Cripnormativity: How We Think (and Don’t Think) About Disability

Conversations around and representations of disability and illness typically center around what I name cripnormativity. In brief, cripnormativity is what society and its structures — for instance the medical gaze — see as acceptable, “normal” forms of disability.

“Cripnormativity” parallels well-established concepts such as chrononormativity, cisgendernormativity, heteronormativity, and homonormativity.

For example, homonormativity, in part, describes acceptable ways of being queer and how society expects queer people to exist. In the United States, homonormative images typically include able-bodied, conventionally attractive white cisgender men who are interested in culture but also want to get married and have children. Basically, the stereotype of a gay person.

The aforementioned systems of normativity each explicitly embody systems of privilege and the corresponding contexts, Histories, institutions, performativities, and texts that normalize and perpetuate said normativity. These systems of normativity also all compel toxic neoliberal values, including assimilation, conformity, invisibility, exceptionality, predictability, and responsibility.

Importantly, all of these systems are socially constructed, even disability. For instance, some people can’t drive for medical reasons. In Houston, Texas, that would be considered a disability. Driving is effectively compulsory in the Houston area, an area spanning 10,000 square miles and without widespread public transportation. In New York City, where very few drive and where public transportation is the norm, such a person would not even be noticed as a “non-driver,” and therefore would be less “disabled.”

Disabled and ill bodies only ever receive conditional acceptance to the extent that their attitudes, behaviors, and conditions are “cripnormative.” Cripnormativity rewards what is deemed acceptable and thought “cool,” what is not-too-disruptive and not-too-expensive, and who is a “victim” of biology or of a tragic accident but who also takes responsibility.

I’m reminded of an evening when I was reviewing an agenda from the Alvin Community College Board of Regents. One of the items was “dismissal of a tenured professor.” Digging into the agendas and meeting minutes, I learned that this was a professor fighting cancer for longer than what had been initially expected. This professor had exhausted sick leave options. And so, in perfect cripnormative mores, this professor was fired, a termination that would also terminate life-saving health insurance. Disabled and ill individuals can be accepted but only with many buts and many arbitrary time limits.

Cripnormativity insists that there are “proper” and “improper” ways for the crip to exist. Cripnormativity even creates intraminority stress and horizontal hostility among the disabled, whereby disabled people judge other disabled individuals for not “behaving” in the correct way” or for “worsening” their own condition through “poor” choices of what they put in their bodies when in reality they are likely engaged in harm reduction.

Take Greg Abbott, the much loathed, long-time Texas attorney and governor. He has been confined to a wheelchair for almost forty years. He holds far-right political and far-right religious views. His ideologies, and that of other Republicans, actively hurt opportunities for the disabled. Abbott is cripnormative inasmuch as his ideologies make him acceptable to the status quo, he serves as an textbook case of “overcoming the odds,” and he refuses to adopt any kind of crip-positive perspective toward others. He’s disabled without being “disabled.”

People might be afforded the privilege of cripnormativity if they have a condition that is generally heard of, perhaps depression or Muscular dystrophy. Further, society often ignores invisible disabilities — such as depression — not always because such are forgotten but because such are rewarded under cripnormativity. Those who can “manage” or hide chronic pain from migraines or from incisions are also awarded a kind of cripnormativity.

The appearance of assimilation and normalcy is what matters.

Additionally, those who are racialized as white, who are sexed as male, who are gendered as cisgender men, or who are famous and who have non-normative bodies might also fall into frameworks of cripnormativity and its privileges, take Stephen Hawking. Like all types of privilege and oppression, cripnormativity depends on other axes, including class, gender, race.

A much younger me in 1990 before brain surgery and standing by my grandmother and great grandmother.

The following personal examples help further illustrate cripnormativity. In March 2020, I was at Hanger Clinic in Houston, Texas, to be fitted for my new leg brace — a prosthetic device for my right leg that extends from my toes to my knee because of Neurofibromatosis. I’ve had to wear such braces for over twenty years. At one point, the clinician commented, “You’re [in contrast to other patients here] probably someone who doesn’t even consider themselves disabled.” It was meant as a compliment. To say this “compliment” left me baffled and upset is an understatement. As a survivor of six surgeries (thus far) and on-going medical issues and as a researcher, “disabled” and “chronically ill” are only two of my many identifiers I embrace with pride.

