, they would amass these massive collections of "freakery," oddities, and other weirdly cool specimens from all over the world, which they would display (usually in their own homes—how super creepy is that?) in things called "cabinets of curiosities."

    Still with us? We good? Okay…forward, Shmoopers, into the 19th century!

    Calling Dr. Kildare; Dr. Kill-Dare?

    And here we find the medical model starting to emerge, the one that gives so many social-constructivist disability theorists the heebie-jeebies. You see, the Enlightenment idea that the "freaks" of the natural world would help us to unlock the secrets of nature, of ourselves, and of the universe as a whole (no, that's not asking too much, is it?) began to crystallize in the 19th century around the idea that clinical medicine would become the key to detecting illness within the body and rooting it out.

    And when we root out disease, ladies and gentlemen, boys and girls, what do we have? Why, a perfectly functioning, perfectly glorious human being, of course! And when we have a whole nation of these perfectly functioning, perfectly glorious human beings—made possible through the healing hands of your friendly neighborhood doctor (also a genius unlike any other, naturally)—then what do we have? Why, a perfectly functioning, perfectly glorious society—of course!

    And so emerges the modern medical model that shapes so much of how we understand, talk about, and, yes, tell the stories of our bodies today.

    Foucault and the Modern Medical Model

    To understand this modern medical model and how it shapes the way we speak of the body, we can turn to one dude nobody can seem to get away from if you're talking theory: the in/famous Michel Foucault.

    Now, Foucault was awesome at blowing to smithereens pretty much every institution we seem to rely on or believe in in the modern world, from the church to the military to the penal system to the government as a whole.

    But when it comes to disability studies, we might think of Foucault's Birth of the Clinic kind of like Green Lantern's ring: it's a powerful but dangerous weapon because it changes the way that we think about bodies—and those purported to heal them.

    Basically, Foucault argues that clinical medicine arose in its modern form not so much to help bodies as to regulate them (Foucault would call this "discipline"—and no, we don't mean the Fifty Shades of Grey thing; well, not quite).

    Clinical medicine doesn't just teach us what bodies should look like and how they should function. No, clinical medicine insists upon these standards and then it punishes those bodies that don't, can't, or won't meet those standards.

    Disability studies owes a lot to the cheery (not!) writings of our own Monsieur Foucault (French beret not included).

    The reason that clinical medicine has such a role to play in regulating bodies (or, if you want to sound like a real smarty-pants, you can say it as Foucault would—the creation of "docile" bodies) is because clinical medicine is, according to Foucault, one of the most important of the power/knowledge systems at play in our modern world.

    Say what? Well, a modern power/knowledge system, Foucault tells us, is an institution that has become such an integral component in our modern world that it shapes the way we perceive our world, especially through the ways that we gather, use, and communicate information—or, in other words, the ways that we define and deploy "knowledge."

    But here's where it gets sticky because, for Foucault, these knowledge systems (or, if you want a really cool Scrabble word, you could say these "epistemes") are really little more than techniques for maintaining modern power structures.

    So what passes for credible information, for knowledge valuable enough to shape our understanding of and behavior in our modern world, is just another means for maintaining the status quo, for ensuring that those who have power keep it and those who don't have power never get it.

    Scary, much?

    Disability as "Error"

    So, given all that Foucault has to say about the role of the modern "clinic" in shaping bodies, it's not a big leap from there to the medical model that so much of disability studies seems to be buzzing about.

    See, if clinical medicine is one of our modern world's most important power/knowledge systems, then the way that clinical medicine perceives and behaves toward disabled bodies is nothing more than an act of power, a means to maintain the status quo.

    Roll with us for a minute—we're getting there. See, many disability theorists see the medical model as shaping not only impaired or disabled bodies but also those bodies that are so-called "normal" by using its treatment of sick, injured, and deformed bodies to teach those with healthy bodies how to maintain that health—along with the consequences of not doing so.

    The Eugenics Era

    If You Want to be Happy for the Rest of Your Life, You Better Make a Pretty Woman Your Wife

    The modern eugenics movement sought to create a more perfect society by influencing reproduction, encouraging the "best" of us to reproduce and discouraging—and sometimes forbidding—those "unfit" among us from having babies. This led to the forced sterilization programs that continued into the 1970s.

    As Shelley Tremain tells us, this period of restricting who could and couldn't have children is just one example of the role of clinical medicine in regulating bodies—all bodies. It all goes back to the cure/cover/kill method: if a body that deviates from a stated "norm" can't be "cured" by modern medical science—and all those wonder drugs, miracle diets, and anti-aging potions it produces—then it must be "covered" (i.e., hidden away in the home, the hospital, or the institution) and/or "killed," sometimes by not allowing that body to reproduce.

    This is all, for Tremain, a means for clinical medicine to maintain its power by deciding which bodies are valuable and which are not—and by ensuring that we all fall in line and do what we are supposed to do to make sure that our bodies are among those that count, that are worthy, both in appearance and in functioning.

