Study Guide

Disability Studies Critics

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  • Michel Foucault

    The clinic—constantly praised for its empiricism, the modesty of its attention, and the care with which it silently lets things surface to the observing gaze without disturbing them with discourse—owes its real importance to the fact that it is a reorganization in depth, not only of medical discourse, but of the very possibility of a discourse about disease.

    It ain't about the body, folks. It's about the words.

    Basically, what Monsieur is telling us here is that the clinic (the doctor's office) is built around the idea that the patient's body is doing the talking, and the doctor is only an objective observer. The doctor uses his expert training to spot the signs of disease or disorder in the patient's body and then he objectively translates these signs into a diagnosis and a treatment plan.

    But this process of observation followed by clinical translation into the language of disease (diagnosis) and treatment (prognosis and medical intervention), according to the clinical model, is built, according to Foucault, around a false idea that clinical medicine is entirely free of judgment and motivation.

    According to this model, clinical observation and practice is entirely true and accurate—an innocent representation of the signs the body shows of its disease or disorder.

    But, the truth, Foucault tells us here, is that this process of clinical observation, diagnosis, and treatment is not at all judgment-free and it is in no way an objective representation of an indisputable reality. In fact, clinical medicine is built entirely around a language of disease, a language that describes what the disease looks like, how it behaves, and what should be done to treat it.

    The doctor, instead of letting the body "talk" and objectively identifying the signs the body gives, is in fact guided by the language of disease that his medical training teaches him. He finds in the patient's body what his language teaches him to look for so that he can then treat the body in the way that clinical medicine teaches him to treat the body.

    So, instead of the patient's body guiding the way that the body is treated and talked about, it is instead the language of medicine that guides the way that the patient's body is treated and talked about. The doctor is not the objective observer who lets the body's signs of illness speak for themselves but instead he is the expert user of medical language who uses medical discourse to define how the patient's body is perceived, understood, and treated.

    And why? So that clinical medicine can use the language of disease—of diagnosis, prognosis, and treatment—to shape how we understand bodies and ourselves.

    In a nutshell, Foucault is telling us here that clinical medicine's new way of understanding and talking about disease is really just a means to ensure that we all have the same ideas about how bodies are supposed to look, function, and behave.

    And anything that falls too far outside of that idea of "normal" functioning is thought of as pathological or "diseased," in the language and ideology of clinical medicine.

  • Rosemarie Garland-Thomson

    So while prodigious or "monstrous" bodies have always been a focus of human interest, the normal/abnormal dichotomy of the modern mind limits the explanation of differences to pathology. Although the idea of abnormality as an interpretive frame for physical disability displaced such rationales as divine punishment or moral corruption, the dichotomy of normal/abnormal nevertheless devalues disability rather than defining it on its own terms. Like "powerful woman," the term "disabled person" is oxymoronic because "disabled" nullifies the dominant version of personhood expressed in, for example, the Emersonian self-possessed individual.

    Yikes. RGT's said a mouthful. But breathe, Shmoopers. We can do this.

    Basically, what RGT is saying here is that the centuries-old impulse to "explain" disabled bodies based on whatever ideals and values one's culture holds dear is still in effect in our modern world. But instead of explaining disabled bodies in terms of God's judgment or of moral values (in other words, explaining the disabled body as a punishment for sin or bad behavior) our modern world always explains disability in terms of disease, of pathology.

    But here's the problem: even though our modern medicalized culture seems to explain disability through the "objective" lens of science, the reality is that the scientific viewpoint is often just as biased as the older, more moralistic one.

    This is because, according to RGT, we continue to base everything on the normal/abnormal opposition. And, in this framework, "normal" is defined in the way that Ralph Waldo Emerson and others like him defined it—an idea based, as we've already seen, on Enlightenment idea of the autonomous, rational subject.

    And, if you don't fall within an acceptable margin of this idea of the "normal," then you're not only "abnormal" but you're also no longer a "person" in the Enlightenment or Emersonian sense. Instead, you're just an abnormality. You're a pathology.

