In this essay, I autoethnographically map my experience of pursuing and then denouncing the “religion” of merit into which I was indoctrinated in my white, second-generation immigrant household. I argue that my disabled body is marked as visible through medical discourse that originated within, and is in turn perpetuated by, white patriarchal discourse. This visibility interrupts the power of white invisibility, allowing a means of understanding how white normalness perpetuates a system of merit that rejects all visible, abnormal bodies while offering an unsuccessful pursuit of meritorious invisibility. The normal and invisible system of merit, when exposed, visible, and rejected, can be dismantled.

Merit was the religion of my white, working-class household. My grandparents migrated from Italy and promptly “Americanized” their last names with hopes of becoming “normal” citizens in this country. Their children (my parents), with their inherited white skin and Northshore Bostonian rather than Italian accents, gained all the privileges that come with white invisibility and the potential to achieve merit without scrutiny. They believed in the power of normalization and assimilation. They believed in it without question. A white body is born “culturally invisible” and able to “exert its force on everybody … through invisibility, that everything-ness, that normalizing power.”1 They raised their five white children to believe it too. And they all do. Well, all of them except myself. My white body's invisibility (and potential for perceived merit) was interrupted the moment my cerebral-palsied limbs attempted to stand and walk, perched up on turned-in toes. Cultural readings of my body as “abnormal” are forever entangled in external views of my success. Meritorious bodies do not demand the gaze of others, require perceived accommodations, or consciously center their cultural positionalities to produce good work. Through my disabled body, I could not attain merit without suspicion and interrogation. My body, categorized as “disabled” by medical discourse (and every cultural member that questions my stiff limbs), is solely defined by its lack of normality, by its not meeting the standards for an invisible, culturally powerful body.2 

I, therefore, learned that merit was created by bodies unlike mine for bodies unlike mine. With time, I also learned that merit needs the visible bodies that it both suspects and rejects in order to perpetuate our pursuits or silences. Once denounced, it becomes visible, exposed, and fragile enough to dismantle.

As a performance scholar, I see power in sharing personal stories. Bodies harbor knowledge, and performance allows that knowledge to be visible and accessible across bodies.3 My methodology is rooted in existential phenomenology, grounded in fleshed, embodied, visible lived experience.4 I attend to how I see my body seeing and how I feel it feeling others' reactions. I understand that meaning, identity, and culture emerge through our ongoing interactions and through embodied encounters we make, affirm, resist, and dismantle our shared realities.5 Culture's repeated questioning and rejection of my highly visible body revealed to me the multifaceted nature of privilege. However, one does not need to live through my marginalized body to see that merit is a false religion perpetuated by a white, ableist, heteronormative, masculine culture that entices—but does not make space for—any deviation that may undermine its power. One must just be willing to see what power makes comfortably invisible to those privileged with “normalcy.” My story exposes it. When I was a preschooler, white, patriarchal, ableist medical discourse offered me a doomed path to merit. I gave it up. I no longer seek to fit. I do not pursue unattainable invisibility or pursue the false religion of merit.

A VISIBLE BODY'S PRESCRIPTION FOR FITTING INTO INVISIBILITY

I was four years old when I received an appointment with the leading specialist in pediatric cerebral palsy. The fluorescent light shone off his white bald head like an unbecoming halo. His dry, cold hands pushed my legs until I winced as they locked in spasm. His gentle touch persisted until he evoked pain. This became the familiar touch of the invisible white bodies prescribing the path to merit, the gentle pressure that will inevitably cause harm. He told me to walk to the edge of the room while he watched. I watched him watch me. A white girl learning the power of the white male gaze that constructs medical authority, performing for him in his gleaming white hospital room, aware that my gait was wrong and in need of correction. Afterward, I sat with my legs hanging over the edge of the exam table. I stared at my turned-in feet. The toes of my thick white orthopedic sneakers touched, so jarringly different from the slimmer colorful shoes of my preschool peers. I longed to fit, to not wear shoes that visibly evoked questions before I even stood to walk.

The doctor spoke to my mother, casually resting his hip against the table. Power was comfortable for him. My mother, her posture rigid, was perched on a chair waiting for directions, poised to receive a prescription for me to earn a place to live fully, powerfully invisible in this world:

You need to read to her. She's not retarded, but that is not what people will think when they see her. That's how people are. Cerebral palsy doesn't impact her thinking. She's not slow. She's above average even, but unless she stands out as clearly bright, they'll assume she's not capable. Work with her. Do her physical therapy to keep her lean and fit. Weight is hard on anyone, but it's especially hard for someone like her.

My mother nodded eagerly as he left the room. She believes that white bodies can earn invisibility. She has faith that my gait, like her parents' accents and names, could be erased and replaced, allowing me to gain the power of invisibility. My mother proudly told me throughout my childhood that she was on the “secretarial track” at school, opting out of college prep classes for practical skills early on. As a child she learned to efficiently calculate the sums and transcribe and type the words of the white men she would serve someday, as their attentive and attractive secretary. She worked in an office for two years before quitting to stay home with her babies, but she retained her formal training in absorbing, disseminating, and perpetuating the numbers and words of white men. She was good at it. She understood that my body was not acceptable in its command of others' attention through its abnormality, its need for accommodation because culture was not designed for it, and its positionality that continually attends to how the world interacts with it. The broader society rejects its visible wrongness, but she believed that I could earn a place among the valued if we followed their directions. She enjoys the white, citizen privilege her parents did not have and hoped that with earnest work my white body could also earn the able-bodied privilege others are born with without question. She followed the doctor's prescription carefully.

