A MODEL OF CRIPNORMATIVITY (OR, IS THE CRIP BODY ACCEPTED?)
I am mostly what society deems an acceptable crip. I was born with neurofibromatosis almost forty years ago. Except for the large horseshoe-shaped scar above my right ear from brain surgery in 1991, I am not immediately visible as someone disabled and facing countless medical issues. Thanks to a custom brace that covers my entire right leg below the knee (that is almost always covered by jeans), I can frequently walk without pain. I can also work full time without issue, and I am as addicted to shopping online for my cats as the next person.
On the other hand, being a queer crip and having medical problems that frequently defy expectations and a condition that few providers know about makes me far a less acceptable crip. Migraines and chronic pain certainly do not help. And being one who has complained and even written articles about unsatisfactory, even abusive, care makes me a flat-out unacceptable crip.
Based on decades of experience and observation, I first wrote about “cripnormativity” in 2021 to provide a framework for thinking about the extent to which disabilities and illnesses and those—the crip—who live with them might be accepted or rejected by society. Cripnormativity, much like heteronormativity, is created, conferred, and perpetuated by structures larger than any individual. This essay provides an illustration of cripnormativity through the lens of five categories: aesthetics, knowledge, responsibility, assimilation, design.
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Aesthetics.
Following the Americans with Disability Act of 1990, most public spaces have already been at least somewhat modified (often to the minimum degree permissible) to accommodate the crip. Accessible parking, ramps, elevators, and wider doorways are far more common than they once were. Still, architects have yet to fully include us in their design plans. Consider how often the elevator is in a hidden or out-of-the-way location. Thus, society almost automatically declines at least some level of acceptance—cripnormativity—to the crip, especially to those of us with physical or visual disabilities who rely on modifications to the natural or built environment.
Society generally declines additional degrees of cripnormativity to crip bodies needing a visible accessibility aid compared to an aid covered with clothing. People can generally see wheelchairs, canes, and walkers. Without even asking, people will commonly try to move our aids—extensions of the crip body—to some location deemed “out of the way.”
Hearing aids, scars, and missing or prosthetic arms or legs are all also disruptive to the ideals of beauty ingrained in society. (And remember, disabled characters in fiction are often villains. Do you remember Scar in The Lion King?) Beauty includes sound expectations. Noises from a motorized wheelchair or breathing machine or vocalized stereotypies from those with any number of disabilities and illnesses decrease cripnormativity.
And speaking of sounds and utterances, the “good” crip generally do not talk about their lives (read: complain) and are rewarded with more cripnormativity. Exceptions are often provided for those who make themselves the butt of jokes.
Knowledge.
Cripnormativity is also dependent on who holds knowledge and how much about the given disability or illness. People are more comfortable with what they are already familiar with. Breast cancer is more cripnormative than neurofibromatosis because we are all familiar with fundraisers for breast cancer and “wear pink” campaigns. The condition of muscular dystrophy (but not necessarily the actual person) is more cripnormative than chronic obstructive pulmonary disease because of the long running, (in)famous Jerry Lewis Telethon.
At the same time, headlines about, say, a local celebrity fighting brain cancer will get more clicks than headlines about crip kids being denied accommodations at school and will inevitably teach the public at least a tad about brain cancer. What makes a good or catchy story, especially one that perpetuates notions of the super crip, determines the public’s baseline of knowledge.
What medical professionals know or not also impacts cripnormativity. Nurses tend to dislike, ignore, and disbelieve symptoms that do not add up in expected or predictable ways. Physicians tend to treat conditions they know less about as more suspicious. Insurance companies want everything filed within their preset codes and any prescribed medications or procedures to follow their “cost saving” expectations, regardless of our thoughts.
We are often very familiar with our body and its—lack of—rhyme and reason. It is not unusual for the crip to know more about their condition or the latest research than their healthcare providers. Cripnormativity here is dependent on not being labeled “difficult.” Chronically ill patients learn that sometimes “playing ignorant” is the only way to be conditionally accepted and treated.
Responsibility.
The crip deemed “responsible” are more cripnormative. In a highly individualistic society like ours where welfare programs are criticized because people “should have taken responsibility,” considering relationships between cripnormativity, blame, and the acceptability or unacceptability of disability and illness is only more important.
Society tends to grant someone born with a condition more cripnormativity than someone who acquires a condition later in life. For example, people accept a baby born with spina bifida more than someone with a cancer diagnosis linked to previous drug use: One had no control, one was “reckless”—a “bad” crip. A soldier who loses an arm in war (especially one popular among the public) is more cripnormative than an intoxicated teenager who “carelessly” loses an arm. Consider how different their stories will be and how these stories will be received. And temporary disabilities from injuries are more acceptable than permanent ones.
