How Society's Obsession With 'Fixing' Disabilities Causes Harm

Being “normal” is a good thing. If you told this to anyone, be it a high school student applying to college, a worker vying for a promotion, or a Nobel Peace Prize winner accepting an award, you would probably be seen as odd, or maybe even laughed at. As a whole, individuals are told to excel in their lives in order to make them mean something. Society is the culprit of this, and if we look back on what society has dictated to us in the past, we can see that cultural expectations are fickle creatures — one would not, for example, go out in public today wearing a pink poodle skirt and expect to be seen as the height of fashion, since we, as a society, have decided that poodle skirts are no longer en vogue. But what happens, then, if the deviation from society’s norms is not a voluntary action, but is instead an unchangeable aspect of your identity?

You can’t just change the color of your skin or the dis/ability of your body. If you live outside the “hegemony of normalcy,” as described in Lennard J. Davis’ piece “Constructing Normalcy: The Bell Curve, the Novel, and the Invention of the Disabled Body in the Nineteenth Century,” you will face both pressure and oppression from society to conform. Davis tackles the concept of societal norms, eugenics, and how the Other is treated in literature. While we would like to think of eugenics as something firmly in the past, many disabled people face a version of it as soon as they step out their front door.

Disabled people are often confronted with the question of a “cure,” in a twisted form of modern eugenics. This concept is discussed in Wendy Lu’s article “Disabled People Don’t Need to Be Fixed — We Need a Cure for Ableism.” Lu, a disabled writer, delves into “cure-focused narratives” and why they are both harmful to the disabled community and a product of the systemic ableism we as a society have. In this essay, I wish to explore Davis’ concept of the “hegemony of normalcy” in relation to Lu’s discussion of society’s fixation on fixes for disability.

Davis discusses norms and normalcy throughout his piece in the context of statistics and literature. It is the former that is being alluded to in this quote: “The concept of a norm … implies that the majority of the population must or should somehow be part of the norm.” Unless you can check off all of the imaginary boxes that dictate being “normal,” you will feel the consequences of being an outsider. It’s essential not to lose sight of the fact that norms are concepts: they are social constructions, established values put in place, and very often are exclusive and hard to attain. Norms are typically inherited from previous generations and are slow to change. They aren’t questioned by the majority who don’t suffer from being an Other and, in fact, many people don’t even consciously realize norms exist in order to be questioned. They are just accepted, part of the landscape of our culture.

Let us think of the hegemony of normalcy as a spider web made up of many individual strands of norms: in order to appreciate the trap of the web, it must be looked at from a distance to see the entirety of the oppression those caught like flies within it endure. It’s easier to only see a single spun strand of normalcy instead of the extent of the vast web, the collection of norms we as a society have. This is the problem at the heart of tackling the hegemony of normalcy, since most people don’t even recognize it exists, which is why it is nearly impossible to form a coalition in order to dismantle it.

Davis discusses statistics in his piece and how “with the concept of a norm comes the concept of deviations or extremes. When we think of bodies, in a society where the concept of the norm is operative, then people with disabilities will be thought of as deviants.” If we were talking about numbers, deviations wouldn’t be inherently negative. But the norm we are discussing is not that of a bell curve — it is being applied to human beings. In fact, the mathematical term “deviant” gains a sinister undertone when we apply it to humans: to deviate means to stray or to become wayward from the majority. Perhaps the word “normal” in and of itself doesn’t carry moral baggage, but when it’s used in contrast with “deviant” it can be seen in a wholly different and usually negative light. “Normal” becomes “right” and everything else becomes “wrong.” That idea is problematic to say the least. Why is it that the Other should change and not society itself?

The answer to that question lies in the fact that the oppressors are the ones in charge. Davis talks about why it is that the majority is swayed to the side of this Orwellian notion, explaining that “an important consequence of the idea of the norm is that it divides the total population into standard and nonstandard subpopulations. The next step in conceiving of the population as norm and non-norm is for the state to attempt to norm the nonstandard.” This causes a vicious cycle, where the Other is seen as “deviant,” society tries to correct the Other, and then either the Other is normed or is unable to be. If the “deviant” is corrected, the cycle resets and continues ad infinitum to address the next substandard subpopulation. If the Other cannot be normed, they will suffer the consequences of nonconformity.