    But, to prove your worth in our modern medicalized culture, you can't rock the boat. You can't upset the "norm"; in fact, you've got to always be whipping your body into shape, chasing that ideal image of god-/goddess-like perfection, the "normate."

    And what happens if you can't diet, exercise, pluck, and suck your way to perfection? Well, that's a problem.

    Disability as "Problem"

    Quick! Call 911

    Disability theorists argue that our modern medicalized culture, with its oceans of pills, potions, and lotions "guaranteed" to ensure health and beauty at any age gives rise to an environment in which the sick are often blamed for their conditions and not being conscientious enough about their health. For example, an injured person can be blamed for not being careful enough to avoid getting hurt, or a deformed person can be blamed for not being quick enough to have his/her deformity "fixed."

    This is because, as we've said, non-normative bodies scare the living daylights out of us. And so, to cope with that fear, we start to look at these bodies as "problems." This is because problems, in a perfect world, always have solutions. Problems can be solved. And this is why leading disability scholar Tanya Titchkosky has proclaimed, "Problem is the definition of disability" (198).

    Phew. That's dark.

    And so, to resolve these problems in our modern world, we medicate, we operate, we rehabilitate, and we re-educate. Another prominent theorist, Simi Linton, argues that this drive to "fix" the problem of disability actually "strengthens the control that the rehabilitation/medical industry and the special education system have over disabled people" (Titchkosky 199).

    In other words, if we see non-normative bodies as failing to live up to our modern social standards, they become a problem for these industries to solve.

    But what if all these "fixes" really aren't what's best for the individual person? What if it's all about what society requires, just to make the person "seem" more normal? That's the point where disability studies gets its panties in a twist.

    Rosemarie Garland-Thomson (oh, RGT, we love you so!) uses the example of conjoined twins and intersexed babies (i.e., babies having both male and female genitalia or those with ambiguous genitalia) as examples of what happens in the attempt to "fix" such problems. She writes,

    So threatening to the order of things is the natural embodiment of conjoined twins and intersexed people that they are almost always surgically normalized through amputation and mutilation immediately after birth. (Disability Studies Reader 341)

    In other words, conjoined twins and intersexed babies are simply another one of the many forms the human body can come in. There's nothing diseased or dangerous in most of these cases. Almost all intersexed persons and most conjoined twins can live long, healthy, and happy lives without surgery.

    So why do we subject newborn babies to these terrible, sometimes life-threatening, surgeries? Simple. Because these bodies blow to pieces everything we think we know about what it means to be a person. Again, our brilliant Rosemarie G-T gives us the answer:

    Conjoined twins contradict our notion of the individual as discrete and autonomous […] Intersexed infants challenge our insistence that biological gender is unequivocally binary. (ibid.)

    In other words, in our "rational" modern world, we like to believe that each person is an individual, is unique and independent. Sounds pretty logical, huh? But then along comes conjoined twins and they put the kibosh on that idea. Not everybody is one person. Sometimes, we're two.

    And we like to think that we're all either boys or girls. And then along comes an intersexed infant and all our ideas of what it means to be male or female go out the window. Suddenly, we're not always either boys or we're girls. Sometimes we're both.


    And so, we cut. And we cut. And, sometimes, we cut some more. And in cases like these, it's not because it's for the good of the baby. One conjoined twin is often allowed to die in the separation process so that the other can live as a separate (read: normal) person. And many intersexed infants who undergo gender assignment surgery will experience life-long complications that they may never have experienced without surgery.

    So, we aggressively "fix" bodies that threaten our ideas about ourselves, whether they like it or not. Why? Because if these bodies live, thrive, love, and are loved, then where does that leave us? Who are we if all that we understand about what it means to be a "person" falls away? And what happens if we're no longer chasing the image of the normal (normate)?

    Yikes. Things get pretty wild when we think about how weird, how unexpected, and how varied our bodies can be. Now what happens when we start to accept them all?

    The Social Model

    Postmodern/Discursive Bodies

    Enter postmodernism and along with it the social model of disability studies. As we've already seen, the social model argues that disability is not a condition of the individual person, but arises from our own cultural ideas about the way the human body should look and function.

    Thus, as we know, those social model theorists who subscribe to the impairment/disability binary argue that the impairment (i.e., the disease, the injury, or the deformity) is not the disability because by itself it doesn't necessarily limit or prohibit the individual from doing what s/he wants to do in this world.

    It is only when the impairment meets an environment that is not built for the way that body and/or mind functions that the disability arises. For example, if a person is on the autism spectrum and cannot use language, but has other means of communicating, then that is an impairment. But if that person attends a meeting in which public speaking is required, then the meeting, by not providing an alternative means for the autistic person to communicate, becomes disabling.

