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Yup, we're going a long, long way back, folks, but if you wanna get a good idea about just where we get our earliest ideas about disability, you need to start with Aristotle, the dude who gave us so many of the ideas that shaped our Western culture. In his Politics, dear old Ari writes,
As to the exposure and rearing of children, let there be a law that no deformed child shall live. (bk. 7, part XVI, para. 5)
That's right, folks: one of the founding fathers of Western thought is arguing here that disabled infants be left to die (i.e., left outside in the elements to die of exposure) for the good of the state, which, according to this principle, could only prosper when populated by healthy, fertile, and productive citizens.
Ring any bells? Sounds a bit like the eugenics movements of the late-19th and early-20th centuries, doesn't it?
Even though Francis Bacon was writing about 150 years before the age of the natural philosophers, he was really practicing natural philosophy before natural philosophy was cool. What a hipster.
Basically, what Bacon did in his Novum Organum (Latin for "new instrument" i.e., instrument of science) was to argue for the scientific study of nature's "aberrations," those organisms that seemed to diverge from the natural order of things. These organisms, Bacon argues, would help us to unlock the secrets of the universe, to understand how nature should work by objectively exploring nature as it should not be.
And, thus, the science of using the "abnormal" to define "normal" was born.
Now we're getting to the rock stars of natural philosophy. The Saint-Hilaire boys (father and son) took the Enlightenment motto of " dare to know" to the max in their studies of non-normative, "monstrous" bodies. And we thought Stephen King had some pretty creepy hobbies.
But what sets the Saint-Hilaires apart from your average aficionado of the weird and wonky was that they were the first to really study the biological basis of physical differences. Rather than seeing "aberrant" bodies as signs from God or as portents of good or of evil, the Saint-Hilaires used that new-fangled theory, the scientific method, to find scientific explanations for deformity and disease. Instead of seeing non-normative bodies as tokens of sin, of a blessing, or of a curse, they saw instead natural, rational, and empirically explainable causes.
And here we have one more giant step toward the medical model and the locating of disability in the body of the patient, in "problems" that only modern science can "fix."
Good thing? Bad thing? You make the call!
Yeah, we know, we know. Darwin gets so much press that he's pretty much become the poster boy for 19th-century science. And there's really not a lot to add that you probably don't already know about our original Chuck D. Phrases like "survival of the fittest" and "natural selection" were as ubiquitous in the mid- to late-19th century as they are today.
But the kicker about Origin of Species in regard to disability studies is that you can pretty much draw a straight line from Darwin right to the rise of the modern professional sciences (especially modern clinical medicine) on to eugenics and then on to the rise of the modern medical model.
You see, Chuck D. teaches us that biological organisms are the products of their environment and of the selective adaptations that enable them to survive and reproduce.
And in plain English, all that really means is that every living thing wants to live long enough to have as much sex as possible.
Why? It's all about DNA, folks. These genes of ours are single-minded little critters, bent on reproducing themselves through countless generations into the future.
But to do that, to live long enough to make lots of babies, whole hordes of Mini-Mes, you have to be smart; you have to be sly. You have do whatever it takes to ensure that you survive in this dog/cat/fish/snake/bird-eat-dog/cat/fish/snake/bird world of ours.
And that means you have be adaptable, dropping those least helpful traits like they're hot and acquiring/evolving those attributes that help you to survive and endure (and, yup, make babies) above all the others.
The Hunger Games has nothing on Darwin, folks.
But what do we have when we have an idea that the whole fate of a species can rest on the fate of just a few of its organisms? When a species' destiny is determined by how well the bodies of its members function and adapt? That's right: we have the "normal" (i.e., adaptive and desirable) versus the "abnormal" (unadaptive and undesirable) body.
And from there it's only one small froggy jump to eugenics, to cure/cover/kill, and to illness, injury, and deformity as "problems" to be "fixed" through modern science.
If you thought Darwin was depressing, wait 'til you get a load of Max Nordau.