For a disabled person, the consequences include constant questions about their disability, shaming the individual for having a disability, and limiting accessibility in their environment. Davis refers to “the state” as the ones in charge of the norming, with the implication of “nonstandard” people running around flaunting their “deviancy” as being an apocalyptic idea, leading to the fear of the disintegration of society itself. Davis’ piece lays out first the concept of a norm, then the creation of an Other, and, finally, society’s attempt to correct the Other. The pervasive yet invisible forces of the hegemony of normalcy try to eliminate the Other, leading to a hidden dystopian underbelly disguised as a utopian idea of a more beneficial society for all, because how could fixing something that’s broken be bad? Well, it becomes bad when that “something” is a person, and thus the proposed utopia becomes an idea that, in reality, is only better for the privileged norm.

Turning to Lu’s article, she recognizes the problem with being the Other in this equation as well. When talking to Eli Clare, a disabled author, they discuss how people outside the norm are punished: “To be ‘normal’ is hard to define and impossible to catch, and it has so much power because disabled people are so often considered ‘abnormal’ and defective … Once a community of people is deemed defective, two things are most likely: Either they’re targets for disposal or targeted for cure.” Clare asserts that normalcy is unable to be pinned down, both in the sense of what it means and because of the fact that those who are not normal are endlessly chasing after the unattainable title.

The word choice of “defective” is important to consider here, as it suggests the eugenicist idea that people who aren’t normal should be sent back to the factory for repairs. Like Clare says, the “defective” community, once they have been sent back to the metaphorical factory, will be removed from society — perhaps socially by their neighbors or, in worst cases, placed in institutions. If a community is “targeted for [a] cure,” there will be relentless societal pressure to take that cure.

Clare’s insights into how the definition of normalcy perpetually remains on the tip of our tongues and the “my way or the highway” attitude taken up by the majority are similar to Davis’ ideas, despite the fact there is a 23-year gap between the two pieces. This shows the power and the potency of the hegemony of normalcy in our society. At the time Davis’ piece was written, the ADA was only five years old, so the expectation that attitudes towards disabled people would change was still reasonable and something to hope for because the legislation was so new. However, as we see in Lu’s more recent article, despite there being a vocal community of disabled activists, the idea of fixing the disabled population still gets floated with alarming frequency. We may be seen as equal in the eyes of the law, but the society we live in lags behind, or simply doesn’t share that point of view.

In particular, the push for cures highlights the harmful effects of the hegemony of normalcy — and the shove to make everyone a part of it — upon the individual: “When cure functions as a type of social control or pressure to eradicate disability communities, it becomes the opposite of liberation. Especially for people whose disabilities don’t have cures, this mindset can make them feel trapped or inadequate.” Obviously, taking into account that cures for pandemic conditions are a good thing, what Lu is talking about here is the underlying eugenic belief that disabilities are inherently bad and should therefore be erased. It’s not free will if the choice has been made for you by society’s ideology.

When cures are used as a means of controlling the disability community, that’s where the problem begins. There is never any consideration on the part of the non-disabled person as to whether a fix is wanted for a disabled individual, because the idea of not wanting to fit into the norm is unfathomable for most. There is also never any question about whether society is the thing that needs readjusting. Why should an entire group of people change to better fit the mold people are supposed to be poured into, rather than changing the shape of the mold itself?

Alice Wong, the founder of the Disability Visibility Project, is cited in Lu’s piece when the phenomenon of cures is being discussed. “Cure-focused ableism, like other forms of discrimination, exists because society is structured to uphold people with privilege and deprive others of power.” The concept of “cure-focused ableism” as a particular kind of ableism is worth thinking about, as it is the most innocuous form, in addition to the fact that it is sometimes done with good intentions. For example, myself and many other disabled people are told to try supplements or do yoga, as if popping a vitamin or doing sun salutations would be a panacea! Able-bodied people are frequently uncomfortable around those who are disabled, which causes them to offer unsolicited and often ignorant advice. The discomfort on the part of the able-bodied person stems from the value society places on normalcy.

While “cure-focused ableism” might not be noticeable or seem particularly insidious, it is still just as much of a dangerous form of discrimination as more blatantly prejudiced actions. Someone would likely be reprimanded for using a slur against a person using a wheelchair, but a comment about how that same disabled person has to try useless and unproven treatments for their condition would likely go unchecked.

Both Davis and Lu’s pieces have overt mentions of the existence of norms and Others with an undertone of the consistent need by society to reinforce normalcy. The aspect of the majority ruling minorities is something that is abundantly clear in our society; so long as you are an Other, you will face oppression. Why, then, if the majority is such a powerful and immovable force, is there a need to constantly set and inflict norms upon society at large? In my opinion, this has to do with the fragile nature of normalcy, which may seem like an oxymoronic idea after I’ve spent this entire essay discussing the concept of the hegemony. Davis touches upon this, saying, “Normalcy must constantly be enforced in public venues, must always be creating and bolstering its image by processing, comparing, constructing, deconstructing images of normalcy and the abnormal.” His use of the words “comparing” and “deconstructing” are worth noting here, as this ties into Lu’s idea that an able-bodied person, upon coming across a disabled individual, has a knee-jerk reaction of offering up a cure.

