The Necessary Labor of Naming and Respecting Chronic Anger

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
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 Kimberlé 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.


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


You see it in every teacher movie: the truly committed, hopeful, usually white teacher is willing to sacrifice their time, their happiness, the 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.


3. Frustration of not being taken seriously or being minimized


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.


4. Annoyance at microaggressions suggesting your body is an inconvenience


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.


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


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.
6. Disgust at ignorance and cruelty


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


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 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 Author

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.

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.

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.

Intersectional spaces of disabled people of colour in academia

Written by Karim Mitha

“Quite rightly”.

Two innocuous words that have embedded within them a summation, a decision, a judgement of finality, a presumption.

As I write this, on the heels of Mental Health Week at various educational institutions, I’m reflecting on the structures and cultures of workplace environments in terms of the accommodation of neurodiverse people and those with “hidden” disabilities. We live in a neurotypical world, where those who have different frameworks, experiences, patterns of thinking and ways of engaging are labelled as “deviant” or “problematic”. We’re told “it’s time to talk”- yet who is listening? We seek to normalise difference, by stating the importance of adjustments and accommodation; yet, it is often those who require these adjustments who are stonewalled or labelled as “problems”. Whilst there is substantial literature showcasing the underemployment of those with disabilities (Powell, 2018; Hendricks, 2010; Roux et al., 2013; Redman et al., 2009; NAS, 2016) it is particularly striking that this exclusionary environment is perpetuated within our institutions of higher education – where we ostensibly value the ability to challenge contemporary discourse, change assumptions, shatter barriers, and advance knowledge. However, evidence abounds that these same institutions replicate these exclusionary practices. For example, the work of Kalwant Bhopal (2015), Alexander and Arday (2015) and statistics from the ECE (2011) demonstrate that there are lower attainment and educational outcomes amongst BME individuals and poorer experiences of BME staff in UK higher education. Additionally, we increasingly hear stories of students and academics with disabilities fighting to get workplace adjustments, despite it being accorded to by law, due to the ignorance or otherwise of certain staff (Brown & Leigh, 2018).

The debate regarding hidden disabilities is highly problematized. Are diagnostic labels helpful? Do they risk “labelling” or pathologising non-culturally normative behaviours? Why do certain conditions appear to be patterned amongst certain demographic groups? Through Kimberlé Crenshaw’s (1989) work on intersectionality, we are now familiar with discussing intersectional spaces and the influence of multiple identities, positionalities, and subjectivities on an individual.

This can compound a negative experience on an individual who occupies multiple marginalised spaces and through efforts such as “mad pride” (Schrader, Jones, & Shattell, 2013) we can see that there are elements of label reclamation – in which disparaging and negative terms are reclaimed and incorporated as part of one’s identity. Alas, whilst there is movement “on-the-ground”, it pushes against a strong stonewall and intransigent culture in the ivory tower of academia. We’re told to disclose conditions to those more senior so that adjustments can be implemented, as per the Equalities Act and legislation that “reasonable adjustments” can be implemented. Imagine then, when disclosing a diagnosed condition, to be told “Now, did you know about this beforehand?” What is the implicit message being stated by this question – that supposedly if you had a diagnosis you should not be occupying that space? That you are not welcome? Or perhaps the unstated message that if you did know and had told us we would not have accepted you? As a personal tutor and research supervisor myself, I know that statements such as these are unacceptable, that my students come from different backgrounds, with different strengths, and whether they are abled or differently abled my job is to help them to reach their full potential and be supportive of whatever adjustments they require to perform to the best of their ability. Why then do we permit older (mostly white) academics to make comments such as the above with distinct able-ist undertones?

I love my work. I enjoy working in mental health research, engaging with vulnerable populations and communities, hearing personal insights and trying to make some addition to the evidence base through examining personal experience and encounters with distress. Nonetheless, I’ve also seen how this work can be politicised and how scholars with no training in social work, psychology, psychiatry and the like can feel they have the expertise to make judgements and pronouncements on matters outwith their area of expertise. When middle-class able-bodied (usually white, male) academics make pronouncements and decisions related to the BME experience it perpetuates the narrative and discourse of what is called “whiteness”, using the defence of “academic judgement”. Whilst this term appears to be the catch-all to justify questionable activity on the part of academics, it is concerning when this is used against those in more vulnerable and marginalised spaces. For example, issues of patient safeguarding in health research is not an “academic judgement”. Matters of research ethics, confidentiality, data protection, Caldicott principles, patient risk and benefits are not “academic judgements”. There are guidelines in human-based research, of working with clinical and vulnerable populations, of statutory frameworks and procedures which must be legally followed. It is not an “academic judgement” to ignore them, nor should the discourse be shifted to the disabled academic to be a “problem” for stating that these principles must be followed.