My mother read the books she purchased for me so often that I could recite them, turning the pages at the correct moment. People thought I could read before kindergarten. A four-year-old who has memorized children's stories “can't possibly be stupid,” our friends, families, and acquaintances assured my mother. We were encouraged. We followed the doctor's orders with initial results. I could be worthy of merit, worthy of acceptance and opportunity.

The state sent a physical therapist to my house. She taught my mother to “do my exercises.” My mother dutifully did them. She pushed against my toes, balancing my legs on her shoulder to push as hard as she could to grant me larger range of motion, if only temporarily. She pushed until she damaged her shoulder and back. She walked behind me through the grocery store during errands; she told me to “walk heel toe.” She thought that if I concentrated hard enough, I could earn invisibility and be worthy of merit. My older brother heard about a professional hockey player who had cerebral palsy. We, my mom and I, just needed to work harder like he did. We never missed my exercises. She walked with me up and down our sidewalks, holding my waist, trying to turn my feet straight. I concentrated hard. I tried to turn my feet the right way. They still faced each other.

MY VISIBLE BODY TRIED AND FAILED TO FIT

I spent the next 20 years trying to become worthy of a place among the meritorious. Although exercises never turned my feet straight, six operations later the doctors finished slicing my flesh, peeling back the skin to get to the muscles and tendons that stiffened with the misfiring signals of my brain. They dropped my heels to the ground. When I was 13, the doctors pried my spasming femur muscles to the side, sawed my bones in half, spun them 30 degrees, and nailed them back together again. Since then, I almost (but do not) pass for normal. My rigid walk is sometimes mistaken for a temporary sprain. I'm strong and fit from years of physical therapy, but I'm still slower, stiffer, more clumsy than “normal” bodies. I never truly became normal/invisible; I only sometimes pass for only temporarily disruptive. After that operation, I shoved my scarred feet into delicate “feminine” shoes to look more like other girls and women. Those shoes rubbed the skin off my spasming toes. I tried buying them bigger, but they fell off with my flat-footed steps. I wore holes in them with my shuffling gait. I replaced them as they wore out prematurely. It was worth the cost. I wanted to fit. Merit takes hard work and persistence.

As a child in a white, homogeneous, working-class town, I believed that my mind, unlike my body, was deserving of merit without adaption. I believed that intellectual ability existed beyond my rejected body. I longed for intellectual spaces and flourished in academic settings. When I was sitting behind a desk, the weight taken off of my feet shoved into shoes that resembled those of my feminine peers, my body was momentarily invisible, basking in the unearned advantages of its whiteness. This continued at the predominantly small, predominantly white college that gave me a full scholarship. As an undergraduate, my role was to understand and apply the ideas of others. I was good at it. My professors urged me to go to graduate school. It was in graduate school, when my role became to join in knowledge production (rather than only consumption), that I understood the power of white invisibility in the system of merit.

I realized that the questions I wanted to ask about humans communicating were inescapably tied to my body's visible experience in the world. I wanted to ask questions that stemmed from how my body evoked the gaze of culture, its movement in need of benevolent accommodation to be included, and its positionality as an origin of inquiry. The questions, like my cerebral-palsied body's presence, were tolerated but not valued.

My white, able-bodied colleagues exalted theories and methodologies that were based on “arguments” detached from the researcher's fleshed experience. They sat in quiet politeness waiting for my disruptive body that had a difficult time getting to the other side of campus for my evening class in the 20 minutes between when my assistantship ended and our evening classes began. They sat with pursed lips and shifting eyes as I asked questions about how authors had ignored the able-bodied gaze in their cultural analyses. I was politely told that “not everything is about ability.” This is a luxury of invisible, scholarly bodies, who can decide when and where it is productive to speak of and about bodies that are perpetually and inescapably visible. The system of merit was obvious to me, and at first, in an effort to fit their standards for merit, I learned statistical analysis and the rhetorical strategies of dead white men. I wrote papers that were cold and disembodied to showcase my ability for detached analysis. These methodologies did not answer my questions about the world or offer insights into how to make it more inclusive for visible bodies. Race and queer theories enabled me to understand the complexity of identity categories that compounded privilege and marginalization. I sought out unassigned disabled voices to inform my inquiry.

My white feminist colleagues were not enthusiastic about my focus on ability. I experienced familiar quiet, uncomfortable politeness. My work was too grounded in personal stories, bodies, and activism instead of “high” theoretical contributions. In my feminist rhetoric graduate course, an accomplished, soft-spoken white woman professor gently corrected my use of the term “disabled,” telling me that the preferred feminist term was “‘differently abled,’ because really, all bodies have ability.” I explained that I did not like that word. My body was not just “different,” it was marginalized, infantilized, and fetishized. I argued that while race and disability had different histories and should not be collapsed, the Western medicalization of bodies emerged through white patriarchy. To say “all bodies had ability” would be like arguing that since all skin has pigment, we're all of color—or because our species originated in Africa, we're all African. While technically true, it ignores a history of marginalization. My body, in its difference, was marked as less-than; the chronic pain, management, and atypicality of my body made the term “disabled” important to my identity. The desire to erase the term illuminated the stigma associated with it rather than resolving it.