You see, Nordau wasn't the happiest of dudes. In fact, if ever a body needed bear hug, he did. That's because Maxie boy was pretty much convinced that our modern world was a cesspool of immorality, pestilence, and disease. Hence the cheery title of his most famous work, Degeneration.
Basically, Nordau argues that his "modern" world, with its busy, crowded cities, rampant industrialization, and—gasp!—modern art (Oscar Wilde, Richard Wagner, and Henrik Ibsen, you degenerate beasts, you!), was leading to the deterioration—the degeneration—of the human species.
Inspired by the most depressing aspects of Darwinian theory, Nordau argues that his increasingly modern world—and especially the major metropolitan areas such as London and Paris—was changing humanity's physiological, psychological, and even moral makeup, much in the same way that the creatures Darwin studied were shown to acclimate or adapt to their environments.
Nordau argues that the modern metropolis forces humans who live there to adapt by becoming weak, nervous, addicted (especially to alcohol), promiscuous (where are our smelling salts?!), and diseased.
And, just to put a cherry on top: Nordau states that—just like the acquired traits that Darwin says were passed down to a biological organism's offspring, perpetuating and adapting themselves with each generation until, at last, a new species is born—we humans will also be perpetuating these "degenerate" traits acquired through our exposure to our new modern world.
And we will pass these traits down across the generations until, at last, the human race is nothing but a slobbering mob of barbaric, ignorant, violent, and diseased animals. The human race, Nordau suggests, is devolving, not evolving.
Despite all the bad press Nordau gives the modern world, don't fear, Shmoopers: our old buddy Max says there's hope at hand.
You see, according to Nordau, all of these skeezy traits that humans are acquiring in the modern world—you know, like the tendency to be a boozer, a horn dog, or an all-around freak show—all these traits show up in some way in the physical body.
Yup, that's right. Got a forehead so big it's really a five-, six-, or ten-head? Could mean you're a little scrambled in the noggin. Better call the psychiatrist, stat.
Chin a little weak? Uh-oh. Could be a sign you're lazy and are going to end up in the workhouse. Better get the civil authorities to straighten you out and get you on the path to good living.
Brow bone jut out a little far? Yikes. That could mean you've got criminal tendencies. Better call the police. Or Saul.
If you're thinking this sounds a little like Minority Report you're absolutely right. But this is all very real and it draws upon various late-19th-century practices such as physiognomy and phrenology, in which so-called "experts" search the body for physical indicators of the person's physical and mental health, as well as of his/her moral character.
Nordau argues in his Degeneration that the decay of the human species, its gradual deterioration, will show itself physically in the body of the degenerate person and that only intervention by learned authorities can protect the person—and the human race as a whole.
Can you say "eugenics"? We know you can!
The Black Stork is a film that questions whether infants born with congenital disabilities should receive medical treatment that would save their lives or whether they should be permitted to die. The film was inspired by the true story of one of Haiselden's own patients, an infant with multiple congenital defects named John Bollinger.
Haiselden persuaded Bollinger's parents to permit the child to die rather than to proceed with the surgeries that would save his life, arguing that the child, born with congenital syphilis, would be a life-long outcast who would resent and detest his parents for allowing him to live. The child did die, and his death was documented by the media.
Many were outraged by the willful medical neglect of the infant and protested strongly against it. That is, until The Black Stork premiered. In the film, a child, born like Baby Bollinger with congenital deformities due to syphilis, is allowed to live. He grows up and fathers a horde of "deformed" and "degenerate" offspring who return to violently kill the doctors who had performed the surgeries that saved their father's life.
Of course, the connections between this film and the eugenics movements that were so prevalent at the time are pretty obvious. The Black Stork gave rise to a whole host of eugenics-inspired films, such as 1927's Are You Fit to Marry?
The graphic and very disturbing images of disabled persons that were featured in The Black Stork opened up a discussion about what images were appropriate for the media to capture and what images were not. In fact, The Black Stork was found by audiences to be so disturbing that the National Board of Review of Motion Pictures conducted a series of hearings to determine how—and if—this film should be screened for general audiences.