When considering the “social model of disability” we are now encouraged to employ an “asset-based” approach, of looking at how structural factors and adjustments can be made to work with the strengths of the individual, rather than a “deficit-based” approach, of looking at the student’s challenges. Instead, often times middle-aged, middle-class, able-bodied academics employ an “able-ist” mentality to try and portray a student’s/colleague’s disability as a “hindrance”. The notion of “academic judgement” applies to preserve and protect the egos, reputations, and culture of middle-class, able-bodied academes – this then serves to make matters of research methodology be construed as “academic judgement”. For example, it is seen to be okay for scholars with no subject-area background to negate methodologies in other disciplines due to “academic judgement” – so luck help you if, for example, you are a scientist trying to use a computer programming language to interpret old manuscripts and have a literary scholar claim the computer code is incorrect because it is an “academic judgement”. This is further compounded by the power dynamic from positionality and perceived authority which can occur when one considers issues of seniority and race.

Alas, whilst there may be a push towards “unconscious bias” training, which still is not mandatory, there is no requisite training for academics in working with students with diverse learning needs. There is no awareness as to why certain students may need things explained in a certain manner, or why some may need to take sick leave for disability reasons – instead, particularly in the humanities, there is a feeling that the academic knows all and can make judgements overruling clinical decisions, with the awkward experience of having to disclose in detail aspects of a particular condition to academics with no background or training in that condition who can then make pronouncements on what adjustments would be made, if any.

Along with the overt discrimination one can experience, there are the subtle, nuanced, approaches which can’t be quantified or measured directly. This is experienced through exclusionary practises, different standards and expectations, and often implicit academic politics – the not inviting someone on a grant, not co-authoring with the PhD student, not signposting to relevant career development/networks, not collaborating on pieces of work, not including one in conferences/workshop/symposia, etc. There is an irony when, for example, junior (often BME, often working class) academics are overruled in their subject area specialism by administrators or non-subject area experts with differences in approaches being framed as obstinate and difficulties due to the former’s disability, rather than the more reasonable recognition of it simply being outwith one’s speciality. It takes some degree of humility to know one isn’t an expert in all things yet institutional structures promote the concept of the “all-knowing” academic and power dynamics can result in those who can challenge remaining silent.

Part of being an academic is to develop skills in knowledge dissemination through conference attendances and academic publications. How is it then appropriate for able-bodied academics to tell a junior academic with a disability to “Prove you can write”? Should it not be, “how can I help/support you to produce this work?” “What would you need help with in this article/paper/etc”. Why is it okay to “victim-blame” or shift the onus on to the most marginalised? Moreover, how is it acceptable to tell a BME student that their religion/race/culture is a hindrance to their mental health – and then have a pithy apology “if the unfamiliar wording caused you anxiety”? That statement in and of itself is belittling of an individual with a hidden disability and makes judgements on capacity, resilience, and the real concerns of those who may have anxiety-based disorders.

For those who are new to academia, a quick learning curve is anticipated. Yet, for those with hidden disabilities, it is difficult to tease out the nuances, the social norms, and the intricacies of navigating a bureaucratic, idiosyncratic, exclusionary, able-ist environment. Networking and support are vital. For example, providing adjustments so that the individual can do the work and be supported to perform to his or her ability. Having support from the Disability Office or Occupational Health is essential in this matter. What is not okay is for academics to dismiss this by virtue of being an administrator and making a judgement that “quite rightly” support is not required in conducting work in which the administrator themselves have no prior expertise. To have questions asked of “how would this [adjustments] be funded” when actually it is not the student’s/ individual’s responsibility to fund required adjustments, particularly when subject-area experts have suggested multiple means of providing accommodation and adjustments. How interesting, then, it is that it is permitted for academics without the requisite subject-area knowledge to overrule input from subject area experts (often women) (often BME) and that of recommendations from those more clinically qualified. It would be unfathomable for an electrical engineer to advise a literary scholar on aspects of cultural and literary theory– yet it is seen to be okay for area studies academics to dictate empirical research methods and protocols outwith their methodological purview simply because they claim expertise in the area studies of that population. Thus, this is an area where “academic judgement” can be seen to override legal obligations under the Equalities Act.