    Non-Normative Bodies in a Postmodern World

    Not only this, but postmodern theory, with its emphasis on the role of language in shaping perception as well as identity, has helped disability theorists begin to think outside of the medical model.

    Basically, postmodernist-inspired disability theorists, such as Tom Shakespeare and Marian Corker in their Disability/Postmodernity: Embodying Disability, have started to think about the impact of the language we use in our medicalized society. For these theorists, the language of medicine powerfully shapes the way we perceive impairment. And, for postmodernists, perception is the only reality.

    We can see this in the idea of the "sick role," in which a patient, once diagnosed, begins to live up to and according to that diagnosis unless and until s/he is pronounced "cured" by an outside authority (yup, the doctor).

    But postmodern theory offers an interesting way out of the sick role, and of the language of our medicalized modernity in general, because doctors aren't the only ones who can speak.

    Disability studies scholars like G. Thomas Couser have started to pay a lot of attention to the power of patients' own narratives in shaping their sense of self, their attitudes toward and understanding of their impairments, and the way that they use their stories to develop their own places in the world.

    So, while the medical model positions disability in the individual body of the patient, describing it as a "problem" to be fixed through medical intervention, social models argue that disability is in fact an environmental problem originating in false perceptions of how "normal" bodies should look and function.

    Not only that, but drawing from postmodern theory, social models of disability argue that persons with "non-normative" bodies can, basically, "relanguage" their conditions by taking control of their own stories and insisting that they—not the doctors, not the courts, not society as a whole—get to define their impairment—and themselves.

    Of course, it's not always that simple. Yup, there's always a catch. And as Tom Shakespeare, who co-wrote and co-edited Disability/Postmodernity, reminds us, it's way too easy to fall into the Tarzan speak of "social model good; medical model bad" trap when the reality is super complicated.

    Shakespeare reminds us that illness, injury, and deformity are not just social constructs, ideas rooted in other people's perceptions. No, these conditions are physical realities of the body and, especially when they appear in the form of chronic and progressive diseases, they don't just go away when environmental barriers or social prejudices are removed.

    Not only that, but anyone who thinks that the world can be built to accommodate every kind of bodily variation, illness, injury, or deformity is a teensy bit unrealistic.

    Because, the truth is, there will always be disease and debility. Oh, and death and taxes.

    So, the next stage for disability studies? Well, this is where the union of disability studies and literary theory becomes so very important. Because to understand "disability" and to begin to envision, and then create, a world of equality for all bodies, which is the theory's ultimate goal, we must look—and look, and look some more—at how our words and our stories shape our understanding of our bodies, how we live in them, and how we love them.

    Because we can only throw away the old stories when we can replace them with new ones.

    Disability Studies, meet Literary Theory; Literary Theory, meet Disability Studies. And, as disability theorist Simi Linton would say: what culture has brought together, let no one ever again tear asunder.

  • Big Players

    Rosemarie Garland-Thomson

    Bringing Freakery Back!

    Well, if you're going to talk disability studies, you can't go wrong by starting with its rock star, Rosemarie Garland-Thomson.

    You see, good old RGT wrote two books in the 1990s that set the world of disability studies on fire. Perhaps the most important is Extraordinary Bodies, which was the first book to really look at disability as a cultural construct (an idea used in books, movies, the visual arts, etc.) and as a way to define how Western civilization sees itself. Oh, and, above all, how it draws the boundaries of community by drawing lines between "normal" and "abnormal" bodies.

    RGT shows us in Extraordinary Bodies and Freakery: Cultural Spectacles of the Extraordinary Body that the visual display of non-normative bodies has been an important tool in Western cultures, because it establishes communities by distinguishing those who belong from those who don't.

    RGT sees this not only in the form of the cabinets of curiosities, but also in the freak shows that were so popular in Europe and the US from the 18th to the early-20th centuries.

    Since the 1990s, RGT has focused a lot of her attention on the means through which disability operates as a visual construct, with the disabled person choosing or being required to submit him/herself to a sort of visible inspection.

    For RGT, the spectacle of disability may be in the form of the average Joe seeing someone on the street who doesn't look or act "quite right" and trying to diagnose, or to figure out, what might be "wrong" with that person.

    Or, it might occur in the more socially approved form of a doctor's office visit, where the patient submits him/herself to the visual inspection of the doctor. Indeed, RGT's 2009 book, Staring: How We Look, argues that this instinct to stare at bodies and to try to define them based on how they look is a natural human impulse that shapes the way we perceive, understand, and react toward disability.

    Not only this, but RGT also links the examination of non-normative bodies in the doctor's office to the freak shows of 200 years ago, and even to the idea of the disabled body as a of sign and wonder in the Ancient world and the Middle Ages. For RGT it's all just about the human instinct to stare and then to define in a new form.