    Then, when the sense of one's personhood is erased, everything that is unique, identifiable, and individualistic about that person is erased as well. This is why RGT argues that disability nullifies the idea of one's personhood, because once one is labelled "disabled," that is all one is.

    In short, you're either normal or you're abnormal. You're either a "person" or you're a "pathology."

    Need more chocolate, please. We're depressed.

    As scientific explanation eclipsed religious mystery to become the authoritative cultural narrative of modernity, the exceptional body began increasingly to be represented in clinical terms as pathology, and the monstrous body moved from the freak show stage into the medical theater. Thus, even though the discourses of the anomalous body comprise a series of successive reframings within a variety of registers over time, the uneasy human impulse to textualize, to contain, to explain our most unexpected corporeal manifestations to ourselves has remained constant […]

    Although extraordinary bodily forms have always been acknowledged as atypical, the cultural resonances accorded them arise from the historical and intellectual moments in which these bodies are embedded. Because such bodies are rare, unique, material, and confounding of cultural categories, they function as magnets to which culture secures its anxieties, questions, and needs at any given moment […]

    Thus, singular bodies become politicized when culture maps its concerns upon them as meditations on individual as well as national values, identity, and direction.

    Eeek. Who here has a migraine? We do! We do! But as menacing as the quote above may seem, Shmoopers, these are ideas, though expressed in the fancy-schmancy language of the academy, which we're actually already BFFs with.

    Basically, RGT is telling us here that, as we know, our modern medical culture has transformed our understanding of non-normative bodies. Instead of thinking of them as signs of God's anger or of his wonder—as was done in the symbolic era—we now think of these bodies in terms of the medical/scientific language of pathology: of disease, deformity, or injury.

    But here's an added little wrinkle—which we already know about. We think of non-normative bodies in this way not necessarily because that's the "right" way to understand them but because our modern culture tells us and requires us to think of this as the "right way" to view these bodies.

    The Enlightenment-based emphasis on "objective" (and by now we should all be gagging at the term, since, as we've seen, "objective" ain't nothing but a story, not a real thing) observation and rationalism that characterizes our modern world, though, is just another narrative, another way we organize, understand, and try to control our world, just as in the symbolic era, civilizations used stories of wonder, of curses, and of grace to explain and understand the world.

    The non-normative body, in other words, becomes the paper on which our cultural stories are written. Because extraordinary bodies make waves, because they don't conform to standards or expectations, they require us to explain them. If we don't, then they scare the living daylights out of us… because they make us question everything we think we know about our world and ourselves.

    After all, if a body can come into this world or can become something that is so much the opposite of what we expect bodies to look, be, and act like, then what does that mean for the rest of our worldview? What else do we think we know that is actually wrong?

    In order to preserve our sense of stability and identity as a culture and as individuals, RGT tells us, we have to find a way to cope with these disruptive bodies and, like everything else, we do so by building a narrative that supports what we already believe about ourselves and our world.

    And so, in our modern medical culture, in which everything is explained through science, we immediately jump to the story of pathology to explain and tame the extraordinary body and, in the process, to restore our faith in ourselves and our world as predictable and knowable.

    Because there's nothing like uncertainty to eat acid-induced holes in your stomach, are we right?

  • James C. Wilson & Cynthia Lewiecki-Wilson

    Disability provides one of the best examples of how the language of institutional discourse systems determines material practices in ways that can work to the advantage—and disadvantage—of the disabled person. For example, diagnostic labels both predict and determine outcomes by denying or providing medical treatments or educational services.

    The way we understand, relate to, and behave toward a disabled person depends upon the language we use to describe that disability. And that, in our modern medical culture, is based upon what the diagnosis is. That means that, for the disabled person, diagnosis = destiny.

    This is because the diagnosis is part of a larger narrative, a story that describes not only what the disabled body is like and how it should be understood in the present but also what that body is capable of in the future (the prognosis).