Visibility and responsibility are connected. With the proper equipment you can objectively see a collapsed lung or tumor. You cannot see my headache. The medical problem that can be validated—and “fixed”—is more cripnormative. Someone living on crip time and working “too slow” because of an invisible illness is “irresponsible” and thus less cripnormative. At the same time, depression—often invisible and disguised through public presentations of busyness or happiness—is more “responsible” and cripnormative than, say, a paralyzed face.
Age factors in, too. Society does not question the older person who faces multiple diagnoses and takes many medications. Elders are automatically more cripnormative and responsible—for making it that far in life—than a younger person expected to be in better health. And race matters. Society is less accepting of disability in a tall, fit white man than in an economically deprived Person of Color who is expected to adhere to respectability politics and even fail by societal design.
Assimilation.
The crip who can and do minimize their differences with the able-bodied, healthy, and privileged are more cripnormative. Any accommodations we have are not deemed disruptive and help us blend into the crowd. “Passing” (e.g., having a haircut that renders a hearing aid invisible) and “defying the odds” (e.g., getting a doctorate when providers said it would be impossible) are the societal gold standards of being accepted under Imperialist White Supremacist Capitalist Heteronormative Ableist Theistic Patriarchy, a concept coined by the late Dr. bell hooks—“heteronormative,” “ableist,” and “theistic” being my additions.
Degrees of cripnormativity are also often available to the crip who have some identity variables that are privileged: Christian, cisgender, citizen, conventionally attractive, financial stability, heterosexual, male, wealthy, white. Having or finding proximity to such privileged systems through a parent or spouse—and the resulting assimilation with the status quo—can also curry favor for the disabled and ill. Some cripnormativity is also offered to those who assimilate with the values of the ultra-wealthy and even abandon any notion of solidarity with other disabled and ill people.
Capitalism, assimilation, and cripnormativity have special connections for us. The crips frequently have limited income due to reduced capacities to work forty or more hours weekly, due to ableist employers who discriminate by only hiring the able-bodied, due to laws that allow employers to legally pay some disabled workers wages far below minimum wage, or, if receiving public assistance, due to possible restrictions on how the money can be used. Therefore, being able to assimilate with capitalist expectations of “producing” and “spending” is highly valued and allows some crips to effectively buy some cripnormativity.
Design.
How specific spaces, locations, and devices are constructed and function impacts cripnormativity.
Even having shelter suggests a degree of cripnormativity given the high number of unhoused people among the disabled or ill. The crip who do not need—or who already have—a large built-in, walk-in, or roll-in shower are more cripnormative than if assistance bathing is needed simply due to architectural design. The same idea applies to the width of doorways and to any stairs getting into or moving around said housing. Some of us need lower kitchen counters because of dwarfism, higher kitchen counters because of back problems, or a more predictable and familiar home layout because of low vision.
Buildings with (working!) elevators or (appropriately designed!) ramps and large spaces with flexible seating are more accessible and thus provide some situational cripnormativity. Airplanes, cars, busses, and vans appropriate for the disabled and ill allow for some cripnormativity, and we should remember that what is appropriate for the immunocompromised—perhaps improved air quality and mask requirements—may be different from what is appropriate for the wheelchair user—appropriate ramps or lifts and wheelchair securement systems probably being needed. Walkable cities are increasingly popular for the greenery and scenery they promise but leave those of us who cannot walk with fewer options and thus less cripnormativity.
Do not forget contemporary technology. Living increasingly means using an app or website on your phone or computer to do anything. Designed for those with normative dexterity, hearing, and vision, such technologies often exclude the crip. Those of us able to use or make do with the defaults or whatever second-tier accessibility options might be offered are more cripnormative.
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This model of cripnormativity aims to help underscore societal dynamics related to the crip and our acceptance and rejection. Of course, it is not a simple equation or binary. The extent to which we are accepted will differ according to where we are, to who is around us, and to the day. And the disabled and ill will be more cripnormative in some ways and far less in others. I tend to imagine a scatterplot—where the x-axis has the variables of interacting with others and the y-axis marks levels of acceptance.
A synthesis and analysis based on living in the United States and thinking in the written and spoken language of present-day English, this model should not be taken to say how the crip should live. In a friendly society, the crip would be unconditionally accepted and would never have to strategically “play the game” or struggle to navigate the systems of rejection and acceptance that create the structures of cripnormativity.
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About the Author
Andrew Joseph Pegoda (he/they) holds a doctorate, two master’s degrees, and two undergraduate degrees, as well as having additional graduate training in bioethics and in pedagogy. He is an educator and author with twenty years of experience exploring human rights through the intersections of history, historical memory, minorities, fiction, and pedagogy. At the University of Houston, he teaches women’s studies, queer studies, crip studies, film studies, and religious studies. His current writings focus mostly on issues of medicine, health, and disability. He takes around two dozen medications and has had three major surgeries, three minor surgeries, and countless MRIs, X-Rays, and CAT Scans since birth in 1986. Visit him online at https://andrewpegoda.com.