    Michel Foucault

    The Doctor Will See You Now

    We can't think about the visibility of the non-normative body (especially when it comes to the doctor's office) without thinking about Michel Foucault, our not-so-cheery guide through our modern world and the way our world "constructs" our ideas about the human body.

    The Birth of the Clinic is just one of a sea of books Foucault has given us to show how modern medicine shapes the way that we feel about—and react toward—our bodies. And these attitudes, he suggests, are primarily geared toward maintaining the status quo, toward ensuring that those who have power keep it… and that those who don't have power won't get any.

    So, for Foucault, the medical examining room becomes one of the many places were bodies are "disciplined" and made "docile," because, through diagnosis, prognosis, and treatment, doctors define how bodies should look and perform. And then, in Foucault's words, they "punish" those who fail to meet those standards by trying to rehabilitate them to come close to the idea of "normal."

    All of this happens, Foucault tells us, so that our modern power/knowledge systems can ensure that modern bodies are pretty much all alike and one body can be exchanged for any other should the first become injured or sick or die.

    After all, our modern systems need a supply of fresh, well-functioning, and interchangeable bodies to keep them going. We have to have militaries, governments, and workforces that constantly renew themselves, year after year, decade after decade, and century after century.

    And we can only do that if our bodies are "docile" (read: quiet and boring), if they don't look or function any differently from the others. If they do what they're supposed to when they're supposed to do it. If they all fall in line.

    Lennard Davis

    Not Just Your Average Joe, er, Lennard

    Lennard Davis is widely considered one of the founding fathers of disability studies. He's co-writer and editor of maybe the first and most important book in the field, The Disability Studies Reader (1997). According to Davis, our modern understanding of the body, and in particular of the disabled body, really began to take shape in the mid-19th century with the rise of statistics and of the idea of the "average man" or "l'homme moyen."

    Davis notes that the concept of the "norm" didn't emerge until 1855, as modern statistics began to emerge alongside and as a component of industrialization. The means of statistically analyzing modern populations developed in an effort to identify the physical and moral qualities of the "average" middle-class worker.

    Davis argues that these efforts can be traced most especially to the French statistician Adolphe Quetelet, whose study of the physical, mental, and moral characteristics of the working class gave us the idea of what the "normal" middle class worker should look and be like.

    But, for Davis, Quetelet's concepts of the norm were not quite so innocent. It wasn't just that these numbers helped us to understand what the middle class was like in this era. Nope, these ideas were meant to show us what the middle class must be like. In other words, social statistics weren't used to describe—they were used to compel.

    So, these statistics didn't just say that the middle-class body looks and acts like X, Y, and Z… they also said that any body that doesn't look and act like X, Y, and Z must be abnormal and in need of "fixing." This, for Davis, marks the beginning of our modern idea of disability, of who a "disabled person" really is.

    Shelley Tremain

    Making Foucault at Home in Disability Studies

    Theorists like Shelley Tremain have found a strong parallel between disability studies' interest in the norm and the ideas of Foucault. This is especially true of Davis' focus on the role of modern social statistics because, as Tremain notes, Foucault also relied heavily on the role of "measurement" (including statistical measurement) in shaping how we think about bodies and the ways these bodies are supposed to look and function.

    Tremain uses Foucault's concept of "biopower" to explain how ideas of disability are applied in the modern world. Basically, "biopower" just means that the ways we understand, use, and shape our bodies are a reflection of the power/knowledge structures at work in our culture. And not only do these things reflect these structures, dear Shmoopers, they also perpetuate them.

    Say what? Come again?

    Well, all this really means is that when we determine what "normal" bodies look like and do, we also determine what "normal" society is—and that means that we use our "normal" bodies to keep things rolling along as they are and as they supposedly (but not really) "always" have been.

    So, our "normal" bodies ensure that our schools teach as they have for centuries—for example, by using written and oral language as the primary method for students to learn… even if students have visual or hearing impairments.

    Likewise, our military continues to function as it always has: by using perfectly "normal," perfectly "average" bodies that are uniform (bah-dum-bum!), regular, and interchangeable.

    And medical clinics all work on a diagnostic model that says that anything that deviates from the statistical average is "abnormal" and must be fixed or cured in some way.

    The whole goal of these Foucauldian ideas of biopower, according to Tremain, is just to perpetuate our modern, Western, capitalist society, to use our ideas of and our expectations for our bodies to determine how we think, how we live, how we relate to one another, and even how we work.

    All so that our modern Western culture, with its power/knowledge structures firmly in place, can keep on rollin' the way we roll, Joe.

  • Key Debates

    Lennard Davis vs. The Enlightenment Subject

    Yup, when we start thinkin' about debates in the field, we can't go wrong with looking first to the Godfather of disability studies, the hardest-working man in the theory: Lennard Davis.

    Davis traces the emergence of our current ideas about disability back to the mid-19th century and especially to Adolphe Quetelet's development of modern social statistics. Quetelet's concept of the average man, l'homme moyen, was based all around these statistics and what came to be known as the "bell curve."