    So, for example, if the story of the diagnosis says that the developmentally disabled person is not capable of learning beyond, say, a junior high school level, then s/he may be denied the opportunity to be mainstreamed into high school.

    Likewise, if the diagnostic story says that the disease one has been diagnosed with is terminal, then insurance companies may refuse to cover an expensive surgery to improve one's quality of life.

    Or, if a fetus is diagnosed with a disorder that makes it unlikely that s/he will ever live independently, parents may be encouraged—or feel obligated for the good of the child and/or of society—to terminate the pregnancy.

    In other words, folks, we are the stories we tell. And we're also the stories that are told about us.

  • Lennard Davis

    To understand the disabled body, one must return to the concept of the norm, the normal body. So much of writing about disability has focused on the disabled person as the object of study, just as the study of race has focused on persons of color. But as with recent scholarship on race, which has turned its attention to whiteness, I would like to focus not so much on the construction of disability as on the construction of normalcy. I do this because the "problem" is not the person with disabilities; the problem is the way that normalcy is constructed to create the "problem" of the disabled person.

    We've got our accounts in the wrong bank. We've been focusing in our modern era on the "disabled" person, try to "fix" him or her, when the real problem is how we define and act toward the "normal."

    What is in need of study and of correction, Davis says, is how we build our ideas of what it means to be "normal" in terms of the appearance, behavior, and functioning of our bodies. We do this so that we can construct a sense of ourselves, as a society and as individuals, that is predictable and standard, because that makes us feel safe and gives us a feeling of belonging because our bodies are "like," within an "acceptable" margin, most others.

    But this idea of the norm, Davis says, is not natural; it is something societies create to develop their own identities. In the process, though, they have to exclude the "abnormal" and to label anything or anyone that doesn't fall within a socially acceptable limit of the "norm" as disabled or pathological.

    It's our job, then, to focus on the idea of the normal: where it comes from and how we use it to label, define, and exclude others.

    Long story short, the idea of the "normal" is for suckers.

    Politics have been directed toward making all identities equal under a model of the rights of the dominant, often white, male, "normal" subject. In a dismodernist mode, the ideal is not a hypostatization of the normal (that is, dominant) subject, but aims to create a new category based on the partial, incomplete subject whose realization is not autonomy and independence but dependency and interdependence…

    The dismodernist subject is in fact disabled, only completed by technology and by interventions. Rather than the idea of the complete, independent subject, endowed with rights (which are in actuality conferred by privilege), the dismodernist subject sees that metanarratives are only "socially created" and accepts them as that, gaining help and relying on legislation, law, and technology. It acknowledges the social and the technological to arrive at functionality…

    Impairment is the rule, and normalcy is the fantasy. Dependence is the reality, and independence grandiose thinking. Barrier-free access is the goal... Universal design becomes the template for social and political designs.

    We're all freaks. We've all got funky bodies that misbehave, bodies that look weird, and bodies that need help. The idea of perfect independence is messed up; it's a lie that is used in our modern consumer culture to sell products all so that we can pretend to look, be, and act "normal."

    But the reality is that our ideas of the "normal" are a fantasy that create false divisions between the "normal" and the "abnormal" or the diseased. Instead, what we need is not the idea of the modern subject, based on whackadoodle Enlightenment ideas of the autonomous (independent) self, but a new idea of the dismodern self.

    The dismodern self is the opposite of the modern self. Instead of being built like the modern subject upon the (false!) idea of complete independence and perfect functioning, the dismodern subject recognizes, accepts, and embraces his/her weaknesses, "abnormalities," and dependence.

    The dismodern subject is not built on a distinction between the "normal" and the "abnormal." Instead, the dismodern subject is a universal—it encompasses everybody and every body—because, as we've said time and again, Shmoopers, bodies are super-freaky. All bodies are wounded in some way. Not just because all bodies will become sick or injured at various points in the individual's life, but also because even supposedly "perfectly functioning" bodies require assistance countless of times throughout each and every day.

