Sunday, 16 February 2020

An Unreliable Mind: Being OCD in the Academy

Written by Clare Griffin 
I am writing the first draft of this on a flight home, feeling emotional after a crappy connection. Is it a good idea to start writing this now? Is it a good idea to write it at all? To publish it, where anyone could read it? What do I hope to achieve by this? How much will it hurt me to publish it? How much good could it possibly do? For me, or for anyone else? Do I mean everything I am saying? And will anyone believe it?
This, and a thousand other worries come to me on bad days, when the OCD I was diagnosed with a few years ago takes over. At some points in my life, all I had were bad days. Now, I have a lot of good days, and still some bad days, and the bad is manageably bad.
After much treatment, and much help, life is easier. Easier is not the same as easy. But some days, easier is everything.
My OCD rewrites the world for me. It pushes me into false certainties where only uncertainties lie. If a friend doesn’t reply to me, they must certainly hate me; yet I can only be uncertain as to the motivations of others. My mind can be unreliable, yet my work, my career, my life, rely on my mind and on my judgement. How can an unreliable mind be an academic mind? If I can’t always trust my judgement, how can anyone else?
My OCD gets me praise. If I have scrutinised every detail of a piece of work or of an event, my OCD will still have me check again, and again, and again, and again. I am early for deadlines, always there for meetings and the most reliable collaborator – until I’m not. Until the compulsion that drives me to check, and recheck, and check again, pushes my brain too far, and I have to lie in the dark to try to make it stop. How can I feel well in an Academy where other people look at pain and see productivity, see the shadow on the wall cast by a pathology and declare it a work ethic? How can I function here? How can I function anywhere?
And yet I know for certain - with actual certainty, not the false kind the OCD sends - that people with mental health and neurological problems are valuable, intelligent people. I know for certain that academics with these conditions make major contributions. I know for certain that those people who have been open about their conditions, and their problems, have helped me. Cartoonists, writers, presenters, literary studies scholars, and historians have all made important and beautiful works out of their pain. If I can unquestioningly accept the value of the intellectual work of other people - other creators and academics with problems like mine - can I accept the value of my own mind? Can I believe that other people will?
Why did I decide to write this? Is it to free myself from the prison of shame that keeping medical conditions private can create? Is it to find sympathy? To aggrandise myself or pity myself, or hurt myself? To martyr myself? Will I cause myself too much pain with the vain and self-important idea that I will help others by writing this? Will people react negatively to this? Or will they not even notice it? Have I disclosed enough to help people? Or have I exposed myself by sharing far too much? The reality I must live with is - I just don’t know.
About the Author

Clare Griffin is a historian of early modern science
Portrait photo of Clare who is 
dressed smartly and facing the camera 
in front of a plain background.
and assistant professor at Nazarbayev University, Republic of Kazakhstan. Her work focuses on global exchanges, practical knowledge, and translation, especially as this relates to the early modern Russian Empire.

Monday, 13 January 2020

Gratitude

Written by Ella Hollis 


Ella kindly gave us permission to share this post from her personal blog.

I think that going through any kind of hardship, no matter of what nature, can sometimes mask what you do have in life to be grateful for.

Ella, a young white woman with
long blonde hair, is dressed
formally in a black academic
gown. She is standing on a lawn
facing the camera and smiling.
It’s so easy for me, and only natural, to focus on what I’ve lost. Compared to only 4 or 5 years ago, I’ve had my world totally stripped of life as I knew it. My total life plan was scrapped, I have had to intermit from university, I no longer have any independence, I have to use a wheelchair and rely on carers to do the simplest of tasks I never imagined, at my age, not being able to do. My life went from having a successful academic career to spending extended periods of time in hospital, with my body failing me more and more. My daily routine was suddenly out of my control, and my life was dictated by my body.

This week in particular, I’ve been really struggling. I don’t really know why; as always, there has been a lot going on, but I just haven’t been able to see a way forwards. I can’t help but apologise for basically my existence and the smallest of tasks seems massively overwhelming. I just haven’t been able to get myself out of this frame of mind and I’ve spent so much time in tears.

Ella is in her home cuddled
up to her dog Jeffrey. They
both face the camera and Ella
is wearing a nasojejunal tube.
How did I get here? 23 years of age, I can’t even eat a meal, I’m fed through a tube in my nose, I have a stoma bag, I’m in a wheelchair, my health conditions have been taking over my life and I don’t know how much more I can take.

However, although I’ve found it even harder than usual to see clearly, I need to try to focus on what I do have and what I am truly grateful for. Please don’t think that this comes easily, because I can assure you it doesn’t, and whatever positive front I may seem to put on here isn’t how I feel most of the time.

Firstly, there’re things to be grateful for because of my illness. This sounds
Ella is pictured in a cafe with a
friend. Both young women are
in wheelchairs and smiling
directly at the camera.
crazy, I know, but without it I wouldn’t have met some of my closest friends who share some of the same conditions as me. I’ve lost most of my older friends because of being unwell, but the friends I’ve met through my blog or other forums understand me like no one else and the bond I have with them is something I’m so grateful for. There’re people whom I can talk about things I never imagined myself having to discuss at my age, but people who have an understanding of at least some aspects of what I’m going through.

As well as this, my illnesses have truly changed my perspective on life. It has shown me the most important things which, to me, is my family – I have the most supportive parents, sister and boyfriend, as well as Jeffrey who brings me more joy than anybody realises. Being unwell has also made me grateful for the smallest things I never realised I took for granted; getting fresh air after eight weeks in hospital, sleeping in my own bed and having a nights sleep without being sick.

Ella is looking down at her
dog Jeffrey who is sitting in
her lap. She is pictured outside
a building in her wheelchair.
When I really thought about it, I also have a lot more to be grateful for – good days where my pain and other symptoms are manageable and I’m able to get out the house and enjoy myself, even if it’s just taking Jeffrey to the woods. Getting a surprise, receiving a nice message or comment on a blog post or getting a letter from one of my pen pals; honestly the smallest things now just mean the world to me as I understand the importance of kindness more deeply.

As difficult as life is at the moment, and as much as I’m struggling both physically and mentally, all I can say is that the love and support from my family and friends, messages, visits, and any act of kindness, no matter how big or small, is appreciated more than I can put into words. No matter how challenging life gets, there is always something to be grateful for.

About the Author

Ella, who is 23, was studying Natural Sciences at Cambridge University but unfortunately had to intermit from uni for the last three years due to ill health. She suffers from EDS, PoTS, Gastroparesis and associated conditions as well as Crohn’s Disease. She writes a blog to connect with others in similar positions with the hope to support them, as well as document her journey.

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.