Tremors and wheelchairs and prostheses. Oh my.
Let's face it: the subject matter of disability studies is not exactly the cheeriest stuff in the world. After all, when we talk about disability studies, we're talking about illness. We're talking about injuries. We're talking about deformities. And, yes, sometimes we're even talking about death.
But grab a pint of Ben and Jerry's and your favorite teddy bear, huggle-bunny, and/or security blanket, Linus, because this is important stuff—essential, in fact, because disability studies ain't just about the kid in the wheelchair at school or about your great-uncle in the assisted living facility.
It's about you. And it's about us. It's about everyone with a body. In other words, it's about every body. But it won't be nearly as painful/scary/depressing as it sounds, we promise.
The fact, pure and simple, is that nobody/no body is perfect. Regardless of who we are or where we're from, the one thing that unites us is that we are all born into bodies. And if we live long enough, at some point, these fragile bodies of ours are going to be hurt. These bodies are going to get sick, and these bodies are going to die.
Like it or not, those are the facts, Jack. We're all gonna get sick and…eek…we're all going to die. Um. Yeah. Good times. So, what's next?
Well, disability studies is what's next… because disability studies, at its core, is about learning to live in and, yup, even to love these vulnerable bodies of ours. Drawing most heavily from feminist and postcolonial theories, disability studies is a relatively new field (though, as we'll see, it deals with themes that are actually thousands of years old) that tries to understand how cultures understand and react to bodies that are perceived to be "abnormal" in some way.
And, just as important, disability studies helps us to realize that these boundaries between "normal" and "abnormal" bodies impact in powerful ways not only those with so-called "deviant" bodies, but also people with so-called "normal" bodies, as we strive to live up to this cultural ideal of what "normal" is.
Above all, disability studies teach us that, in reality, "normal" and "abnormal" are just a fantasy, a construction of what a culture values and, especially, of how it expects (or requires) its citizens to look, to function, and to be.
Now, at this point you might be asking how all this fits into the wild and wonderful world of Literary Studies, right? After all, we're talking about subjects that seem best suited to fields like medicine, or social work, or special education, huh?
But not so fast, Shmoopers! Because disability studies teaches us that these concepts of the body, these lines we draw between "disabled" and "non-disabled," "sick" and "well," "abnormal" and "normal," are just as much cultural as they are physiological.
In other words, "disability" is just as much about the language we use and the stories we tell as it is about anything in our bodies or our minds.
And so, disability studies tells us, if literature helped to teach us what we (think we) know about disability, then maybe we better pay closer attention to what those lessons are and how we think through them to create new and better (or at least more just) stories of disability.
It's simple: we've all got bodies. And those bodies? Well, those bodies ain't so simple. Glossy fashion magazines and ESPN documentaries would have us believe that all bodies are beautiful and that they're all prone to superhuman feats of strength, if you just want it bad enough. But there's a reason it's called superhuman, after all.
The truth is, our bodies are funky. They're super-freaky. And they're totally unpredictable. That fact alone is enough to scare the living daylights out of us. But when we see people whose bodies have already violated the "rules" of proper functioning and appropriate appearance, we begin to cast about desperately for reasons, for rationalizations—for anything to console us into thinking that what happened to them can't possibly, no never, happen to us.
For centuries, we found those excuses, those explanations for illness and deformity, in divine fate or in God's will. The sick or deformed person was just carrying on her body the marks of some kind of celestial judgment, for good or for bad—the signs of divine grace or of holy wrath. And as long as we stayed on the Big Guy's good side, there were no worries for us.
Well, maybe not.
So, as the centuries and millennia passed, we turned to science to try to find what we thought would be the ultimate be-all-end-all for unlocking the mysteries of the body: medicine. Medicine would teach us to understand the body and its vulnerabilities. And once we understood them, we could correct them.
Or so the theory goes.
But once again, the body proved to be a slippery sort, an enigma not ready to give up its secrets quite so easily. Nothing can predict or prevent every genetic mutation that leads to cancer. No microscope is going to melt the ice that the causes the slip that severs the spinal cord. There is no scalpel that can cut out the seeds of schizophrenia in the brain.
But that's okay. Breathe. Here's what disability theory does for us and this is why readers should care: because disability theory explores what it means to be in real bodies. Not some Giselle/Beyonce/Brad Pitt/Dwayne (the Rock) Johnson amalgam of a perfect fantasy body that can never and will never exist outside of photoshop (and, really, would be pretty creepy if it did). Disability theory is about bodies that get sick; bodies that get hurt; bodies that grow old; bodies that—gulp—die.
In other words, it's about real bodies. Our bodies. And, above all, it's about how to live in them and about how to love them. Especially in a modern world that tells us that to live in and to love them is impossible.
So, really, disability studies, when it comes right down to it, is about us and the way that we see and are seen in these bodies of ours, whether they are young or old, healthy or sick, beautiful or ugly. Because the truth of the matter is that our bodies will be all these things at some point or another.