And yet, I am an-almost perfect example of cripnormativity and have been privileged.

I was born ill and disabled. I’m a 6’6”, masculine-presenting, white individual with excellent health insurance. I do not need disability income or food stamps for survival, as many disabled people do. I have always had plenty to eat and always had safe water. I have never used tobacco or any illegal substance that others could say contributed to my problems. I don’t drink alcohol. People often say that I have “overcome” and that I am “inspiring” due to my academic success and career as a professor.

Through sheer bodily experience and from negative reactions in the past, I’m generally very good at hiding chronic pain. For many, many years now, I have always and only worn long jeans or pants — never shorts — because if my legs are visible, strangers demand answers. Currently, with some exceptions applicable to those ready to scrutinize as I have an ever-growing number of small tumors called neurofibromas on my arms and face, I am — therefore — not visibly disabled.

I am “invisible” as a disabled person insomuch as my needs are minimal, though through no choice of my own. Although, I do often depend on disabled parking spots. We are all dependent on others, but a manifestation of cripnormativity — except for the very most famous or the wealthiest or the oldest, the exceptional — is being able to bathe, dress, and eat without assistance.

Our culture has trained me to assimilate, to make my very visible physical differences invisible, and thus, further forced cripnormativity onto me.

Due to institutional harassment in public school, I kept all of my learning disabilities and medical problems to myself throughout much of college for fear of what disclosure would lead to. Just as society teaches every one to be cisgender and heterosexual in what can be called compulsory heterosexuality as named by Adrienne Rich, compulsory able-bodiedness as named by Dr. Robert McRuer demands cripnormativity: Rather than a reality of life for everyone, disability is seen as a different kind of existence and is only talked about when permitted by other tenets of cripnormativity. In other words, no one is as able-bodied as they think, and being disabled or ill is not a completely separate experience, but everyone is expected to be as “normal” as possible.

There are, however, limits to my forced “cripnormativity” — unlike breast cancer or Parkinson’s disease, for example, Neurofibromatosis is highly unpredictable, is highly variable, is hardly known, and has miniscule popular funding. Hollywood movies have characters facing various cancers but never Neurofibromatosis, even though it is the most common genetic disorder affecting approximately 1 in 2,500–3,000. If PBS or NPR hosted donation drives for Neurofibromatosis, it could gradually enter cripnormativity.

Cripnormativity controls how we see and think about disability.

In addition to forcing all to “fake wellness,” cripnormativity creates “crip deserts” — borrowing from “food desert” and “education desert” phraseology.

Game shows like Jeopardy! and Wheel of Fortune are prime examples of the crip desert. Contestants never appear in wheelchairs, never have missing arms or legs or fingers, never have visible scars from surgeries or fires, never have assistance pushing buttons or spinning wheels, and never communicate with speaking disabilities. In 2019, Wheel of Fortune — a show that premiered in 1975 — had what was called its first Deaf contestant in a “Best Friends Week” but did not accept the Deaf player’s answers because the game requires players to communicate in “correct” spoken American English. (Wheel of Fortune also does not invite those with strong accents to play its game.) Puzzles on Wheel of Fortune never even include indications that disabled and ill bodies exist. “Cancer Survivor” will never be a puzzle under the Person category.

Because disability is part of the human experience and all bodies operate differently, we know that players often have some forms of some disabilities, but in a perfect manifestation of cripnormativity, these are completely erased.

The therapist’s office is another “crip desert.”

There are simply not enough professionals devoted to mental health. In the entire state of Mississippi, there are 596 therapists for almost 3 million. In Houston, there are only 1,921 therapists for a population of over 2 million, of these most do not take health insurance through no fault of their own (insurance reimbursements are extremely low, for instance) — 694 take BlueCross BlueShield, 579 Cigna, 482 United Health Care.

(All data according to Psychology Today’s registries and current as of December 2020.)

For those who do not have insurance or who cannot find a mental health professional who accepts insurance, sessions typically run from $100-$400. “Self-pay” immediately eliminates many of those who need help the quickest.