    Sounds kind of out there, right? Well, think about this: how many miles do you travel each day from your home to work or school? Do you do this on your own two feet? Probably not. To get through the average day, we all need technology and society to help us. When we try to make it from point A to point B, we need the technology of transportation and the social structures of good and accessible roads.

    And that's just an example of getting from place to place, but there are countless more instances that we encounter each and every day that prove to us that our bodies are simply not enough to sustain us alone. The food we need to nourish our bodies is often shipped to us from vast distances. The clothes we wear, likewise, are often manufactured in far-flung corners of the globe.

    To function in the ways that we wish in order to live good, fulfilling lives, we require the intervention of both technology and science: we simply cannot go it alone, no matter what the Enlightenment tells us.

    Davis' Dismodern Subject and Universal Design (UD)

    The dismodern subject, then, recognizes his/her dependence on technology, society, and the people in it. It is humble enough to acknowledge its own limitations and strong enough to work for the kinds of technological and social advances that will ensure that all people, all of those dismodern subjects out there, have equal access to these technological and social resources.

    This is what Universal Design is, for Davis: the development of a society in which the unique needs of individual bodies are provided for, whether this be access to a motorized wheelchair for a quadriplegic or to public transportation for the poor, so that each can move with the same ease through his/her community, school, workplace, and home.

    Additionally, in Universal Design, there's no distinction between "normal" and "special" access. In other words, stairs are not the "normal" way to enter a building while ramps are a "special" access point. Stairs are no more and no less an accommodation than ramps are: universal design shows that without these, without stairs and ramps, neither the "normal" body nor the "disabled" body can enter the building. In other words, when both of these forms of access, stairs and ramps, are removed, one body is just as disabled as the other when it comes to accessing the building.

    So, dismodernism shows us how vulnerable and dependent all our bodies are. Kind of depressing, no doubt, but it's still cool because at least we're all in the same boat. And it's definitely a much easier pill to swallow when we know that we all need each other.

    It would kinda suck (and would be totally wrong) to be told you're the only one in need, as most "disabled" people have across the centuries, right?

  • Simi Linton

    Disability studies has arisen in the past twenty years to focus an organized critique on the constricted, inadequate, and inaccurate conceptualizations of disability that have dominated academic inquiry. Above all, the critique includes a challenge to the notion that disability is primarily a medical category. Consequently, disability studies contests the current academic division of labor in which the study of the phenomenon rests in the specialized applied fields (rehabilitation, special education, health, and so on) and the rest of the academic is largely exempt from meaningful inquiry into the subject of disability. By refusing the medicalization of disability and by reframing disability as a designation having primarily social and political significance, disability studies points to the inadequacy of the entire curriculum with respect to the study of disability.

    Linton here is basically throwing shade on the academy for dropping the ball when it comes to disability studies.

    Sure, she says: the university has been a leader in the decades following the Civil Rights movements when it comes to women's, gender, post-colonial, and racial and ethnic studies. The university has devoted much-needed critical attention to exploring and restoring those voices that have been silenced through political, economic, and cultural oppression.

    But when it comes to disability, she says, the academy in the last twenty years has simply participated in the same marginalization and oppression that society at large has committed against the disabled.

    This has happened, she says, because of the academy's insistence that the study of disability be conducted not by humanities or cultural studies divisions, but by the "applied" fields, such as the fields of health, education, social work, and law.

    Linton, of course, doesn't want to remove disability studies from these fields because work in these divisions has made and continues to make tangible improvements in the lives of disabled people in everything from healthcare accessibility to education and employment opportunities to community access.

    But here's what annoys Linton: when we look at disability only as a subject for these applied fields, then we're really just endorsing the idea that disability is an objective, organic, and medical problem to be "fixed" through these applied sciences.

    The reality is, according to Linton, that disability is also—and maybe above all—cultural. It's the result of how we think and talk about bodies, minds, and people. And it's only when we begin to explore these social and cultural aspects of disability that we can begin to fully understand what it is.