The findings of these investigations would ultimately lead to measures censoring the film industry and forbidding filmmakers from photographing or recording images of disabled bodies. The sight of profoundly deformed, sick, or injured bodies, it was thought, was often too disturbing for the public at large.
It turns out, though, that this idea was kind of a double-edged sword. Because, while, yeah, staring at people's deformities via freak shows and cabinets of curiosities (and, now, through the forever images of film and photography) may not exactly be the kindest way to treat people with bodily differences, there are worse things.
And this is where the pendulum swings from one extreme to the next, because those censorship measures that films like The Black Stork gave rise to were only one example of the "rules" that began to crop up around this time regarding the visibility of the disabled body.
In fact, between the 1860s and the 1970s, many American cities instituted what are now known as "Ugly Laws," which forbade people with specific kinds of visible disabilities from appearing in various public spaces, such as restaurants. The theory behind this was precisely the same as that motivating the film industry's censorship—certain kinds of disabilities were just too disgusting or too disturbing to be seen in public.
And from there until the late-20th century, it was thought that the only "proper" place to reveal one's visible disability or deformity was in the doctor's office.
Supreme Court Justice Oliver Wendell Holmes wrote the assenting majority opinion (in other words, he put into (cringe-worthy) words what most of the rest of the Supreme Court justices were thinking about this case) that Carrie Buck—a young woman from Virginia who had been found (wrongly, it turns out) to be suffering from developmental delays—should be sterilized against her will.
The ruling was based upon the idea that Buck and others like her who carried "undesirable" traits should not be permitted to reproduce in order to "protect" the health and well-being of the human race.
And among these "undesirable" traits, it turns out, were not only the developmental, psychological, and physical disorders typically associated with disability, but also a host of other "conditions" that could range from a family history of poverty, to a family or personal background of addiction (especially alcoholism), and even to a history of pregnancy outside of marriage.
Yup, a woman who had a child outside of marriage could be judged by medical and legal authorities to have a "moral" defect that required the intervention of physicians and of the courts. This was particularly true if the woman was also poor and/or non-white. All we can say is, "@%&!?@$%???"
So, what the Buck vs. Bell case shows us above all, Shmoopers, is how horrible everyone is. Um, also how fluid the concept of "disability" can be. Back then, whatever was thought to be undesirable in a person—the way that they looked, functioned, or behaved—could be attributed to some sort of underlying defect or disease.
This was the moment when whatever was thought to be "abnormal" about a person became, in our own Rosemarie Garland-Thomson's SAT terminology, "pathologized." And, if the problem was pathological, then it was up to the authorities—the doctors, the lawyers, the judges, the legislators, and the social workers—to fix it.
Cure/cover/kill in full effect.
Many theorists currently working in the field of disability studies look at Tod Browning's 1932 film, Freaks, as a kind of precursor to today's understanding and practice of "freakery," that sort of postmodern celebration of weird and wonderful (especially in the old sense of "wonderful" and "wondrous") bodies.
Browning's film appeared at a moment in which film censorship rules were rather relaxed. It took advantage of a pivotal point in time before the film industry final forbade (or at least for the next few decades) the depiction of real disabled people, as opposed to actors feigning disability, on film.
But what's really awesome about Browning's film—what makes it truly extraordinary—is the way that the "freaks" (and, yeah, using the word to refer to people with impairments makes us want to throw up a little in our mouths, too, but those were the times) are actually the best people in the film.
No, the disabled people in Browning's film are not SuperCrips, like Dickens' Tiny Tim. They're real, flesh-and-blood, ordinary people—who just happen to have impairments. This is set against Browning's representation of his "normal" characters, who are depicted as scheming and corrupt and pitiable.
This isn't to say that Browning's film is all buttercups and roses. It's set in a traveling circus like the kind Browning himself traveled with as a young man, and some of the elements of the film are painful to watch.
But what sets this movie apart is that in a historical and cultural moment marked by movies like The Black Stork, by controversies like the death of the Bollinger baby, by rulings like Buck v. Bell, and by legislation like the Ugly Laws, Freaks at least presents a different image of disability, an image that doesn't seem to belong to the cure/cover/kill model.
