Study Guide

Disability Studies Texts

  • Erewhon, by Samuel Butler (1872)

    Basically, Butler's Erewhon is about all things Victorian, but what's most important for our purposes is the way sickness is treated in the novel. What's happening in the story is essentially that those who were truly ill are treated like criminals with great moral defects. While the truly redonkulous people in this fictional country of Erewhon are treated like they are ill and therefore not responsible for their actions.

    Butler is responding here to the tendency in this era to blame victims of a profoundly unequal society on their own ostensible shortcomings. For example, as we've seen throughout this module, the poor in this era were often equated with disease and it was suggested that not only were they diseased themselves, either in body or in mind (and often in both), but that they were responsible for the infection, the disorder, and the chaos of the entire society.

    Likewise, prostitutes—but never the men who employed them—were frequently confined to so-called "lock hospitals" for the ostensible purposes of protecting the community from their moral and physical corruption.

    Butler creates this fictional country in order to condemn what he saw as the increasing—and wrong-headed—influence of legislators, social leaders, scientists, and physicians who too frequently "punished" the innocent for their suffering while permitting the guilty (such as the men who frequented the prostitutes) to go free.

    So, let's think about the men and women who inhabit this country of Erewhon. Who are the "sick" in this country? And who are the "well"? And why does Butler make it so dang hard to tell the difference?

    And how does this seem to relate to moral virtues in the story? Does Butler seem to draw a line between wellness and innocence? Between sickness and guilt? Why or why not?

    We have so many questions.

    Another thing to consider: Butler has been cited with calling for greater attention to mental illness. The book is often read as a condemnation of the shame associated with seeking help for psychiatric disorders. Do you agree or disagree with this idea?

  • The Island of Dr. Moreau, by H.G. Wells (1896)

    The Island of Dr. Moreau is pretty much Planet of the Apes on steroids. In a nutshell, the book is about a young man who is shipwrecked on a desert island (but Gilligan's Island this ain't!) and there he discovers a mad scientist/evil genius-type who has pretty much exiled himself in order to avoid the condemnation he was receiving at home (England) for his experiments in vivisection.

    Yeah. A real stand-up guy, the good doctor.

    And not only is this island inhabited by Dr. Moreau, but it's also inhabited by an entire population of strange creatures… creatures that seem to be a sort of hybrid of humans and various types of animals.

    Yup, you've guessed it: old Dr. Sweetheart has not only been experimenting on animals but also on humans. And the inhabitants of the island are the result.

    The Island of Dr. Moreau touches upon a lot of anxieties, fears, and questions circulating in late Victorian England. The anti-vivisectionist movement was very powerful in this era and actually posed one of the first and only real threats to the growing power of modern medicine and experimental science at this time.

    As you read Dr. Moreau, some things to keep in mind are how the story treats both animal and human rights. What does this story suggest is our moral responsibility to other human beings? To animals?

    And within the scope of disability studies, this all ties in to our understanding of what it means to be human: at what point does a human life cease to exist? Not only that, but how far should we go to defend that life? Should animals be sacrificed to save a human? Should they have to endure pain for this purpose? At what point do we end suffering and how far should we go in order to do this?

  • Lady Chatterley's Lover, by D. H. Lawrence (1928)

    Okay. Let's face it: a book like Lady Chatterley's Lover sounds like something you'd find in a 12-year-old's sock drawer just so that they can read about sex. And, yeah, it's made more than a few people a little hot and bothered since its publication, we're sure.

    So what in the world does a romance novel that's been banned in schools worldwide and pretty much borders on the pornographic have to do with disability studies? Two words: Clifford Chatterley.

    You see, the lusty Lady Chatterley's got a man—a husband to be precise. And while that may make the sex with the gamekeeper even hotter, it also poses a problem, especially for disability studies scholars. And that's because Clifford is rich. He's brilliant. He's not a bad husband.

    But he's also paralyzed.

    After suffering a paralyzing wound in WWI, like so many millions of others, Clifford has decided to devote himself to the "life of the mind." That means turning away from all things physical, sensual, and intimate. Clifford has turned into a kind, but cold, companion, leaving Lady Chatterley to seek comfort elsewhere. And boy does she.

    But this book calls a lot of things into question when it comes to representations of disability. After all, Clifford Chatterley's fictional experience was that of countless real young men injured in the war (not to mention the innumerable others injured by just the day-to-day hazards of living).