I wanted to claim it. I was/am/will be disabled. A white woman student “explained” that I was “sounding angry, which wasn't helpful.” At that moment, the only black woman in the classroom said, “Julie-Ann is angry. And she's tired. Those of us that have to debate with you about how we would like you to refer to our bodies, are angry and tired.” She smiled thinly at me. I smiled back. Both of our visible bodies were disciplined by the invisibility of the dominant academic body. She could access her ability privilege as I could access my white privilege. Living through visible bodies made it easier to see ourselves seeing each other. On that one day in the semester when we exclusively focused on gender, power, and privilege, we spent the time patiently explaining to the other white, able-bodied women around the table why their most comfortable language and categorization of us was not helpful, and how the “foundational” theories of feminism did not include our lived experiences. Like the narrow-toed boots I was forced to wear, which rubbed my spasming toes raw in an effort to look more professional, I did not easily fit into the system of merit designed by and for invisible bodies.

This divide has persisted throughout my career. The communication scholars who have embraced me with collaborative opportunities are queer, persons of color, or those living through some form of intersectional marginalization. They value studying the lived experiences of marginalized bodies to make the world more inclusive. These visible scholars have become my academic people. My presence at panels with critical scholars who do not interrogate their ability privilege results in familiar uncomfortable, exchanged glances at my questions. I keep asking them.

I EMBRACED VISIBILITY AND STOPPED TRYING TO FIT

I no longer wear shoes that hurt my feet. I wear sturdy shoes with thick soles and wide toe boxes that allow for my spasms. Colleagues ask about them with tones that slightly veil their critiques of my professional wardrobe. I wear them anyway. I stopped wearing shoes that hurt around the time that I stopped demonstrating my ability to conduct disembodied, mainstream analyses and unapologetically embraced my academic identity as a “disabled performance voice” without a need to explain why I do not study “more mainstream” topics.

Now that I have gained the privilege of tenured and full professor, my colleagues are increasingly vocal about their skepticism of my work. I hear secondhand that while I'm productive, my methodology is flawed, easier, and too focused on the personal instead of the quantifiable truth or detached rhetorical reason. I'm less welcomed in these circles as I advocate for scholars, professors, and leaders who are doing work that they find uncomfortable. A fraction of my colleagues will stop talking abruptly as I arrive into professional spaces. Paternalistic white voices warn me that I'm too vocal when it comes to issues of equity, that I'm going to lose opportunities and be labeled “angry” and a “liability.” They try to make me a believer in merit, but I remember the painful push of the white male doctor's hands decades ago, and while my white, almost-normative body seems like one that could be tricked, I pursued the false religion of merit for decades. I denounced my faith. I can't be reconverted. My disabled body disrupts the power of invisibility. I know that bodies matter. They all matter all of the time. Invisibility is a mirage. Being visible taught me to watch the dominant culture watch me, and I see clearly how whiteness, ability, masculinity, thinness, and heteronormativity offer unearned advantages. I've already learned the system of merit was designed to convince marginalized bodies that we present a visible disruption to apologetically manage. Like the shoes I once desired, scholars asking the questions that make the dominant academic culture uncomfortable never really fit the system of merit.

To fit is to be invisible and to not expose the power of invisibility. Tricking visible bodies into trying to fit is the only hope of preserving merit's invisible power. If we think there could be space for the visible bodies in the invisible system, if we swallow the pain of not fitting, we can be distracted from transformative scholarship and practice that exposes merit for the false religion it always has been. Enough of us see and feel the fragility of merit. We have abandoned this false religion. The system and the bodies it benefits are as culturally visible as the bodies it marginalizes. Its power is exposed and challenged. We are not trying to fit, and we have the momentum to dismantle the system and build an inclusive alternative.

NOTES

NOTES
1.
Thomas K. Nakayama and Robert L. Krizek, “Whiteness: A Strategic Rhetoric,” Quarterly Journal of Speech, 81, no. 3 (1995): 292.
2.
Rosemary Garland Thomson, Extraordinary Bodies: Figuring Disability in American Culture and Literature, 20th anniversary ed. (New York: Columbia University Press, 1997).
3.
Joni L. Jones, “Performance and Ethnography, Performing Ethnography, Performance Ethnography,” in Sage Handbook of Performance Studies, ed. D. Soyini Madison and Judith Hamera (Thousand Oaks, CA: Sage, 2006), 339–46
4.
Maurice Merleau-Ponty, Phenomenology of Perception, trans. Donald A. Landes (London: Routledge, 1964).
5.
Kristin M. Langellier and Eric E. Peterson, Storytelling in Daily Life: Performing Narrative (Philadelphia, PA: Temple University Press, 2004).