Tuesday, 10 December 2019

The Necessary Labor of Naming and Respecting Chronic Anger

Written by Holly Clay-Buck and Sara N. Beam

Part 2 of 2

As we stated in Part 1, a culture of accessibility is one that is informed about anger, fear and sadness. Emotional literacy is crucial.

Below is a list of types of anger that we’ve experienced directly or heard about from our colleagues.
  1. Screaming to be heard/fighting against the expectation of invisibility

  2. The constant drone of the inconvenience and ignorance inherent to pain and disability isn’t quantifiable, so it’s not allowed to exist among the “elite.” Holly’s physical therapy ends at 10. The faculty meeting is at 12. It’s only an hour’s drive. Logically, she thinks, I can make it. Physically, I will go. Emotionally I resent it, even if it’s a necessary evil. The minutiae of disability is easily overlooked and the constant maintenance chronic illness requires is quickly forgotten when there is no crisis occurring at the present moment.

    There’s been a lot of buzz recently about chronic illness, spoons, and mental fatigue (e.g. difficulty making decisions, paying attention, understanding a process, etc.). The emotional and mental labor of chronic illness and disability are heavy and almost completely invisible. And invisible disabilities come with invisible consequences. There’s something to note about women (e.g. cis women, nonbinary people, genderfluid people, trans women and transfeminine women) being invisible in the first place. In addition, even though they are invisible, their so-called absence of input, attendance, patience, etc. is hypervisible. Essentially they are perceived as a nuisance because they aren't seen to be doing the invisible labor that is expected of them. Here we must also acknowledge KimberlĂ© Crenshaw’s concept of intersectionality; oppression caused by sexism and racism compounds the oppression caused by ableism. The stigma of invisible illness is therefore higher for people from multiple marginalized groups, for example womxn and nonbinary people of color.

  3. Loss of usefulness (strip mining) when usefulness = humanity

  4. You see it in every teacher movie: the truly committed, hopeful, usually white teacher is willing to sacrifice their time, their happiness, their family, and their health to dedicate every last ounce of their energy to their classes. We read “feel good” news stories about people working three jobs to get by, who spend 80 hours a week building businesses, and work never-ending overtime for their companies. The result is that people are expected to sacrifice their physical and mental health to the workplace.

    If admins and colleagues were trained to have realistic expectations about your boundaries and to take you at your word without judgment, then perhaps things would improve. Academia likes to think it’s better than other jobs, but it still relies on “human resources” (a term that makes our skin crawl). It’s still part of an extraction economy, as Instagram philosophers like Queer Appalachia point out to readers, as they connect the dots between strip mining for coal and strip mining bodies for labor until they wear out, sick with illness caused by the nature of the work. You’re never supposed to be angry. When an institution relies on exploitative labor practices, it’s just a matter of time until the system collapses. When you’re expected to happily be exploited, anything that gets in the way of not just doing your basic job but of being “strip mined” ruins everything. It’s very angering that everyone working these jobs and administering programs reliant on adjuncts can see how unsustainable it is, and yet we can’t do anything about it. Workers feel futile and impotent, like failures.

  5. Frustration of not being taken seriously or being minimized

  6. Frustration and irritability is caused by repeatedly having to “come out” as having an invisible illness. In one incident, one of Holly’s colleagues, who is familiar with her condition, cuffed her hard on the back of the neck during a flare. She was in terrible pain because of it, and reacted with a gasp, turning in physically, and shutting down emotionally. Her colleague did not notice for over an hour, then asked her husband if she was okay. So even when you take the risk of disclosing your condition, you are often still not seen.

    Disclosure is in fact a risk. In at-will states, it may be illegal to fire you for being disabled but it is not illegal to fire you for too many absences, not performing the emotional labor of social niceties well enough, having the wrong color hair, or any other excuse they can think of to remove the inconvenience of accommodating you. Therefore, every disclosure is an enormous act of trust, and when you are misunderstood it’s not just annoying, it’s hurtful and frightening. As Holly asks, if my colleague doesn’t even understand how to not physically hurt me, how are they able to protect my job? Just like a careless pat on the back can destroy my night out, a careless word—or the accretion of a hundred separate careless words—has the potential to destroy my career.

  7. Annoyance at microaggressions suggesting your body is an inconvenience

  8. Room temperature, fluorescent lighting, stadium or lecture hall seating—these are all environmental factors that can affect accessibility. To be sighed at, consistently overlooked, or for someone to even “jokingly” suggest that you’re a “princess” —these microaggressions suggest that our bodies are inconvenient, our needs are mere preferences, and our difficulties are faked.