    As long as you're within a certain range of the peak of the bell curve (usually within two standard deviations), then you're okay, but anything beyond that and you might as well pitch a tent and charge admission because now you're officially (cue sinister music) abnormal.

    But here's where Davis gets squirrely with this idea of the statistical norm: you see, for Davis, the things that are measured with these social statistics and the ways that they are measured are super biased. They're determined by the assumptions and the values of the people doing the measuring.

    And Quetelet and the other social scientists, physicians, and learned experts of their time were shaped (as we all are) by the ideologies and perceptions of their day. In a time when Europe and the US were undergoing rapid industrialization and a lower- and middle-class workforce was rising to fuel these new industries, what was measured as the characteristics of a "normal" person were primarily the physical, mental, and emotional characteristics that made for a "good" worker. We're all just cogs in a wheel, man.

    For Davis, these ideas are all based on concepts that stem from the Enlightenment period of what it means to be a "person." So, Davis tells us that the Enlightenment period created a model of personhood that extends all the way to the modern day, shaping our perceptions of what it means to be human… without our even stopping to question those perceptions. Pro tip: question everything.

    Lennard Davis' "People:" The Idea of the Autonomous Subject

    This idea of what it means to be a person is the idea of the "autonomous subject." Wha-huh?

    Well, "autonomous" is just a fancy word for "independent." The autonomous subject, accordingly, is someone who is able to act and think as he chooses, as his rational mind tells him to.

    This is where Davis' concept of interdependence comes into play. See, Davis thinks the Enlightenment idea of the autonomous subject is really just a load of hooey, an idea that only seeks to serve the status quo of our modern, industrialized, capitalistic society. The man continues to get us down.

    This is because the autonomous subject idea is built around an assumption that the body is meant to function perfectly, and to be able to carry out the intentions of the rational mind, without any help from the outside. So, the body, in this model, is just an instrument—and a perfectly functioning one at that.

    This all ties back to the idea of the average man, l'homme moyen, because it assumes that the autonomous subject is one who will want, and will always be able to, put his perfectly functioning body to use in productive work and in civic duty.

    In other words, the autonomous subject will independently choose to contribute to the modern workforce in a way that makes him a contributing member of his society, and to perform whatever other duties he chooses to do in order to be a good citizen.

    But—and here's the important part—he will do this, according to the model of the autonomous (independent) subject, without any help from anyone. His perfectly functioning body, the body that makes him "normal" according to statistical averages, means that he can work, build a family, and serve his community and country without any outside assistance.

    The reality, Davis tells us, is that all human beings are dependent on others. The ways that we need others will vary throughout our lifetimes; when we are babies, we are, of course, just crying bundles of dirty diapers in need of changing. As we mature, our needs become more abstract, at least for a time; these are emotional needs, yes, but there are also needs that require us to form relationships with others in order to ensure that our safety is protected, that we have food in our bellies and clothes on our backs. This is why we spend hours on Tinder, have buddies, and work for and with other people to earn our bread.

    Enter Davis' idea of interdependence, which is nothing more, really, than a reminder of how we need one another—and, above all, a reminder that it is okay to need one another. In fact, it's abnormal not to need anyone else… unless you're all alone on a desert island. And shucks, even then you need a volleyball to talk to.

    Simi Linton vs. the "Normal"

    Simi Linton is another one who ain't too stoked about this idea of the "normal." Nope, Simi isn't feeling the whole l'homme moyen (the average man) thing. For her, the first and most important step in understanding disability and gaining equality for the disabled is to accept the "disabled identity," whatever that may mean for each individual person.

    Linton's concern is to resist the cure/cover/kill model—you know, the one that incorporates the disabled person into the medical model and says that if she cannot be cured then she must be hidden away.

    Linton's idea, on the other hand, is all about "letting your freak flag fly," and coming out into public life with all of the weirdness and all of the funkiness of the body unashamedly on display.

    But this ain't the typical kind of "display" usually associated with disability. It's not the "stare" that Rosemarie Garland-Thomson speaks of; it's not the visibility associated with freak shows, cabinets of curiosity, or even with modern, diagnostic medicine.

    Linton's ideas of making disabilities visible are about disabled people living their lives as they choose without hiding from, being embarrassed by, or allowing their disabilities to define them. Get it, Linton!

    This is about disability as an undeniable part of one's identity, but not as the whole of one's identity. It is about accepting disability for what it is and seeing in it neither devil horns nor angel wings—just the reality that human bodies come in all shapes, sizes, and forms.

    Simi Linton vs The Academy

    Another cool thing about Linton is that she argues that disability studies should become an integral part of academic studies. Not just studies in the "applied" sciences, like social work, but in the cultural sciences, such as the humanities. She argues that seeing disability as appropriate only for the applied sciences perpetuates the idea that disability is something to be "fixed" by experts who aren't disabled themselves: the doctor, the psychologist, the social scientist, or the special educator.