I spoke earlier about this reaction being a product of discomfort, but what able-bodied people don’t seem to realize is that just because an obviously disabled person dares to exist, this doesn’t mean they are asking for a fix for their current situation. Let us take the example of Stephen Hawking, whom upon his death was praised for all of the things he accomplished despite his disability, despite “being ‘confined to a wheelchair,’ even though wheelchairs allow many disabled users to be mobile, independent and active members of their communities.”

The instance of Hawking’s disability being seen as a crutch — pun absolutely intended — to his intellectual work, despite his disability seeming to have no actual impact upon it, is just another example of the constructed idea of normalcy tripping over itself in order to explain why being disabled is still “deviant,” no matter how many awards and honors Hawking received in his lifetime. To put it simply: if one had gone up to Stephen Hawking and asked if he wanted to be fixed, there would likely have been confusion in the minds of the able-bodied. After all, a brilliant person such as the great Stephen Hawking isn’t broken! Yes, society may wrongly pity the man for the so-called “confinement” to his wheelchair, but that same wheelchair allowed him to continue working… and this is where the fragility of normalcy becomes apparent.

Normalcy is inherently and undeniably fragile if it constantly has to be enforced. The fallacy of the hegemony of normalcy may be clearest in the so-called exceptions like Hawking (a person of note and renown) but this concept should then be applied to the rest of the disabled community. If only disabled people were given equal opportunities, how many more of us could be more active members of society?

For most able-bodied people, the barriers that have been intentionally put into place by society are not easily recognized. An able-bodied person wouldn’t notice if there were no available accessible parking spots or elevators since they aren’t the target audience for such things. Able-bodied people, those that don’t deviate from society’s cookie-cutter body and capacity to function, don’t see the need for things that make society more accessible to disabled people as they don’t experience the oppression of the literal obstacles disabled people face, such as the inability to enter a building due to the lack of a wheelchair ramp. It doesn’t affect them, so they don’t notice it, and thus they don’t care about it.

Disabled people being denied entry to one building would be problematic, but disabled people being denied entry into many buildings — literal paths of life — is systematic. While “normalcy has to protect itself by looking into the maw of disability and then recovering from that glance,” disabled people are just fighting for an accessible seat at the table. The “recovery” from gazing at disability comes when the hegemony of normalcy shields itself from the horror of deviancy by trying to shift the deviants into the norm through cures or fixes. However, since not all disabled people can or wish to be fixed, society places obstacles to prevent them from integrating into society in a fulfilling and equal way. The idea that adding a ramp or an elevator to a building is an insurmountable task is laughable in the current frame of mind that society has, with the general air of political correctness and performative inclusivity. But if we take a macroscopic perspective, the real task we should strive to accomplish is what Lu proposed: curing ableism, not curing disabled people.

So, where does this leave us? We have this hegemony of normalcy that is only powerful because no one attempts to dismantle it. As a consequence, we have rampant ableism to perpetuate the norms that exist to protect those privileged enough to fit in and be “normal.” Just sounding the alarm Davis pulled all those years ago about the existence of this hegemony of normalcy doesn’t mean that everything is fixed, or even has the ability to ever truly be fixed to the point where it doesn’t harm people. But we can dream: “In a perfectly accessible world where all disabled people are fully included in society and treated equitably, the pressure to conform likely wouldn’t exist.”

If there was some way to lessen the stranglehold of the hegemony of normalcy, I believe Lu is correct in thinking disabled people wouldn’t be seen as Other. Cures and fixes could be abandoned as ramps and elevators are constructed. Stares on the street and questions of “have you tried…?” would be replaced by acceptance and inclusivity as our thinking shifted away from the norms we inherited and perpetuated. If we can frame cures as the bettering of an already fulfilling life instead of the eugenic elimination of disabled people, that would be the ideal. When treatments like surgery or medicine become elective options instead of forced fixes, that is when the hegemony of normalcy no longer reigns supreme.

Perhaps an ideological shift can happen in our lifetime; after all, the swift switch to online learning in the midst of this global pandemic shows us that we as a society have the capacity to accommodate and make the world more accessible. This change in thinking will come slowly and painfully, but it can happen for the disabled community, who remain the largest minority. But, until then… could you stop asking me if I’ve tried essential oils? Thanks.