I feel a sense of irony, that as an academic working/lecturing in mental health research, to have assessments made by those who are unqualified to do so on one’s capacity, research, capability, and research potential. Still, power dynamics abound where able-ism, classism, and racism overpower the voice of the marginalised.

In contemporary discourse, there is concern about the voices of the marginalised, the under-employed, those with differing equal opportunities characteristics. As an academic teaching on disabilities, I ask my students if the very spaces in which they are studying in are inclusive and accommodative for those with differing abilities and learning needs. Yet, whilst students readily take on board issues of diversity and inclusion, this same engagement is not felt at a managerial or administrative level where, despite legal obligations to Equalities, administrators can often act as autonomous agents hiding behind the framework of “academic judgement” to justify questionable actions and approaches.

I write this because as a medical school lecturer I teach the future generation of care providers. I am able to impart to them issues of equalities in their clinical practice and everyday environments, discuss aspects of stigma and discrimination, and outline concepts of intersectional spaces and microaggressions. I am quite humbled that the medical school in which I teach is supportive of this work and in promoting equality and diversity. However, it is a shame that oftentimes humanities departments, which seek to examine the human condition and experience, have yet to take this on board and instead promote hostile environments to neurodiverse peoples and are woefully under-represented by those who actually occupy marginalised spaces and backgrounds. I am in a position where I support students through difficult times and experiences, and work with them to get them to demonstrate their potential – yet this concomitant support is lacking from those more senior. When I hear of a mental health crisis amongst students I wonder if we are becoming so caught up in neo-liberal academia, of focusing on metrics, completions, graduations, retentions that we forget that in an era of equal opportunities not everyone comes from a cookie-cutter mould of middle class, white, privileged, able-bodied. Equalities and recognition on diversity is not a tick box exercise but necessitates a culture change where this is embedded into curricula and departmental culture and the behaviour of its staff. Unconscious bias training should be mandatory and people should not be belittled due to protected characteristics. Abuse is not a right of passage.

Quite rightly.

The summation, decision, judgement, and assumption regarding the support required by neurodiverse people; if departments permit these judgements being made, and reframing struggle as a student’s performative concern rather than due to a negative structural environment, they are complicit in creating exclusionary spaces and environments.

My writing this blog post is both cathartic and also an awareness that if departments and academics can bully and belittle junior scholars simply because matters are outwith their subject area expertise and then blame a student for falling ill, deny leave, and frame any struggle, which is normally part and parcel of the research process, as incapacity and incapability rather than the structural issues of supportive learning environments, then it shows that perhaps there is an uphill struggle for neurodiverse people to fit in exclusionary neurotypical spaces. I write this to show that this culture must change, that neurodiverse people have strengths, and that “quite rightly” I can “prove” I can write.

References:

Alexander, C., & Arday, J. (eds) (2015). Aiming higher: Race, inequality, and diversity in the academy. Runnymede Trust: London.

Bhopal, K. (2015). The experiences of black and minority ethnic academics: A comparative study of the unequal academy. Routledge: London.

Brown, N., & Leigh, J. (2018). Ableism in academia: where are the disabled and ill academics?. Disability & Society, 33(6): 985-989.

Crenshaw, Kimberlé (1989). "Demarginalizing the intersection of race and sex: a Black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics". University of Chicago Legal Forum: 139–168.

Equalities Challenge Unit (2011). The experiences of black and minority ethnic staff in higher education in England. Equalities Challenge Unit: London.

Hendricks, D. (2010). Employment and adults with autism spectrum disorders: Challenges and strategies for success. Journal of Vocational Rehabilitation, 32(2), 125-134.

National Autistic Society (2016b). The autism employment gap: Too much information in the workplace. Retrieved from: https://www.autism.org.uk/get-involved/tmi.aspx

Powell, A (16 August, 2018). People with disabilities in employment. House of Commons Briefing Paper, 7540.