And, sad to say, that's an image that we wouldn't see again for a very long time, folks.
This may be one of the most important Supreme Court rulings of the 20th century when it comes to civil rights in the United States. Essentially, Brown v. Board of Education ensures equal protection under the law for all US citizens. Practically, what this meant was an end to segregation, especially racial segregation, in American schools.
Prior to Brown v. Board of Education, schools, especially schools in the south, were often segregated by race based upon the premise of "separate but equal." Essentially, this idea says that it's fine and legal to require persons of different races to be educated separately, confining students to their "own" schools based on their race, as long as all those schools, black, white, or whatever, were of equal quality (no, we don't get it, either).
But when Brown v. Board of Education desegregated the schools, arguing that "separate but equal" was not "equal" at all, it meant a number of things for persons with impairments.
You know that idea of cure/cover/kill? Well, it's only a short jump from Brown v. Board of Education to the realization that cure/cover/kill practices are pretty segregationist themselves. What else does "cover" mean but hiding away, separating?
And this is precisely what was going on in the 1950s, as we can see in the Ugly Laws. At this time, people with severe impairments—especially if those impairments were highly visible—were often institutionalized. This was a practice carried over from the early decades of the late-19th and early-20th centuries and it was only with the Civil Rights reforms of the 1960s that the movement to deinstitutionalize those with physical, developmental, or psychological impairments would begin in earnest.
Still, the Brown v. Board of Education ruling brought with it new challenges to long-standing traditions of forbidding disabled persons access to public education, an early and important step in the process of "mainstreaming," or integrating disabled people into schools and workplaces.
But don't celebrate too fast, Shmoopers, because we're not at all home-free. You see, while Brown v. Board of Education moved us forward as a nation in ensuring equal rights for all, regardless of race, creed, or color, disability often comes with its own unique set of challenges.
After all, there are some disabilities, such as visual and hearing impairments, which require a different set of accommodations from the so-called "normal" or general population. It's sometimes not enough just to allow everyone to go to the same school. For some students, accommodations will have to be made just to ensure that the education they're receiving truly is "equal."
Stay tuned, Shmoopers. Now it's gettin' good.
If the desegregation of schools brought about by the Brown v. Board of Education ruling could be thought of as the true start of the Civil Rights Movements of the 1960s and '70s, then Ed Roberts' admission to UC Berkley in 1964 can probably be just as easily thought of as the start of the disability rights movement.
Paralyzed from the neck down by polio in 1953, Roberts had to fight a long, hard battle to earn his place at the university, whose admissions staff initially denied Roberts entry based on the assumption that his disability was just too severe to ever enable him to work.
And, what do we know from our earlier readings? That's right: that our Western ideas of who is a true, worthwhile citizen—of whose life is valuable, worth living, and worth investing in—are all based on the idea of productivity. How much you produce, how much you contribute, well, that's just how much your life is worth.
In other words, from Aristotle on, it's all always been about making money (usually for other people).
So then here comes this Roberts guy, paralyzed from the neck down, practically unable to breathe without the benefit of an iron lung, and he wants this crazy education at one of the best schools in the country—a school that hordes of fat cat East Coast boys with million-dollar prep school educations and mad athletic skills are killing themselves just to get a shot at.
And this guy, who's bound to live the rest of his life dependent on the state, wants one of these few, coveted slots in the school? Oh, no no no. See: he won't make anyone any money.
But that's precisely what happened: Roberts won his spot in the school, amid newspaper headlines that read "Helpless Cripple Admitted to UC." An empty wing of the campus hospital was transformed into a dormitory to make room for his iron lung, and the program that evolved, through the combined efforts of Robert and the UC Berkley administration, became the first in the nation to support severely disabled students in their studies at major universities.
Disabled students enrolling during Roberts' time at UC Berkley eventually united, calling themselves the "Rolling Quads," and ultimately formed into a highly active political group advocating for accommodations—such as curb cutouts and wheelchair-accessible public transportation—which would provide disabled students with opportunities for the same access to and experience of university life as non-disabled students.
