Watch out for literary critics. They can get feisty.
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.