    So, until the academy gets its act together and starts incorporating disabilities studies into humanities divisions, exploring it alongside and with such important fields as feminist studies, African-American studies, ethnic studies, history, psychology, etc., we will never have the kind of understanding we need to ensure justice and equality for people with impairments.

    In other words, step it up, academy (literary theory and cultural studies, especially)! Disability studies needs you and you need it!

    Disabled people, and I will immediately identify myself as one, are a group only recently entering everyday civic life. A host of factors have typically screened us from public view. We have been hidden—whether in the institutions that have confined us, the attics and basements that sheltered our family's shame, the "special" schools and classrooms designed to solve the problems we are thought to represent, or riding in segregated transportation, those "invalid" coaches, that shuttle disabled people from one of those venues to another. The public has gotten so used to these screens that as we are now emerging, upping the ante of the demands for a truly inclusive society, we disrupt the social order. We further confound expectations when we have the temerity to emerge as forthright and resourceful people, nothing like the self-loathing, docile, bitter, or insentient fictional versions of ourselves the public is more used to […] We have come out not with brown woolen lap robes over our withered legs or dark glasses over our pale eyes but in shorts and sandals, in overalls and business suits, dressed for play and work—straightforward, unmasked, and unapologetic.

    Take that, cure/cover/kill! Yeah, we have to quote from Claiming Disability twice, because this passage is just too important not to share, Shmoopers.

    Basically, Linton is asserting that the days of the Ugly Laws and of hiding the disabled in hospitals and special schools and back bedrooms are over.

    Instead of trying to mask disabilities and to segregate those who have them, the disabled are increasingly demanding full access to their communities, workplaces, and schools. And, in so doing, they are living full and fulfilling public lives, while neither denying nor being defined by their disabilities.

    For Linton, the modern age of disability studies is the age in which impairment is simply a fact of the body, an example of the many forms in which bodies come. It is nothing to be ashamed of or restricted by. It simply is the body as the body is.

  • Shelly Lynn Tremain

    [W]hen relations of power are construed as government, that is, the direction of conduct, governmental practices should be understood to include not only state-generated prohibitions and punishments, and global networks of social, economic, and political stratification (the deleterious effects of which congeal disproportionately along disabling, racialized, and gendered lines), but also normalizing technologies facilitate the systematic objectivization of subjects as deaf, criminal, mad, and so on, and techniques of self-improvement and self-transformation such as weight-loss programs and fitness regimes, assertiveness training, Botox injections, breast implants, psychotherapy, and rehabilitation.

    For despite the fact that power appears to be merely repressive, the most effective exercise of power, according to Foucault, consists in guiding the possibilities of conduct and putting in order the possible outcomes. The concealment of these practices, these limits of possible conduct, allows the discursive formulation in which they circulate to be naturalized and legitimized. That is to say, the production of these seeming acts of choice (these limits of possible conduct) on the everyday level of the subject makes possible the consolidation of more hegemonic structures.

    Wow. You know Foucault is crazy smart—and crazy hard—when it takes an encyclopedia and a translator to translate the translator!

    Basically, Tremain is taking Foucault's ideas of biopower and of the creation of the "disciplined" subject and applying them to our modern concept of disability. She says that Foucault has taught us that power operates through forces that govern in the literal sense of government institutions, prisons, schools, legislative bodies, etc., but also in the figurative sense of shaping how citizens think and act.

    In fact, it's the figurative sense of government that is even more important because—unlike prisons and schools and hospitals in which authority figures are enforcing the code of conduct, telling the subject what to do and ensuring that s/he does it—in the figurative sense of government, it's the individual him/herself who is (supposedly) choosing how to behave.

    And here's where it gets even trickier, because this question of choice is what's so slippery. See, Tremain explains here that Foucault is teaching us that the idea of choice is actually false; it's a fiction based on what we have been taught in our society to perceive as normal behavior and belief.

    So, while we think that we're choosing to join a gym, to get a haircut, to go to the doctor, to go to school, etc., we're actually not making a choice at all. Instead, we're just following the scripts that we've been taught since birth because this is what we have learned to think of, unquestioningly, as right, good, and desirable.