And not only did Roberts not end up dependent on the state, but he also won the Macarthur Genius Grant and ended up leading the first independent living movement, heading the Center for Independent Living (CIL), which set the stage for vocational rehabilitation support and services designed to enable even the most profoundly disabled to have meaningful employment, support themselves financially, and live independently.
The Rehabilitation Act of 1973 built upon the work of Roberts and others to help ensure that the disabled—and particularly those with the severe disabilities—could not be discriminated against by any federal institution (pay attention, folks, because that last bit's important) on the basis of their disability. Basically, this was a ruling that, like Brown v. Board of Education, promised equal protections under the law, but specifically in regard to developmental, physical, and psychological disability.
This law also enlisted the support of the federal government, especially through the support of the Secretary of Health, Education, and Welfare, in providing training and support services to help the most severely disabled find meaningful work and live as independently as possible.
And, as with anything, the cornerstone of this Act was education (stay in school, Shmoopers!), ensuring that disabled persons received the support that they needed to educate themselves according to their interests, talents, and abilities. Because if the disabled had the education they needed, they could support themselves and leave behind the hospitals, nursing homes, and institutions to which the disabled had been confined for so many decades and, yes, even centuries.
Take that, cure/cover/kill.
While not exactly a disability studies work, Haraway's "Cyborg Manifesto" is pretty much the Big Daddy (well, since it's a feminist text, maybe we should say the Big Mommy) of postmodernist ideas of the body.
Essentially, the Cyborg Manifesto celebrates new ideas of the body as a created (or, to use the smarty-pants theory word, "a constructed") thing. And, in our modern, technological world, where boundaries of geography, of class, of politics, and even of race and gender are constantly shifting, so, too, is the body.
The modern body, for Haraway, is an unstable thing and it is a blended thing—a hybrid of the human in all its various forms and of the animal and of the cybernetic. After all, modern medical science now enables us every day to replace defective human heart valves with the valves of pigs and cows. When our hips and shoulders and knees wear out, we just replace them with plastic and titanium and steel.
Our modern bodies are constructions, prefabricated designs made to serve our purposes in the moment and then to be altered or dismantled as we choose. We are, in other words, an artistic creation blending the human and the animal and the robotic.
The "natural" human body doesn't exist anymore, according to Haraway, and she thinks that's a pretty awesome thing.
And you know what? Postmodernist disability folks, as we've seen, think so too.
The Americans with Disabilities Act takes the Rehabilitation Act of 1973 and makes it hardcore. Basically, what the ADA says is that it's not just federal institutions that can't discriminate on the basis of disability.
Nope, employers, schools, universities, the nation as a whole must ensure that persons with developmental, physical, and/or psychological impairments have the same access and opportunities as the general public.
This means that reasonable accommodations must be made (though how to figure out just exactly what "reasonable accommodations" are is a pretty sticky issue even today) to ensure that public buildings are accessible, that employers' hiring and employment practices are fair, and that schools and universities give equal educational opportunities to disabled and non-disabled students alike.
The act impacts in some way almost every major attribute of American life, from employment and education all the way to public transportation and telecommunications (for instance, there is the provision that communication systems have to support accommodations, such as teletype, for users who have hearing impairments).
Now we're seeing a social structure start to emerge that can enable people of all bodily varieties to move through their communities largely—if maybe not entirely—as they want or need to.
Need voice-enabled crosswalk signals? No problem! Need kneeling buses and curb cutouts? Can do! Need closed captioning for your TV? We got you covered!
If legislation like the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 can be seen as major leaps forward in creating a legal and political climate of inclusion for the disabled, Lennard Davis' groundbreaking anthology The Disability Studies Reader may be seen as carrying that same spirit of progress into the academic and the world of cultural studies.
Davis, who edited and contributed to this anthology, brought together the rock stars of the relatively new field of disability studies and, as a result, changed the way the field was perceived.
Prior to Davis' collection, disability studies, well, it was kind of the redheaded stepchild of the academic world. You knew it was there but you maybe didn't know what in the world it had to do with you.