    But, according to Linton, if we combine these applied approaches with humanist ones, we can begin to see that disability is a cultural construct, an idea rooted in preconceived notions about how "normal" bodies look and function (not to suggest that illness, injury, and deformity aren't real conditions and experiences of the body, though).

    By using cultural studies, and especially theories of identity formation, we can learn to question our concepts of the normal versus the "abnormal" and then perhaps learn to accept and accommodate non-normative bodies without judging them as "tragic" or "scary" or "unlivable."

    Tom Shakespeare vs. the Social Model

    Shakespeare (and, yup, he's a real life descendant of that Shakespeare) was one of the earliest and most important advocates of the social model of disability, arguing that what we understand by "disability" does really center on some pretty biased notions of what the body should be able to do and how it should do it.

    But Shakespeare also warns us against buying so heavily into the social model that we go a little cray-cray and start blaming clinical medicine on everything. The truth is, Shakespeare reminds us, that clinical medicine does a lot of great work. It's saved most of our hides on more than one occasion.

    So if you start setting up a binary that places the social model in opposition to the medical model (or, in other words, that puts the medical model as the Joker to the social model's Batman), you make enemies out of a lot of really awesome people doing good in the world. And you throw shade on a lot of ideas, technologies, and treatments that could make a lot of people's quality of life way, way better.

    Even worse, you make some people (like those with chronic and progressive illnesses or those with injuries and deformities that could respond to medical treatment) look either like raging hypochondriacs for not seeing their conditions as "social" constructs or like traitors to the "cause" for trying to treat their physical conditions rather than change the social and ideological environments that, in the language of the social model, turn their bodily impairments into disabilities.

    For Shakespeare, though, the only course for disability studies in the future is to stop seeing things as black or white, as either/or. It doesn't have to be either the social model or the medical model. The truth, in the smartypants language of theory, is that disability is a both/and kinda deal: it's both social and medical. It's a reality of the body and of the environment that the body comes up against.

    So the question for Shakespeare becomes: how do we use what is best, most promising, and most effective in our changing world of modern medicine to provide the highest quality of life for persons with impairments… while also creating ideological and physical environments that are just, equitable, and inclusive?

    Michael Bérubé vs. the Modern Eugenics

    If you threw up a little in your mouth at the thought of eugenics, hey, that's pretty appropriate. After all, most people draw a straight line from the eugenics movements of the late-19th and early-20th centuries—celebrated as they were then as the savior of the human race—all the way up to Hitler's "selective breeding" (and extermination) programs and beyond to the force sterilization practices in the US.

    So, the word "eugenics" is often designed to provoke a blood curdling, Drew Barrymore-esque, "the-phone-call-is-coming-from-inside-the-house" kind of scream.

    Still, Bérubé and others like him are starting to wonder if the "miracles" of modern science today are returning us to the realm of eugenics when it comes to disabled persons. The two most important issues here are selective abortion and euthanasia.

    Selective abortion (the decision to terminate a fetus based on a prenatal (i.e., before birth) medical diagnosis) is, for Bérubé, not necessarily the same thing as a woman making an informed decision to terminate the pregnancy. Bérubé is emphatic in his belief in a woman's right to choose.

    His concern is that misconceptions of and biases against physical and cognitive impairments may lead to a new form of eugenics that seeks to erase congenital disability from the human experience. This is because, according to Bérubé, advances in prenatal screening techniques are coming faster than our own understanding of disability.

    The fear is, then, that misunderstandings about what it means to be disabled will lead expectant mothers to end pregnancies that are dearly wanted because they wrongly believe that a fetus that has been diagnosed with an impairment (such as Down syndrome) will have poor quality of life.

    For Bérubé, a prenatal diagnosis may too quickly equal a selective abortion, without a true understanding that most children born with physical or developmental impairments can go on to live very happy, productive, and fulfilling lives. It is the misunderstanding of disability, Bérubé argues, that can lead expectant mothers to give up a loved and wanted child because she mistakenly believes that abortion would be in the child's best interest.

    Likewise, Bérubé argues, the right-to-die movements that are gaining such force worldwide require us to consider what euthanasia means for people facing chronic and progressive illnesses or catastrophic injuries. Again, while Bérubé doesn't at all question an individual's right to make informed decisions about what happens to his/her body, he does worry that negative attitudes toward and perceptions of disability may lead people to end lives that are promising and valuable, even in the face of an extreme diagnosis.

    Bérubé argues that in the face of new technologies that enable physicians to diagnose illness earlier and more accurately, and in light of new methods for ending lives more humanely and with greater patient control, those faced with a medical diagnosis may feel compelled to end their lives rather than looking for alternatives that can improve the quality of their lives.