Redman, S, Downie. M, Rennison, R and Batten, A (2009), Don't Write Me Off: Make the System Fair for People with Autism. The National Autistic Society: London.

Roux, A. M., Shattuck, P. T., Cooper, B. P., Anderson, K. A., Wagner, M., & Narendorf, S. C. (2013). Postsecondary employment experiences among young adults with an autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 52(9), 931-939.

Schrader, S., Jones, N., & Shattell, M. (2013). Mad pride: Reflections on sociopolitical identity and mental diversity in the context of culturally competent psychiatric care. Issues in Mental Health Nursing, 34(1), 62-64.

About the Author

Karim Mitha teaches at the Edinburgh Medical School and supervises students on the MPH. With his interdisciplinary background in public health, psychology, and Islamic Studies he focuses on stigma and discrimination, cross cultural mental health, public health, health inequalities, identity and acculturation. Prior to Edinburgh, he was a lecturer in Public Health and Psychology at De Montfort University. He is a Fellow of the Royal Society of Arts, Royal Society of Public Health and is a member of the British Sociological Association and the British Psychological Society. He is also trained in mental health first aid and in counselling skills.

Reflections on being awarded tenure as a woman with kids and a disability / chronic illness

Written by Holly Witteman 

We have kindly been given permission to reproduce this from Holly's blog, where you can read the full article.

There is no universal experience. In my individual experience, a good partner can make the ‘with kids’ part much easier but the ‘and a disability / chronic illness’ part remains tough. Support helps, but no one else can ever do the daily, relentless work of keeping myself alive in a world and career that isn’t always well-structured for staying healthy. The things that have worked well for me have been: (1) being flexible geographically, even at a cost to my family, (2) being extra disciplined about working hard whenever I can to balance out the times when I can’t, (3) using a calendar, not a To Do list, for planning my work, (4) writing constantly, and (5) having full drafts of grants ready 6-8 weeks ahead of deadline for rounds of pre-submission review. It also gives me hope for the future of science and research to (6) use my position to work to improve the system so that research and researchers don’t continue to be held back by barriers that have nothing to do with the quality of one’s work. This effort may or may not help me, but I am determined that it will help others. I am glad not to be alone in these efforts, and I invite anyone who isn’t already involved in such efforts to join in. Especially if you are an academic in Canada, please read this book.

In November, my application for tenure and promotion was approved. June 1, my rank went from Assistant Professor (professeure adjointe at my French-speaking institution) to Associate Professor (professeure agrégée), a bigger deal than I ever understood before I became a professor. This means that the university at which I am a professor has more of a commitment to me, and I to it. I will still be reviewed annually and need to continue to work hard, especially if I want to continue doing work that is funded by competitive grants, but this provides a higher level of job security than I had before. It means, essentially, that I cannot be fired without cause.

It has been a long road to get here, and the road doesn’t end here. My colleague Dr. Brian Zikmund-Fisher once told me, “Getting tenure is like winning a pie-eating contest in which the prize is more pie.” I have already found this to be true. But it’s a good time to take stock.

I originally started writing this for myself. I write for myself a lot. It is how I sort through my thoughts. In this case, those thoughts were about how I got here, what has gone well for me that I should keep doing, what has gone less well for me that I should stop doing, and what else I can do to help improve the system. I read something recently that really resonated with me and so I decided to share this post in case any of what I’ve written might be helpful to others, especially any others like me. (Those others will have to be people who can make it through many, many paragraphs. Scroll down towards the bottom if you just want my list of things that have helped me.)

I have two kids and have spent nearly all my life living with type 1 diabetes, a time-consuming autoimmune chronic illness classed as a disability. My kids are 10 and 5 years old. My diabetes is 34 years old. It took me quite a few of those 34 years to identify as disabled, a period of time I now recognize as being marked by my own internalized ableism that took some time to address, a growing awareness of how much I still have to learn about other forms of disability, and fear. When I say internalized ableism, put plainly, I mean that didn’t want to identify as disabled because I saw it as a negative attribute rather than just an attribute. It took me a while to deal with that. My fear comes from being afraid of having my ability to do my work impeded by ableism. I’m having a very successful career so far. I’m thrilled to be able to do research that I hope will help many people. I love doing the work I do. I love solving problems, answering research questions, and being able to support trainees in their paths toward their career goals. I don’t want that to stop for any reason, but I especially don’t want it to stop because people who have power over my career may be prejudiced.