    So as we read this novel, we should ask ourselves what this story can teach us about the nature of relationships with those who have a disability. Must the disabled always spurn the body? Is the "life of the mind" the only option? How do we understand marriage within the context of disability? What about family and reproduction? What about pleasure? What about sex?

  • Brave New World, by Aldous Huxley (1932)

    We really don't think that Aldous Huxley had a crystal ball and could look into the future and see our modern world of prenatal genetic testing. But reading Brave New World sure makes us wonder.

    Basically, Brave New World makes The Island of Dr. Moreau look like the feel good hit of the year. Because now we don't just have one nut-ball doctor/scientist experimenting on humans, we have them all. In the dystopia of the World State, the primary setting of the novel, there's no more natural reproduction (relax, guys and girls: there's still sex, though, and lots of it). Instead, all babies are created in a lab, through a sort of in-vitro fertilization.

    And then comes the kicker: these lab-created embryos (i.e., all embryos in the World State) are subjected to genetic testing and the results are used to determine how they will be classified after birth, whether Alpha or Beta—or lower—castes. Not only that, but these embryos are conditioned, through the scientists' manipulation of their cells and of the external environment in which the embryos are grown, to ensure that they fill their "proper" social roles.

    For those people designated to fill the lowest castes of society (the Deltas, Gammas, and Epsilons), the manipulation is even more sinister, as the embryos are injected with chemicals to arrest their development, ensuring that they will never think, hope, or act "above" their given status.

    Into this skeezy world comes the "Savage," a product of natural reproduction and a native of the "reservation" surrounding the World State.

    As we read Brave New World, we have to think about how this might relate to our modern world of prenatal screening and selective abortion. Bérubé warns us that our technology is moving faster than our understanding of it—and it's certainly moving faster than we can find answers to all of the ethical questions this technology raises.

    So when we read Huxley, we have to ask ourselves what we would do if we had the technology to intervene before birth to the extent that the scientists in the World State do? Where do we draw the line when it comes to creating these designer babies?

    Not only that, but the World State is completely free of those problems that plague our world: there is no violence; there is no crime; there is no poverty. And yet there are also no choices. Everything has been pre-planned and pre-programmed before the child's birth. You are born into your role in life and you have no say in the matter.

    So we guess the question becomes, Shmoopers, if we could live in such a "worry-free" world and all we had to give up was our right to choose the course of our own lives, would we?

  • The Diving Bell and the Butterfly, by Jean-Dominique Bauby (1998)

    Bauby's memoir, The Diving Bell and the Butterfly, isn't a Gothic novel, like most of the ones we've discussed so far, but those who haven't yet read the book would probably expect it to be.

    The book is actually the firsthand, non-fictional account of a man's life after a brain aneurysm has left him with what doctors refer to as "locked in" syndrome. In most cases of locked in syndrome, the patient is fully conscious and has the capacity to see, smell, touch, and taste everything. But, at the same time, the patient has almost no capacity to physically respond: the patient cannot speak or move. S/he is, essentially, "locked" inside the body.

    Bauby lived several years in his locked in state, capable only of blinking his left eye. For most us, such a condition would seem unimaginable. It would seem almost obvious that death would be preferable.

    And yet The Diving Bell and the Butterfly calls such knee-jerk assumptions into question. The memoir was dictated one letter at a time by Bauby blinking his left eye when his nurse named the letter he desired. Though the process must have been agonizingly slow, the result was the story of an existence that continued to be beautiful, even after the catastrophic injury.

    Bauby describes how his mind took over once his body failed him; he would escape into extraordinary fantasy worlds that he would never have known in his busy life as an editor for Elle magazine in Paris. This life, he suggests, was even richer than the life he enjoyed with a fully functioning body because it was bound by nothing but his own capacity to imagine.

    Not to say that it was all cotton candy and roses, of course. Bauby doesn't flinch when he describes the truly crappy aspects of his existence: not being able to hold his son, not being able to eat food when it smells so good, not being able to laugh as he used to, and, above all, having to fight every day to stay alive.

    But Bauby did want to live, even in a body that those on the outside would call "unlivable," because he still found joy and value in it. And he was about as disabled as they come.