But when Davis brought together some of the most awesome voices in the field, our own Rosemarie Garland-Thomson (yeah, we speak of her so often, we might as well get her initials tattooed in a heart on our right bicep) included, we ended up with a book that showed us why disability studies matter—and not just to the disabled, but to us all.
Basically, the DSR took the most brilliant (and we do mean brilliant—like, scary smart) people and they drew from other well-established and highly respected fields, such as feminist and post-colonial studies, to show that disability studies is an important, relevant, and needed field of academic work.
In other words, the DSR showed that disability studies is not just a political movement. It's not just about curb cutouts or even about employment and education laws. No, disability studies is about identity and about culture. It's about how we think of, represent, and talk about bodies, both the "non-disabled" and the "disabled," the "normal" and the "abnormal."
And it is about how these constructions, these ideas about others and ourselves, shape how we build, live in, understand, and are understood by our world.
In short, disability studies are all about what the university was meant to do. To paraphrase Frank Sinatra, if you can't do disability studies there, you can't do 'em anywhere.
A groundbreaking work in the process of uniting the political with the cultural and the theoretical, of ensuring that the academic and the political were not separated, was James I. Charlton's Nothing About Us Without Us, published in 2000. Charlton's text was one of the first and most important works that helped to unite theory with political activism.
In other words, Charlton helped to transform disability studies from the kind of stuff old dudes in tweed jackets talk to each other about over their snooty luncheons to the kinds of things that real people—especially real people with physical, cognitive, and psychological impairments—argue about and fight for in places where real, tangible change is possible, like courts of law, employment offices, and university admissions centers.
Long story short, Charlton took disability studies to the streets, making it a political movement bent on improving the lives of those with disabilities, rather than just talking about them. Not only that, but Charlton and his cohort demanded that the leaders of these political movements would be those most affected—the disabled themselves, as opposed to the old model of others speaking for them.
Since that time, both the political and the academic aspects of disability studies have featured the voices of those most involved in these issues, promoting scholarship that links to real, actionable change, an improvement in the quality of life for the disabled.
A as in the ADAAA, which was signed into law in 2008 and fully implemented in 2011, institutes a number of amendments (fancy word for additions to the law in order to improve it) to the original 1990 Americans with Disabilities Act.
See, in the eighteen years between the ADA and the ADAAA, there were some amazing victories in the protection of the rights of the disabled. But there were also some epic fails, including a number of Supreme Court rulings that were later found to be too narrow in the way they implement the law.
Basically, the ADA amendments say that the Supreme Court has defined "disability" too narrowly, too strictly at times, and as a result, people who should have enjoyed the protection of the ADA didn't.
For example, some conditions, such as cancer, were found by the courts not to be a disability (Um. What.) and so people undergoing cancer treatment were not provided the same benefits—such as employment protection. Because their illnesses could be treated, they were not necessarily permanent in the way that some deformities, injuries (like some kinds of paralysis), or chronic diseases are.
The ADA amendments call for a broader definition of "disability." Above all, they require that the law be applied on a case-by-case basis. In other words, rather than broadly saying that "cancer" isn't a disability covered by the ADA, the law must look at the individual person who is asking for protection under the ADA to see how his or her injury, illness, or deformity is affecting his/her quality of life.
And regardless of whether the condition is temporary or permanent, active or in remission, if the person is found to have a history of a condition that impacts "major life activities," such as the ability to earn a living, receive an education, or to perform the essential acts of daily living, like bathing, feeding oneself, walking, etc., then these amendments require that the law fall more on the side of providing, rather than refusing, ADA protections.
In other words, it's better to apply ADA equal rights protections to those who don't need it than it is to deny them to those who do. In this case, the amendments show, the law should give too much rather than too little.
So, in the space of over 2,000 years, our Western culture has gone from seeing all disability as a liability—a sameness that is, basically, a wrongness to be left on the mountaintop to die (take that, Aristotle)—to seeing it as a circumstance that should, by law, be accommodated.
No, we're not where we need to be, Shmoopers, and we're not where we're going to be, but we're definitely not where we once were. In 2,000 years, we've come a long way, baby.