  9. Rage at consistent lack of control or ability to resolve problems

  10. Case in point: two local colleges that rely on adjunct labor for a large majority of the teaching at the institution both had major problems recruiting adjuncts this semester, Spring 2019. They didn’t have enough teachers. They couldn’t get them. They assigned many more classes than typically allowed to several adjuncts, some of whom were verging on full-time status but did not see the benefits. People have figured out that being an adjunct isn’t an “in” at an institution. It’s jumping on a treadmill because they don’t want to “lose an adjunct.” And in no universe is it acceptable to be that dependent on adjuncts.

    When you think about it in this context, these hiring practices and treatment of persons with disabilities of work are obviously unsustainable because strip-mining eventually taps all of the resource. It’s very angering that everyone working these jobs and everyone administering programs reliant on adjuncts can see how unsustainable it is, and that we can’t do anything about it. Workers feel futile and impotent, like failures. A culture of accessibility is one that is informed about anger, fear and sadness. Emotional literacy is crucial.

  11. Disgust at ignorance and cruelty

  12. Most people we work with on a daily basis aren’t outright cruel, but following every semester student evaluations arrive and we have no recourse or ability to defend ourselves against the inevitable, anonymous non-academic complaints from students. For example, a professor we know shared a not uncommon anecdote about a student evaluation comment regarding her pregnancy. Every female professor has a story about a student commenting on her appearance. Professors with disabilities inevitably receive comments calling them absent, lazy, disengaged, etc., no matter what arrangements they make to avoid disrupting the flow of the class. Countless studies have shown that student evaluations are notoriously biased and prejudiced, yet administrators insist we keep them because appeasing students as ‘customers’ takes precedence over faculty mental health.

  13. Fight, flight, or freeze: physical responses to anger — biology is undeniable

  14. Even if you are uncomfortable or unsure in naming emotions, you can at the very least pay attention to what is happening inside your body, physically, in difficult situations. Let’s say your requests for accommodations have been repeatedly ignored or denied, and it’s happened again. Which of the following do you turn to?

    • Fight: use valuable spoons to tell off the ignorer/denier, to argue once more in your defense, to research ADA law AGAIN to make a case AGAIN. Protest from within and without the institution. Build that network, gird your loins, once more into the fray.
    • Flight: leave the room, leave the building, leave the conversation, leave the profession. Anything is better than doing this again. Escape the moment.
    • Freeze: shield up, mask on, don’t move, play dead, shoot out your intestines like a sea cucumber so the predator will be satiated and move on. Brainlock.

    You will probably recognize your own patterns in these descriptions. For me (Sara), option C, freeze, has often been my go-to in times of conflict. I feel anger, and I feel my negative reaction to being angry, and I don’t move. From the outside, a viewer might assume I’m peaceful. In fact I’m frequently praised by coworkers, family, and friends for being “even-tempered” and preternaturally calm. In truth, I’m sometimes dissociating from the moment because I’m stuck in a loop in my head and must write down what is happening to stay in the present (“The Devil’s Race Track,” as Samuel Clemens called it). In a culture that demands women be accommodating, I have developed a defense mechanism of shutting down: it goes something like this—this can’t be happening, this is happening, I hate this, I have no voice, I have no choice, there’s nowhere to run, think of something clever, this can’t be happening, this is happening. In response to this habit, I have learned to turn to my love of and habit of writing, and, when I can’t respond, I record. This strategy helps me comprehend what I’m hearing and feeling, creates a record of the interaction, and gives others in the room a sense of accountability because their words and actions are being documented. Writing gives me power.

    While this list of seven kinds of anger makes no pretense of being all-inclusive, we do hope that it can provide at least a form of vocabulary for beginning the process of naming—and therefore normalizing—the anger we feel (and battle, and ignore, and beat ourselves up over). Heavy should be the head that wears the crown. Crowns imply power and therefore responsibility to others. By naming our unpleasant and inconvenient needs, we can shift at least some of the burden to those who can shoulder it.

About the Authors

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.

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.

Sunday, 24 November 2019

The Necessary Labor of Naming and Respecting Chronic Anger

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

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.

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.

Sunday, 6 October 2019

Why I can’t write a good personal essay

Written by Sarcozona

We have kindly been given permission to reproduce this from Tenure, She Wrote where you can find the original post.

I haven’t gotten a paycheck since my fellowship ran out in 2017. Funding is scarce for students in the end of their PhDs and scarcer still for international students with disabilities, so it’s not too surprising that I’ve been turned down for everything I’ve applied for.

Almost 5 years ago, I wrote with regard to applications for funding and otherwise:

"Use your story and the survival skills you’ve gained to succeed. I use my escape from rural poverty in personal statements to show that I have incredible drive, creativity, and independence."