Before disability theory came along, disabled bodies—in literature and in the culture at large—were mainly just a reference point for "normal" bodies. In stories, the disabled characters were mostly just the villains or the victims (you're either Captain Ahab or you're Tiny Tim).
Regardless of whether they were scary or angelic, disabled characters existed primarily so that the "normal" characters could reveal their moral substance, either by fighting against and ultimately triumphing over the disabled enemy (and thus showing how much holier-than-thou they really were) or by rescuing the poor, pitiful one from despair or from death (and, again, showing just how awesome the "normal" character was).
But disability theory, inspired by and born of the Civil Rights movement, feminist theory, and postcolonial studies in particular, began to recognize that in the literary canon there was a whole host of disabled characters who had previously been recognized only in relation to able-bodied characters… and that these characters were known almost exclusively only by how they treated and were treated by the "normal" characters.
And, when it comes right down to it, that means that a whole lot of ideas and assumptions expressed in these books about the body, how we live in it, and how we value it were ignored, overlooked, or unrecognized.
And it ain't a good thing to leave those ideas unexamined when it's those very ideas that shape how we understand bodies (our own and others') and how we treat them.
This realization, of course, was compounded by the disability rights movements, in which disabled persons began to agitate for independence, for social equality, and (perhaps above all in terms of disability studies) for the right to define their bodies on their own terms, rather than through the terms of the medical model or of social constructivism.
And once disability studies began to recognize and reevaluate the disabled characters in literature it became increasingly—terrifyingly—clear that all bodies, "normal" and "abnormal" alike, were subject to one and the same kind of regulation.
Disability studies teaches us that all bodies, especially in our modern world, experience surveillance. All are expected to conform to a set standard of "norms," and all can be ridiculed, rejected, and "rehabbed" (Michel Foucault would call this "punishment") for failing to live up to those norms.
Not only that, but disability studies also tells us that the ways we speak, the ways we read, and the ways we write play crucial roles in the process of understanding the body and shaping it into what society requires it to be. After all, as Foucault has shown, modern medicine is built upon language: the diagnosis, prognosis, and treatment model depends first upon having a language of illness to draw from. Not to mention a narrative to fit into.
In other words, we can only call a body "disabled" (some disability theorists would use the word "impaired" instead) when we have a story—or narrative—in mind of how a "normal" body is supposed to function and to look.
You see, we depend upon this story of "normal" bodies because the "disabled" body is a threat. It scares us because we all want to be "normal," right? We all want to live in this endless state of perfect appearance and perfect ability (Rosemarie Garland-Thomson would call this the image of the "normate").
But the truth is, no body/nobody is perfectly "normal" all the time and the normate—well, the normate is about as real as a lip/chest/butt (insert your body part of choice) full of collagen. The theory of the normate rocks, but the thing itself simply doesn't exist in nature. Still, it keeps the beauty industry and the cosmetic surgeons' offices a-hummin'.
So, to cope with the threat that the impaired body, the medical model creates yet another story that makes the impairment more predictable and more controllable.
This is the narrative of diagnosis, and it helps us to understand what a specific disease, injury, or deformity looks like, what will happen to a body showing signs of that condition without treatment, and of how the story will end if "proper" treatment is applied.
In other words, it gives us the magic formula for taming the beast and for returning it, hopefully, to whatever might pass for "normal."
This narrative of disability is echoed in society, according to disability studies, in a thousand tangible and intangible ways—from those steps in front of the public building implying that the only "normal" way to enter is by climbing steps rather than by ascending a ramp, to the hushed and maudlin tones that people use to speak of about victim of an accident or an illness, as though it were unthinkable to think of them as anything other than tragic.
But the reality is that our perceptions of the body and how it is supposed to look and function are almost wholly determined by what our culture values, and as such it sheds an important new light on all the major schools of literary theory, from feminism to Marxism to deconstruction.
For example, feminist disability theorists may ask how our perceptions of the body shift when that body is both disabled and female. Can feminist theories be applied to the disabled female body?
Marxist theory may see the disabled body as an entirely new class of subject, particularly if that body cannot participate in the forces of production. If the disabled body is neither a member of the working/proletariat class nor of the labor/capital-controlling elite, then what is it?
For deconstructionists, on the other hand, disability theory offers promising new avenues of exploration into our understanding of the connections between language, the material body, and our perceptions of/reaction to those bodies. How, for example, does our relationship with the body change if it has been labeled "incurable"? What about "terminal"? What about "autistic" or "developmentally delayed"?
You see, understanding and making peace with our bodies and the bodies of others is no easy thing because it also means making peace with vulnerability and with mortality. Not only that, but it means submitting to the reality that our body is never ours alone. Instead, our body is at once private and public; it is at once flesh and idea; and it is at once biology, economics, community, and culture.
Sheesh. Our heads are hurting. How about yours?