How It All Got Started
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.
Bam.
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.