Written by Holly Clay-Buck and Sara N. Beam
Part 1 of 2
[Trigger warning: one non-specific reference to self-harm in paragraph two]
YouTuber and maker Simone Giertz does a STEM-focused series called “Shitty Robots” about building, well, shitty robots, and in a
January 18, 2019, episode called “My brain tumor is back” she discusses the return of her brain tumor and what this news means for her working life. She describes feeling bummed about the uncertainty of her future and about her intellectual and physical limitations, demonstrating a degree of emotional literacy and openness that we admire. In a Reddit
thread about the video, a commenter points out that “The healthy wear a crown only the sick can see.” This metaphor provides a smart reversal of the concept of invisible disabilities—the able-bodied can't see their privilege—but we recognize that it's our job to make them see it. Unfortunately, the aggravating burden of making the invisible visible falls on the people who are emotionally exhausted, sensitive, and
low on spoons. This blog post seeks to do that work for our already-overburdened readers by exploring the chronic anger that comes with chronic health problems. It can be shared as needed.
I (Holly) have a degenerative spinal deformity. While surgery has corrected the worst of the symptoms (for now), I still struggle daily with chronic pain. When I was at the height of my nerve pain, I started hurting myself just for a sense of control and to distract from that particular kind of pain I was feeling all the time. What’s weird is that I didn’t feel sadness or desperation while I was doing it but rage. I was so, so, so angry about everything I couldn’t do or control, but mostly about how I wasn’t allowed to talk about how hard things were. I had to be a ‘good cripple’ with a brave face and strength and it turned into this screaming inside. Since then, I’ve felt chronic anger as a twin to my chronic pain. It’s the background noise of my life. I don’t feel it or notice it most of the time because it’s always there. However, it tints everything else around it, just like the pain does. An exciting romantic tryst is colored by my constant attention to where my neck is. A faculty meeting is an exercise in not screaming “I don’t care about your goddamned textbooks, my everything hurts!”
Academia is especially unforgiving to anger. We are people of cool logic, proof, and reason. There is no place for your tears unless it’s over a moving sonnet, and there’s even less room for your anger unless it’s directed at a major social issue. A huge problem reveals itself; lacking emotional literacy, energy, and an emotionally literate audience, how can we name and express that level of anger? Work culture defines professionalism as neutral, objective, and emotionally-beige. On the other hand, anger is coded as unprofessional, subjective, and emotionally-loud, not to mention tacky, indulgent, distracting, and inconvenient. It’s worth noting that out of fear, sadness, and anger (i.e. the ‘negative’ or undesirable emotions), anger is the one with the worst reputation. Expressing anger makes you the ‘Other’, the subaltern, the “unprofessional” side of the professional/unprofessional binary. This is the very definition of marginalization.
In a January 2019 interview, Lisa Feldman Barrett spoke of emotional literacy and the power of naming emotions. She was discussing “granular emotions.” Rather than just naming the emotion as mad, sad, scared, happy, or jealous, she encouraged listeners to dig deeper and investigate the emotion even further, down to a granular level. What kind of anger is this? What is its specific cause? How could you group or break down different kinds of anger? Part of what we are doing in this article is providing a model for naming emotions at a granular level. Our experiences and those of others illuminate for us that anger, invisibility, and disability are inextricable from each other. In order to take some kind of action rooted in compassion, we offer a strategy to name these types of anger. Part 2 of the series presents the seven types and offers a conclusion.
For the abled and unaware who wear that “crown only the sick can see,” it feels unnatural to critique the environment, the game. Abled and unaware people instead want to critique you (the unable) for not fitting the mold—
you should try harder,
you should not have been born this way,
you are causing trouble, etc. But ACTUALLY it’s the
environment that’s constructed incorrectly/unfairly AND ACTUALLY, if they (the people critiquing you) are succeeding, it’s because they are cheating— they in fact have an unrecognized advantage, even though they may be oblivious to it. Come to think of it, it’s their advantage that needs correcting. We used to think in strictly physical terms when we thought about the disabling features of an ableist society, but now we also think about them in intellectual and emotional terms. A more skillful, more feminist, more aware way of thinking and being is one which always takes accessibility into account. In a world that is not designed with you in mind—a hegemonic, binaristic culture that insists that your choices are between right/winning/male/able/neurotypical/cis/hetero and wrong/losing/female/not-able/neurodiverse/trans/not-hetero—if you are unable, you are losing and you are wrong and you are the problem. In a world that wants to be designed with people in mind—in an egalitarian, inclusive culture that encourages thought and experience beyond two limited, opposing options—if you are unable, the problem is not you. In this type of world, accessibility would be an assumed necessity and the landscape/institutions would likely evolve over time as we become more and more aware of the varieties of human experience, bodies, and perception.
A culture of accessibility is one that is informed about anger, fear and sadness. Emotional literacy is crucial.
So, what is anger, how does it affect labor, how is that effect compounded by accessibility issues, and how can we prepare ourselves and our coworkers to deal with it carefully and most productively? We offer Part 2 of this series as a resource which explores some of these issues and does some of the labor that usually falls to people with disabilities. It is a means to support self-accommodation; something that can be put in the hands of a supervisor or peer, or anyone who wears that invisible crown of health.
About the Authors
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A portrait photo of Holly
Clay-Buck. |
Holly Clay-Buck Grew up in small town Oklahoma. She graduated from Northeastern State University with a BA in English and the University of Tulsa with an MA in English. She is an Assistant Professor and Coordinator of Developmental Studies at Rogers State University. Her academic interests include intersectional disability advocacy, pedagogy, queer issues, and development of popular language. She is the author of How We Write: An Essentials-Only Guide to Composition and multiple articles and presentations focused on disability, collaboration, and developmental studies. Holly is involved in the LGBTQIA+ community, participates in local activism, and takes care of her friends and family.
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| A portrait photo of Sara N. Beam. |
Sara N. Beam’s formative years were split between several small towns, first in southeastern Oklahoma and then in Fort Smith, Arkansas. She graduated from Hendrix College in 2002 with a B.A. degree in English. After moving to Tulsa, she completed the University of Tulsa (TU) English Master’s and Doctoral Degree programs in 2010. She is Applied Assistant Professor of English and Director of the Writing Program at TU. Her academic interests include teaching, written composition, disability studies, women’s and gender studies, visual rhetoric, and childhood studies. Her scholarly work includes co-editing and writing sections of the 2015 book Children’s and Young Adult Books in the College Classroom: Essays on Instructional Methods and the 2019 anthology of Oklahoma women’s personal stories, Voices from the Heartland, Volume II. In the Tulsa community, Sara is a volunteer with the Leukemia and Lymphoma Society and is a board member on the Little Blue House at TU, an interfaith voice for peace and social justice.