    So as we read Bauby, we have to ask ourselves what his story tells us about what it means to be alive. Is living really about the body? Or is there something more? At what point do we say that our own lives or the lives of others aren't worth living? How can we know until we get there? And what does this mean for the way that we understand and react toward people with catastrophic illnesses or injuries? Is our responsibility to support them in living or to support them in dying?

  • Embodied Rhetorics: Disability in Language and Culture, by James C. Wilson and Cynthia Lewiecki-Wilson (2001)

    This collection is sort of the Superman of studies—relating disability to the material world around us and showing us, specifically, how this clash of bodies and space shapes the way that we understand and talk about disability.

    In other words, our world is a space that is both linguistic and material, man. And a building with steps only leading to the front door speaks just as loudly as any medical diagnosis about the way that we think bodies should function. If there are steps only, then this is an example of a material rhetoric saying that all "normal" bodies should be able to climb them. No freaks allowed.

    The authors in this diverse collection explore everything—from the way that our medical language shapes the way that we both view and behave in our bodies to the way that classroom layouts, with all desks facing the teacher far away at front, suggest that the "only right" way to learn is to listen to and watch the teacher (a proposition that excludes, in one fell swoop, deaf, visually impaired, and learning disabled students).

    The essays in Embodied Rhetorics require us to ask how the world we live in is shaping our understanding and treatment of our bodies and those of others, especially when it comes to disability.

    How do we define what disability is? Is it in our language? Is it in the way we construct and move through our world? And if "disability" is a product not just of how we speak about it but of every practical, material aspect of our lives—from the way we educate to the way we raise our families—then where do we begin in making a more just world for all types of bodies?

    Hard questions, Shmoopers.

  • Vulnerable Subjects: Ethics and Life Writing, by G. Thomas Couser (2003)

    No doubt about it. Couser is awesome. In his book, Vulnerable Subjects, he cautions us against buying too readily into all those feel-good stories that are becoming so popular nowadays.

    You know the ones: brave quadriplegic overcomes adversity to win gold in the Paralympics; former drug addict beats disease and becomes a neuroscientist; noble mother nurses her disabled son through his last illness.

    Couser argues that these stories, while important, threaten to perpetuate the very stereotypes they would seem to refute. In other words, these stories are just the same old clichés—especially the story of the "Supercrip" (like angelic Tiny Tim) and the martyrs who love them—masquerading as a more enlightened form.

    Couser warns us that life writing when it comes to disability can be just as exploitative and just as stereotyping as any of the older narratives. In other words, these stories are not always what the disabled want to tell—they're what they have to tell; they're what society requires them to tell in order to be thought of as a "good" and "triumphant" supercrip.

    Not only that, Couser argues, but these stories are so pervasive and yet so subtle that we all buy into them, disabled and non-disabled alike, and so we almost instinctively, without thinking, fall into these same narrative patterns over and over again. This is why, Couser tells us, so many stories follow either a triumphant or a tragic model—because no one knows how to think or speak about disability in any other way.

    And these patterns persist, he says, into the way that science and medicine understand, react to, and speak of illness. For this reason, we are now seeing DNA as the "life script" of the individual and gene testing as the way to determine if that script will be one of triumph or of tragedy.

    But, if we've learned anything from stories like Brave New World, it's that we don't want our lives—or our stories—written for us. So Couser asks us to think about how we might tell stories of disability differently. What would disability narratives look like without this triumph/tragedy model? And if we could break free of this, then how would our understanding of disability change?

    The fact that stories and voices can so easily be appropriated and exploited is also incredibly important, and Couser asks us to think about what it means to "speak for" others? How can we tell someone else's story? And what gives us the right to do so?

  • Disability/Postmodernism, by Tom Shakespeare and Mairian Corker (2002)

    Shakespeare and Corker take the postmodern ideas of someone like Donna Haraway in her "Cyborg Manifesto" and apply them to disability in such a way that it makes the possibilities for all bodies—"disabled" and "non-disabled" alike—look pretty awesome.

    Basically, Shakespeare and Corker break out of the kind of dualistic thinking that limits us in our modern, post-Enlightenment world. You know: normal/abnormal, well/sick, medical model/social model.

    A postmodern view of disability recognizes and embraces the variety and the instability of all bodies. And it shows that the line between the disabled and the non-disabled is vague and slippery at best.