    This, for Foucault, is the true exercise of power—not when you can get someone to submit to a person with greater authority, but when you can get the individual him/herself to internalize these ideas of the norm, of the right and proper. Because then the person will self-police and self-discipline, adopting the values and behaviors that support the status quo (and the power structures the status quo is built on).

    Though Foucault had based these ideas primarily around the examples of prisons, schools, and the military, Tremain applies them to disability by showing that Foucault's concepts work even better in regard to disability and the reality that the ways we understand the normal/abnormal, the well/sick, the functional/dysfunctional are all about our modern power structures. We seek medical treatment, therapy, rehabilitation, etc., all to bring ourselves back to "acceptable" limits of the norm.

    We do this to ensure that our bodies, minds, and emotions look and work as they should, playing their assigned parts to make sure our modern world continues to operate smoothly. In other words, our modern ideas of disability are all about making sure bodies fall in line, are quiet and, in Foucault's words, "docile."

    And the best way to do that is to make it look and feel like we're doing the things we do to "tame" our wild bodies because we want to do them, not because we have to.

  • James I. Charlton

    [A] remarkable and unprecedented paradigm shift has recently occurred which represents a historic break with the traditional perception of disability as a sick, abnormal, and pathetic condition. This shift posted a fundamental challenge to the ideological oppression of people with disabilities. For it sees disability as normal, not inferior, and demands self-determination over the resources people with disabilities need.

    Disabled folk: rise up and take control over your own lives! Down with Tiny Tim and Captain Ahab—they make us nauseated!

    Basically, Charlton here is blowing up everything we think we know about disability and in the process destroying thousands of years of stereotypes casting disabled people as pitiful, despairing, dependent, and/or vengeful.

    Charlton is suggesting that disabled people are equal to those with more normative bodies (notice we didn't say "normal" because as we know by now, there's no such thing!), that the disabled are neither below them, requiring paternalistic care, nor above them, as saints and martyrs.

    This sense of equality brings with it a demand for equal rights, the freedom and opportunity for disabled people to take charge of their own lives and to be leaders of the political movements designed to fight for this equality in communities, workplaces, and schools. This is opposed to the old-school way of doing things, in which non-disabled people spoke for and fought on behalf of the disabled. After all, who better than the people affected to know what is needed?

    In short, nothing about us (the disabled), without us (the disabled)!

  • Tom Shakespeare

    The social model so strongly disowns individual and medical approaches, that it risks implying that impairment is not a problem. Whereas other socio-political accounts of disability have developed the important insight that people with impairments are disabled by society as well as by their bodies, the social model suggests that people are disabled by society not by their bodies. Rather than simply opposing medicalization, it can be interpreted as rejecting medical prevention, rehabilitation, or cure of impairment […]

    For individuals with static impairments, which do not degenerate or cause medical complications, it may be possible to regard disability as entirely socially created. For those who have degenerative conditions that may cause premature death, or any condition that involves pain and discomfort, it is harder to ignore the negative aspects of impairment.

    It's not all about the stairs. Basically, Shakespeare is telling us here that society is not all to blame for the challenges faced by disabled people. Even more important, because the social model puts so much emphasis on these societal impacts and causes, it risks hurting the very people it intends to help.

    This happens primarily because the emphasis in the social model on forces outside of the individual's body seems to suggest that issues within the body are not real or important. And by minimizing, rejecting, or downright ignoring the real physical and psychological impacts of disease, injury, or deformity on the person him/herself, you risk alienating those who are fighting for or seeking relief from their conditions through medical means.

    An example would be the case of Christopher Reeve. In 1995, the star of the Superman films of the 1970s and 1980s became a quadriplegic following a horseback-riding accident.

    From then until his death in 2004, Reeve and his wife, Dana, became passionate advocates for research into the treatment and cure of spinal cord injuries. While most within and outside of the disability community applauded his tireless efforts, some, especially those inspired by the social model of disability, objected to what they saw as the representation of Reeve's condition as intolerable.