    In other words, patients may fear becoming a burden to their families. They may worry that their pain will become intolerable and uncontrollable. They may think that there are no options that would enable them have a good quality of life, even with their injury or illness. They may think, basically, that death is the only humane answer for themselves or their families.

    For Bérubé, then, current practices of selective abortion and euthanasia threaten to diminish the human experience by preventing or ending the lives of those found to be in some way "abnormal." Worse, this may be done not because it is in the best interest of the individual person, but because our unquestioned beliefs about disability assume that death—or never being born—is preferable.

    And when we reduce humanity down to only those who fall within the acceptable range of "normal," we make ourselves the poorer for it. We replace variety with sameness; we replace uniqueness with ordinariness. And we limit our understanding of others—and of ourselves.

    Thus, Bérubé calls upon medical science, bioethicists, the disabled, and the non-disabled alike to stop and think about what these new medical technologies really mean for the lives of those affected, the people who love them, and the human race as a whole.

    In other words, Bérubé suggests that just because we have these amazing new methods for prenatal screening, genetic testing, and the humane ending of life doesn't mean we should use them.

  • State of the Theory

    Disability Studies and Literary Studies

    A Marriage of More than Convenience

    Fortunately, disability studies is alive and well, not only in the academy (i.e., among fancypants theorists and scholars and teachers), but also in our schools, communities, and workplaces.

    Disability studies are becoming sort of the Avengers of the academic world, trying to figure out how the theoretical work being done in the field might translate into political action and into tangible improvements in the lives of the disabled.

    Above all, disability studies tries to restore the voices of those with physical, psychological, and development disabilities to the conversation—not just recognizing the voices that were once silenced by the cure/cover/kill model, but ensuring that those voices are heard as the loudest and the most important in the movement.

    One of the most powerful tools at work in disability studies is literary theory itself. Disability studies scholars are drawing on the insights not only of feminist and postcolonial theories, but also of reader-response criticism, trauma writing, and life-writing in general to explore the ways that we narrate the body and its experiences—and how that shapes the way that we value, treat, and use these bodies.

    Likewise, literary scholars are deploying insights from disability studies to understand how our literature is driven by conscious and subconscious beliefs about how our bodies should look, function, and be.

    In other words, literary studies and disability studies increasingly recognize that the stories we tell about our bodies are the stories we tell about ourselves. So to understand disability, we must draw on the tools of literary theory to help us understand disability's many narratives. To understand narrative, we must draw on disability studies to understand how our expectations of what it means to be a person determine the way we think—and therefore talk/write—about people.

    Long story short: words are thoughts and thoughts become actions.

    The Postmodern Disabled Body

    Flesh and Word and a Whole Lotta Swag

    In addition to the political aspects of today's disability studies comes a pretty redonkulous artistic component that, in many ways, reflects Simi Linton's concept of the embracing of disabled identity.

    Here is where that wild and freaky and wonderful area of postmodernism really starts to crank things up. Disability studies and disability advocates are beginning to use postmodern ideas to shape their own sense of identity, to challenge how their bodies are perceived, and to ensure that they—not doctors, lawyers, legislators, politicians, or educators—determine what their own bodies mean and how they are to be understood.

    Essentially, when postmodernism and disability studies come together (as they are now, woo!) what we get is Miami Ink on steroids because postmodern disability advocates do not just accept the "abnormality" of their bodies—they celebrate it. And many magnify it.

    Just like getting tatted up with body sleeves to mark your individuality, postmodern disability folks will bling out their prostheses. They'll ornament their scars with some slammin' ink. They'll decorate their deformities with all kinds of swag. An example is Alex Minsky, a former Marine who lost a leg in Afghanistan and has now transitioned into a modeling career.

    Minsky's photographs often feature, rather than hide, his prosthesis, using it strategically to represent an image of masculine strength that seems to actually be more than human, extra-ordinary, rather than "abnormal."

    The Postmodern Self

    Slip-Slidin' Away

    This is how postmodernism is shaping disability studies. Because, in postmodernism, there's the idea that who we are is never stable. It's never fixed… as opposed to the Enlightenment ideal of the autonomous self, which never changes (and to most people is pretty darn boring).

    Instead, postmodern ideas of the self tell us that we're always changing, that who were are from one moment to the next depends upon a whole host of factors, both internal and external.

    Eh, what?

    Well, the postmodern self is one in which the inside and the outside of a person are always meeting, negotiating, adapting, and changing. The inner thoughts, feelings, desires, and fears of a person meet with the outer environments, situations, and people one is surrounded by. So the person shifts and changes from one instant to the next, depending on that person's needs and desires at that precise moment.

    Think of it this way: we speak, dress, and act differently at a job interview than we do at the club or hanging at home with friends. But how we dress, speak, act, etc., are all a matter of choice, of deciding "who" we want to "be" at any given moment.