Seeing a therapist is increasingly accepted in our society, although more so for white people, and positive representations exist in a growing number of movies and television shows. Thus, seeing — rather being able to see — a therapist provides access to the privilege of cripnormativity, a luxury often available only to those with extra money and extra time. Money can even effectively buy some cripnormativity.

I often hear from students who really want to see a therapist but cannot. Some scholarships or charity clinics are available, but these often force applicants to “perform their poverty” and to “perform their crip-ness.” Potential patients have to prove they are really desperate, when the powers at be — namely the Imperialist White Supremacist Capitalist (Heteronormative Ableist Theistic) Patriarchy as named by Dr. bell hooks — know that we are all trained to resist such disclosure and voluntarily shedding privilege. As stated by Dr. Susan Wendell in The Rejected Body, seeking mental health workers, especially with a psychiatrist, can even be dangerous as they can order that you be institutionalized, completing taking away any opportunities to be cripnormative, to pass as able-bodied.

Educational institutions serve as another location of the crip desert and of the cripnormative.

Schools, including colleges, habitually discriminate against disabled students and employees. These houses of learning also create hostile environments: Crip bodies are often seen as less capable.

Job ads at colleges and universities, in what are clear legal violations, frequently require that professors be able to walk, to see, to hear, and to lift heavy boxes.

A conversation I had with a mentor back in 2007 when I was an undergraduate applying to graduate programs comes to mind. I was sharing my own disabilities with this mentor and asking if I should share those with these programs. She said, “No. Grad school professors won’t follow any accommodations anyway.” In these cases, there is not even toleration for the cripnormative in institutions of higher education. And, given the realities, gave sound advice.

I remember a non-traditional, blind student I had, too. This student certainly had some behavioral issues, such as using inappropriate language in class and talking over me and over other students but was a valued member of the class community. Other students enjoyed their contributions. The Disability Office, however, knew this older student could be, as they put it, disruptive, and this office regularly demanded details about the student’s classroom behavior, even going so far as scheduling a meeting with the Chief Student Affairs Officer that I and others were to attend. This student and I got along fine, and I was never bothered, but they were not the “quiet,” “obedient,” “traditional” cripnormative student expected. #RealCollege students are different.

Cripnormative students in K-12 are able to have the appearance of coping with few or no breaks, with short lunch periods, and with chronic dehydration. Throughout public school we were prohibited from having a bottle of water. The school nurse ensured children would come only if absolutely necessary by yelling regularly. I also recall the teachers who insisted on using a pink whiteboard marker that I couldn’t see, who refused to grant homework extensions after a major surgery, and who said I didn’t really have migraines. Disabled people who can withstand these oppressive goals might be granted cripnormativity.

Cripnormativity is also concerned with maintaining structures as they are and only making some accommodations when needed, not legitimizing crip time and not aiming toward “Universal Design,” where curriculums and classrooms are designed with adaptability and with flexibility and are immediately ready for anyone regardless of how their body and mind operate. Accommodations cripnormative ill and disabled people need for equitable learning are familiar to the disability office, are free or low-cost, are likely to cause no or minimal “disruption,” and are not likely to require additional work for faculty/staff on the rare occasions that accommodations are actually followed.

My hope is that “cripnormativity” will help start new conversations about the specific ways in which disability is and is not accepted and about the forces operating at or just below the surface. Some who have disabilities are welcomed in society and might thrive. Others are not.

Recognizing and challenging the cripnormative helps provide answers and helps chart future opportunities for the expansion of human rights.

Andrew Joseph Pegoda (@AJP_PhD) holds a Ph.D. in History and teaches women’s, gender, and sexuality studies; religious studies; and English at the University of Houston. Previous articles can be found in The Conversation, History News Network, Inside Higher Ed, Time, and The Washington Post, among many others.

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He/They. WGSS, RELS, & ENGL Professor @UHouston FT/NTT. History MA & PhD. @asuEnglish MA in prog. EIC @ConceptionsRev. Disabled w/Neurofibromatosis. Views

The Left Gazette

We strive for in-depth, honest, leftist analyses of philosophical, cultural, and political issues — beyond what is available in mainstream media.