    They argued, in a nutshell, that instead of devoting all of this time and energy to trying to find a cure for these injuries, the goal should be to make society equally and fully accessible to people with conditions as severe as Reeve's. The problem, they said, was not with the body. It was with society.

    Well, Shakespeare says that's a load of bull. Ask anyone who's endured a life-threatening pressure sore from sitting motionless in a wheelchair. Talk to the child of a parent who no longer recognizes her due to Alzheimer's. Talk to a man who has tried to end his life because of chronic and untreated depression.

    The suffering of those with certain conditions cannot be blamed only on society. And, in fact, social challenges may be the last thought in the minds of those suffering progressive illnesses of the body or the mind. And to dismiss or ignore that very real pain or to discourage—or, worse, to judge—someone for seeking medical relief from it is to be just as discriminatory as any kind of disability prejudice out there. It is to deny the very rights and freedoms the social model is bound to protect.

    In other words, the world of disability isn't nearly so black-and-white as the social model suggests.

    Looks like old Billy Shakespeare isn't the only smart Shakespeare around, huh?

  • Michael Bérubé

    For the moment, our society seems to have achieved a shaky but substantial consensus that it is morally acceptable to screen fetuses for profoundly debilitating conditions, such as Tay-Sachs disease, which involves severe and ceaseless suffering over a nasty, brutish, and short life span, but morally unacceptable to terminate a pregnancy solely with regard to gender. Everything else—Down's syndrome, Huntington's disease, multiple sclerosis, leukemia—falls at various points in the capacious area between, and thus far the people of the United States have apparently decided to leave decisions concerning such conditions up to the people who will be most affected by them. But the Gattaca scenario compels us to ask which "potentially prejudicial conditions" we would allow prospective parents to eliminate if the technology were available.

    That is to say, even in the not-too-distant-future, we might feel a profound moral repugnance at the idea of terminating a pregnancy simply on the basis of the finding that the fetus has a genetic propensity for obesity, myopia, or premature baldness. But if we could select against these features at fertilization, would we do so, and what moral grounds would we offer for refusing to do so and preventing others, by law, from doing so?

    Basically, questions like these are where the social model and the medical model get into a kind of MMA cage match. In other words: this is where it gets ugly.

    Because, if we accept the social model, then we have to embrace all kinds of bodily variation. Our ultimate goal is create a society that is as barrier-free and accepting as possible. Sounds great. In theory.

    But if we spurn all of the advances of medical technology, and we embrace all bodily variations, as the most die-hard social model advocates tell us to do, then we allow suffering when it could have been prevented. We bring into the world children with horrific genetic diseases, such as Tay-Sachs, which could have been detected through a prenatal screening, thus enabling parents to determine if selective abortion is the best alternative to allowing their child to be born with a cruel, terminal disease.

    And yet…

    What if we try to get out of this fix by saying something like, "Okay, we definitely want our world to be varied, filled with all kinds of bodies and minds to make our world more interesting and just plain better. And yet we want to end suffering where we can." It's good, right?

    Well, Bérubé would say maybe not. Because where do we draw the line between what is acceptable and what is not? Do we allow parents to selectively abort due to Down syndrome, but not due to gender? And what happens when technology advances? Statistics show that shorter men have lower incomes and a more challenging time finding a mate than taller ones. Does this mean that we should develop a genetic test to identify and destroy embryos with "short genes"?

    After all, if "quality of life" is the yardstick by which we figure out which embryos and fetuses should be permitted to be born, then who gets to say what "quality of life" means? Who gets to measure what that is and at what point does a life become not worth living?


    These are questions that will only get harder to answer, Bérubé warns us, as technology advances. And the way we answer them will not only determine who gets to live but it will also determine how the lives of those who are carried to term will be experienced.

    After all, imagine the human race without people with Down syndrome. Or without people with congenital deafness. Or without people who, after a long life, succumb to the Alzheimer's gene.

    Our numbers start to get pretty thin once we begin rooting out all those conditions that could be based in the genes.

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