    Postmodern-inspired disability advocates argue that how we define, respond to, and represent our "impairments" is also a matter of choice. It's all about what kind of clothes, metaphorically speaking, we decide to wear on any given day.

    So decorating a prosthesis, tattooing a scar, and featuring a deformity prominently in a photograph are all an aspect of taking control of one's disabled identity and how one's bodily impairment is perceived. The self, then, becomes a work of art, something that you create for yourself by consciously deciding how you will present yourself to the world.

    "Disability" Identity

    Flowin' Like Water

    Another lesson that postmodernism teaches us is that our sense of self is always fluid, shifting and sliding from one moment to the next as our inner and outer worlds meet. This is an idea that disability studies folks can really get on board with because disability, as we've seen, is all about the idea of change.

    The most fundamental principle of disability studies is the idea of the vulnerable and changeable body, the fact that if we just live long enough, we will all experience sickness, injury, and aging, which is the reason that many disability advocates use the term TAB (Temporarily Able-Bodied) for people without impairments.

    This term just reiterates the fact that our bodies are fluid, that they are always changing, and that perfect health and functioning are only temporary. At some point, everyone will become disabled to some degree or another.

    So, in light of this idea of the instability and unpredictability of the body, disability studies takes postmodernism's concepts of the fluid identity, of the sense of self that is shaped by whatever circumstances (both inner and outer) one is encountering at the moment, to show that the "disabled identity" is never stable.

    It varies depending upon the environment you are in, the way you are feeling, and what you are doing from one moment to the next. So while a person with an impairment may not feel disabled in the comfort of her own home and among friends and family, when she ventures to a job interview and cannot reach the employer's office because of the stairs, the sense of being disabled will become incredibly acute.

    Likewise, a person who has enjoyed perfect health and functioning all his life may feel far removed from a "disabled identity" until the instant that, like Christopher Reeve, an injury leaves him permanently paralyzed.

    Today's disability studies, inspired by postmodernism, show us that, like all identities, "the disabled identity" is never fixed, it is never stable. In fact, the (singular) disabled identity doesn't exist. It is as varied as all the people who have, had, or will have an impaired body (in other words, there are as many "disabled identities" as there are people on the planet!).

    And, to make it even more complex, the disabled identity created by each individual person is, in fact, multiple identities that shift from moment to moment, situation to situation.

    So, a single, one-size-fits-all approach to disability, current theory shows us, is just plain wrong.

    Complicated, much?

  • Talking the Talk

    What is Literature?

    Literature is the point at which art and society collide when it comes to our understanding of the body and the way it is represented. Our culture shapes the way that writers deal with bodies and, especially, the way they represent extraordinary bodies. From Tiny Tim to Captain Ahab, stereotypes of the saintly and/or the bitter cripple inundate the stories we read.

    And, as good old Rosemarie Garland-Thomson shows us, disabled characters in literature have often been the occasion for non-disabled characters to learn lessons or to prove their virtue. The non-disabled characters draw inspiration from the example set by the disabled saint or prove their own worth by sacrificing all to care for the burdensome (and often bitter and ungrateful) cripple.

    At the same time that literature serves to reflect social understandings of "normative" and "non-normative" bodies, it can also be used to question and even to change these very ideas. For example, in the age of modern eugenics, Huxley's Brave New World warns us against the idea that we have the ability or the right to use scientific knowledge to shape who comes into the world and how. Toni Morrison's The Bluest Eye laments the idea that only one kind of body is beautiful or worthwhile.

    So, for disability studies, literature can be both an agent of the same-ol', same-ol' and a powerful instrument for change.

    What is an Author?

    The author is the one who is enmeshed in the many social, scientific, political, and cultural discourses of the body. She must negotiate these stories of the body because it is simply impossible to separate oneself from them. The author, therefore, is always shaped in some way by her society's understanding of the body.

    At the same time, though the writer has no choice but to be impacted by these cultural narratives, how she responds to them is a choice. An author may, consciously or subconsciously, participate in and support the culture's dominant understanding of the "normal" and the "abnormal" body or she may disrupt them by violating, or at least questioning, those representations. But whichever she chooses, the author is always engaging in the culture's understandings of the body, of what it means to have a body, and of what that body should do, look like, or be like.

    What is a Reader?

    The reader, like the author, is someone who is enmeshed. The reader is wrapped up like a big spider in a gnarly web of stories, ideas, and perceptions of the body. How the reader understands the text and the way that it treats the "normal" and the "abnormal" when it comes to bodies, their appearances, and their functioning, will depend not just on the book but on the reader's own experiences in the living world beyond the book.

    So, like the writer, the reader has to negotiate a sea of values, stereotypes, and worldviews when it comes to disability. And these perspectives will shape and be shaped by the book, either supporting or undermining what the reader knows, consciously or unconsciously, about bodies and how they do/should function.

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