    But, in reality, our postmodern bodies are all, to some degree or another, artificial. We tan. We dye. We straighten crooked teeth and we curl straight hair. We insert hair extensions and artificial hips; we affix fake nails and mechanical heart valves. The "natural" body, like the unicorn, just doesn't exist.

    And instead of bemoaning that fact and of stubbornly holding on to our ideas of what is "normal" and what is "abnormal" when it comes to our bodies, Postmoderns—according to the authors—embrace the uncertainty of the body and relish the ways that we can change it as we need or want to. So we bedazzle our prostheses. We attach streamers to our wheelchairs. And we become the cyborg—part flesh and part machine.

    Disability/Postmodernism invites us to think about how our modern technology is changing the way that we understand our bodies. If body parts wear out, we simply replace them. So what does that mean for our understanding of the human? And how do we use these technologies ethically? Should a runner with artificial legs be allowed to compete alongside runners with legs of flesh and blood?

    And where does our capacity or our right to alter our own bodies end? Should a person be allowed to cut off his/her arm and leg, just because s/he wants to? At what age can we begin changing our own bodies? Should a 12-year-old be permitted to get breast implants? How about a 90-year-old?

  • Enforcing Normalcy: Disability, Deafness, and the Body, by Lennard Davis (1995)

    In this important work, Davis builds upon his theories of the ways that our modern concepts of the "norm" and the "normal" emerged, arguing that at the heart of these ideas is an attempt to construct the modern nation-state. The- wha?

    In other words, Davis is arguing that we build and maintain a sense of ourselves both as citizens and as a nation by constructing, and then internalizing (so that we don't have to think about or question them) assumptions about how bodies should look, function, and behave. Thus, the "American" body is robust, competent, and self-actualizing—the fleshly embodiment of our patriotic ideals of equality, liberty, autonomy, and the pursuit of happiness. USA! USA!

    Not only that, but Davis also looks at the visual arts, including Classical Greek and Roman sculpture, to show how sight/visibility is used to enforce—and to undermine—our collective beliefs about and requirements about bodies—and the citizens who live in them.

    Davis shows that Classical art often depicts broken and incomplete bodies (i.e., armless, legless) to at once enforce and to question assumptions of what "wholeness" and "normalcy" really mean. These are questions and practices, Davis suggests, that carry over into our postmodern practices of shaping, shifting, and celebrating the artificial, incomplete, and wounded body.

    As we read Davis, we should think about how our assumptions and requirements of the body link to our assumptions of ourselves as citizens. How might the ideals that shape our sense of self as a nation shape what we believe about our bodies and the ways they should look and function?

    And what roles do the visual arts, and the art of looking, of visibility, play in determining what we think about and expect from our bodies and the bodies of others, especially when that body is "non-normative"?

  • Staring: How We Look, Rosemarie Garland-Thomson (2009)

    Yup, here she is again—our good old RGT. And in Staring, RGT builds on the theories she has cultivated in her early career to explore the human impulse to look and then to explain what we see. She pulls from a variety of sources—the media, the visual arts, and even the psychological and biological sciences—to assess this impulse to stare and then to name and to understand through the stare.

    At the same time, RGT also explores the process of being stared at and how this connects to self-awareness, to shame, and to pride. In doing so, she shows that it is in this reciprocal exchange, this give-and-take, between staring and being stared at, that we construct a sense of our world, others, and ourselves.

    This links in important ways to disability studies because, as we have seen so often, it's through the visibility of the non-normative body that people so often construct and enforce their own identities and the identity of their communities. This means, as we have seen, that extraordinary bodies have at times throughout the centuries been made very visible, for example, in the form of the freak show.

    But in modern, medical society, the visibility of extraordinary bodies has fallen under stringent control. The visibility of the non-normative body is often confined to the examining room or to photos in a medical textbook. "Keep it away" is our modern world's motto.

    RGT shows us that how we look (both in terms of "looking at" and of "appearing") is a fundamental and instinctive human process through which we organize and explain our world, our community, and ourselves. So, this forces us to ask how we should approach and understand the visibility of extraordinary bodies.

    Should the visibility of injuries, illnesses, and deformities be confined only to the examining room? If not, then how can we look at non-normative bodies, or have our non-normative bodies looked at, without falling into exploitation, appropriation, or stereotyping?

    In other words, how do our practices of looking and being looked at shape our sense of self and community? And how can we harness this human instinct in the service of equality, freedom, and inclusion? Does the stare always have to be negative or abusive?