My fears are well-founded. Academia is a competitive, reputation-based business, reputation is determined by people, people shape and are shaped by fundamentally unequal social structures, and many people also have individual biases. Individual biases may be conscious or unconscious, against groups of others or against groups of which we are members. There are many randomized controlled trials and well-analyzed observational studies in which the data support what people from underrepresented groups have long said: when you are a member of one of these groups, you have to be extra good to get an even chance. (For those who are curious, here is an excellent annotated bibliography on gender bias and other biases in academia. I also linked to a number of studies in this editorial and you may also wish to use search engines and academic databases just like you would for any other academic topic.) 

The effects of four such biases in academic research in Canada are most easily apparent in statistics for the Canada Research Chairs program, a prestigious salary award program that was required to set targets for equity after a court settlement. Canada Research Chairs pay whole salaries or portions of salaries of professors and thus, are used as recruiting tools and/or budget line adjustment tools by universities. It’s up to each university to nominate people for the chairs they have been allocated. They may nominate professors already appointed or they may recruit new professors.  

The idea of having these targets is to help ensure that known biases in academia don’t prevent qualified candidates from being nominated. These targets are achievable, not aspirational. They reflect realistic, even low, proportions within the available pool of candidates in academia. All of the targets are well under than the associated proportions in the general population. In Canada, including Indigenous nations, women represent 50% of the population, visible minorities (a Canadian term for people of colour) represent 22%, Indigenous peoples represent 4.6%, and disabled people represent about 14% of the population aged 15 years or older. For context, in the US, 19% of the population have a disability. In Australia the figure is 18%. In France, the statistic is 18%, with 80% of those being invisible. In the UK, 16% of working aged adults are disabled. Countries don’t all have the exact same definitions of disability but it’s clear that in all countries, there are a lot of people who face different kinds of barriers.

The fact that the Canada Research Chairs program isn’t achieving easy targets suggests strongly that the nominations processes as a whole are unfortunately biased, most likely in subtle ways that may be hard to identify in any single decision. This means we, as a group, are likely failing to hire and/or nominate excellent candidates. Data below are from the Canada Research Chairs’ Program Statistics, using their nomenclature. They only report single categories, no combinations. In other words, as Dr. Malinda Smith notes, there is no intersectional presentation. In statistical terms, this is like looking at main effects but not interactions, even though you know that interactions are likely to matter.

Canadian universities have had trouble with all four targets but they failed most spectacularly in nominating disabled people, so much so that the target was lowered. Among the people I know in academia in Canada who advocate for leveling the playing field for everyone, they often bring up issues of sexism, sometimes racism, sometimes colonialism, but rarely ableism. (There are also other dimensions that get less attention in academia; e.g., gender identity, sexual orientation, socio-economic background, and others.)

About the Author

Holly Witteman, PhD, is an Associate Professor in the Department of Family & Emergency Medicine, Université Laval (Laval University), Quebec City, Canada. Quebec City is unceded traditional territory of the Abenaki and Wabenaki Confederacy and the Wolastoqiyik (Maliseet) people. Dr. Witteman directs the research unit within the Faculty of Medicine’s Office of Education and Professional Development. She is also a scientist at the Research Centre of the CHU de Québec-Université Laval, at the new Institute of Primary Care Research affiliated with Laval University, and an Affiliate Investigator at the Ottawa Hospital Research Institute, Ottawa, Canada, unceded traditional Algonquin territory. With an interdisciplinary background in human factors engineering, human-computer interaction, and decision sciences, her research is about the design and evaluation of digital and other media in health decision making. She specializes in human-computer interaction in health education, risk communication and decision making, including design methods to support broad, inclusive user-centredness and patient-centeredness. Her work as Principal Investigator has been funded by the Fonds de recherche du Québec – Santé (FRQS), the Patient-Centered Outcomes Research Institute (PCORI, United States), the Canada Foundation for Innovation (CFI), and the Canadian Institutes of Health Research (CIHR).