But I just can’t do it anymore. I can’t make my life a funny, moving, educational story for someone else to judge.

I used to follow my own advice. I turned the ways in which I don’t fit neatly into the world into pat inspiration porn. I talked about disability, adverse childhood experiences, being queer in a culture of religious fundamentalism, childhood poverty, and sexism as obstacles for me to overcome in a story to inspire funders. And I received fellowships that helped me make it through several years of my PhD, a year and a half of unpaid medical leave and many uncovered medical expenses.

But now I’m too tired, too sad, too angry to twist my life into those kinds of narratives. Those things are structural problems reflecting deep prejudices, oppression, & exploitation. I can’t wrap up the things that hurt me the most in a cute package to make someone feel good about giving me money. Funders seem to want a story where cleverness and elbow grease make light work of disability and other “obstacles.” Ultimately, telling those stories was personally destructive because I kind of came to believe those stories over time. And they aren’t true.

A little smarts and hard work and luck can’t make my chronically ill body “productive.” Even if they did, it would only make it alright for me – and that’s not good or fair. Telling those stories for so long made dealing with the reality of living-with-chronic-illness-under-capitalism/being disabled and past traumas really difficult.

As soon as I decided the problem wasn’t me, but the response of people and systems to me, I stopped getting funding. As Dr. Sara Ahmed says, “when you expose a problem, you pose a problem.”

Chronic migraine isn’t an obstacle for me to overcome. It is an illness that I live with. It hurts, it’s unpredictable, and the symptoms are strange and varied. But most of my difficulties would not exist in a less ableist, racist, sexist, and capitalist society – the poor care, the financial anxiety, the relationship power dynamics.
  • Migraine would have proper research and maybe even treatment – it wouldn’t be ignored, dismissed, and underfunded in large part because it predominantly affects women (and especially poor women).
  • My disease wouldn’t be stigmatized and belittled in popular culture, despite severe migraine being categorized by the WHO in its most severe disability class along with such diseases and conditions as active psychosis, severe depression, quadriplegia, and terminal stage cancer.
  • My disease would be less common – I might not even have developed it – if we had the political will to eliminate poverty and abuse and other such negative “social determinants of health”.
  • Properly funded health care would ensure I received proper disease and pain management, saving me time, money, and suffering. I wouldn’t waste hours every week on insurance paperwork and scheduling with doctors, commuting and waiting at appointments, coordinating my medical care and researching treatments. I would have access to specialists for my disease. My medications would be covered along with physiotherapy and massage. I’d have funded access to therapy to deal with pain that cannot be treated.
  • My PhD wouldn’t have such a short time limit on medical leaves. I wouldn’t lose my income when I am too sick to work. The number of hours I’m able to work wouldn’t determine whether or not I’m allowed to participate in science and research.
  • My ability to financially support myself wouldn’t be tied to the number of hours I’m able to work or widgets I’m able to produce.
  • My immigration status wouldn’t be dependent on my relationship status.
  • I wouldn’t be financially dependent on my partner because I could receive disability benefits while in a relationship with someone who had income. Or I would just get paid for working on my PhD.
  • Disability support would be enough to live on instead of less than the median rent and I’d be eligible for it regardless of my work history and immigration status.
  • I wouldn’t have to rely on friends and family when I’m too sick to care for myself, making it impossible or difficult for me to move or travel – I’d receive funding to employ people (or there would be government aid workers) to help me cook and clean and go about my daily activities.
When I stopped writing narratives that recapitulated ideas about “hard work” and gumption and began talking about structural challenges, about integrating dismantling those structures into my work (or at least getting support to deal with them), I stopped getting funding.

And it didn’t just hurt my funding – my relationship with colleagues has suffered as my attitude has shifted. They like to say things like “you’re so brave” or “it’s so great you always have such a positive attitude” – but when it gets inconvenient or slows me down, if I ask for help advocating for accommodations, or get frustrated with the endless structural barriers my university throws up, they disappear or make excuses or defend those barriers. If I let my good-disabled-person facade drop and express anything but unrelenting cheerfulness, they start pushing me towards the door. It’s not everyone of course, but it’s enough, and it’s people with power, so it matters.

Being “successful” in academia when I’ve faced discrimination and structural barriers has meant parroting oppressive beliefs and mythologies, and I can’t do it anymore.

About the Author

Sarcozona is a graduate student doing research somewhere between ecology and evolution. Their blog chronicles their experiences being sick and queer in academia with lots of asides about the plants, shoes, and books they love. you might also want to follow them on twitter or read their posts on Tenure, She Wrote.