The Crushing Mental Load of Disability

Am I not a “team player” anymore?

Statue Atlas by PeterKraayvanger on Pixabay

This isn’t the essay I was planning to publish next. I’ve been working on an essay about the lack of solidarity around COVID protection, but this is very much related. While I’ve been very sick since 2022, when I had my first COVID infection and then Long COVID, I came back from sabbatical in April 2024 with a diagnosis of an autoimmune condition and on medication that is designed to suppress my immune response. Since then, I have struggled to figure out how to erect boundaries that protect my health and keep me from having a flare, which means ensuring both that I don’t exhaust myself (mentally or physically) and that I don’t put myself in situations where there’s a good likelihood of my getting sick.

Something I've been struggling a lot with is when to say "no" when there is an in-person event at work -- whether it's an student outreach program, a meeting, a class, or something else. Sometimes these are fully optional things, sometimes they are things where volunteers are requested, and sometimes they are things where I'm straight-up expected to go. In most cases, my holding to a boundary and saying no means more work for someone else. More and more of our meetings now that worked fine online are going back to face-to-face. Sometimes I get the awkward experience of being one of a few people on Zoom in a mostly F2F meeting, but even those opportunities are dwindling. Once or twice I took a sick day rather than be forced to either take a risk that was unacceptable to me. There are a lot of things I don't volunteer for anymore and I feel like that's being noticed. And it's not exactly fair to my colleagues when other campuses have all of their librarians participating in face-to-face outreach activities and mine has two COVID-cautious people. It makes me feel like I'm not being a "team player."

The irony is that, pre-COVID, I was the librarian on my campus most likely to volunteer to do outreach events. I did lots of tabling, presented at a bunch of student and faculty orientations, and even organized library tabling at events like our Theatre program’s performances. I love love love interacting with our community. During the height of COVID, the one thing that gave me life was meeting with students on Zoom for research help. The fact that I’m putting my health first doesn’t mean I don’t care as much about students. It doesn’t mean I’m not dedicated to my job or a "team player." If I’m dead or further disabled, I can’t help anyone. I still teach in-person classes (masked and with the door always open) and I have a weekly shift at the reference desk, but I also make online tutorials, am embedded in online classes, do virtual reference, and teach Zoom sessions for online synchronous classes. What I find strange is that things like making tutorials and supporting online classes seem to be considered optional while much of the face-to-face stuff is treated like it's required. In a perfect world, we'd all contribute in our own ways based on our strengths, limitations, and passions, but it feels like that extends to some library work (the stuff I do most) and not other library work (the stuff that puts me at greatest risk).

I spent the first 15 years of my career with extremely porous boundaries if I had any at all. I’d been so programmed by my childhood to believe that I was a terrible, unloveable human being and that I had to make up for it by working hard and pleasing everyone. I think a lot of people-pleasers have a critic in their heads who tells them that they are a horrible person if they disappoint anyone. If a random stranger online doesn’t like you? If you have to set a boundary that supports your well-being but means saying no to a colleague? Well, that just proves what a piece of shit you are. Because I thought so badly of myself, I was plagued by the idea that I was never doing enough. So I always felt pressure to do all the things. I raised my hand and said yes to everything. I basically made librarianship my job, my hobby, my life. Work bled completely into my home life. And it wasn’t until around 2019, when I had a major health issue that had me thinking about mortality, that I started questioning how I was living my life. It wasn’t until really considered “what if you’re enough right now, just as you are?” that I was able to jump off that treadmill of striving and start unlearning those unhealthy habits and assumptions about myself.

In spite of the fact that I have done so much work on myself, my orientation towards work, and my boundaries in recent years, I feel a lot of anguish over these decisions. I think I still struggle with internalized ableism. I feel a lot of guilt that I can’t do all the same things my colleagues can, and that, when it’s an invisible disability, it’s often seen by others as a choice rather than a necessity. Because I could choose to put my health at risk (and have, in some cases out of a sense of duty). The risk is not always so clear cut and I have to be the one each time making the decision about whether something is too risky to do. And often, you’re making these decisions without all the information, like when this December, the International Student Resource Fair moved to a smaller space with many more people in attendance, which increased the risk to me exponentially. And I only found out about all that when I showed up that day and what could I do at that point? I ended up teaching an in-person class while I was on a month-long course of steroids (and so was even more immunocompromised than usual) because no one else was volunteering and I technically was available at the time (though so were others) and felt guilty. I have to make these risk-calculations every day, as do tons of other people in similar situations. There are no clear-cut guidelines for this, no metrics to easily help us navigate these decisions. I never know for sure if I’m being overly cautious or the polar opposite and someone else in the same situation may make completely different decisions. And tell me again how I’m supposed to be not exhausting myself mentally? This is another dimension of crip time that is far less liberatory than others.

Since COVID and flu cases were pretty low in my area in early December, I actually RSVP’ed yes to an end of term party for my division of the college. I’d planned to not eat and stay masked the whole time. But when I saw the huge number of people who RSVP’ed yes and I had no idea what room the celebration was being held in nor what safety precautions were being taken (from what I learned later, the answer was “none”), I decided not to go, which was a bummer because I miss socializing with my colleagues. It’s exhausting to constantly have to do this calculus for everything, to miss out on things, or to go to something that is a significant risk and feel anxiety about it. You can’t win. And then you have to deal with the perceptions of your colleagues who maybe think you’re being overly anxious or who don’t know about your condition at all and maybe think you’ve just become antisocial. But they don’t understand that the one time you actually went to a larger event in the past five years, totally masked the whole time and 6 weeks after getting vaccinated, you ended up getting COVID, which completely flattened you for almost a month. And after that, you had a horrible flare of your autoimmune condition which left you barely able to walk (and with vertigo, fatigue, neuropathy, and a host of other symptoms). And at that point, you’re then left with the choice of living in that flare for weeks or taking a course of steroids which will make you even more immunocompromised (among other side-effects) for a month or more. Your small choice of whether to go to a celebration or a student outreach event or a meeting could affect your ability to work and function for months, leaving your colleagues to pick up the pieces. They don’t have to think about these things (or they just don’t think about these things) and I wish I could do the same. I so miss just being able to go out and do stuff without a second thought! But given that I’m currently on day 6 of a flare that started because I got a tiny cold from my son that only lasted about two days, I know the consequences of that would be immense and long-lasting.

Me trying to figure out whether or not to go to an in-person meeting

I try to remind myself that these are accessibility issues and that no one is trying to make these in-person events or meetings more accessible to people like me and to folks who are still trying to not be disabled or killed by COVID. Not all of my colleagues know about my condition, but even of those who do, no one has made an effort to make in-person events more accessible (beyond offering a remote option sometimes, which I do appreciate as much as it makes me feel awkward). People don't put on masks around me. The spaces in which these events are held don’t have open windows or air filters. We have a big all-day in-person meeting coming up in a month and I’m already feeling anxious about it. My dean has written that she expects in-person attendance, but also made it clear to me that she didn’t mean it for people with a medical issue. Still, the thought that I’d be the only person participating remotely is filling me with a sense of dread that I can’t even describe. But the idea of being in a closed room all day with my unmasked colleagues (save one who still masks) during the height of so many winter illnesses fills me with just as much dread and is objectively more risky. More calculating – shame vs. health? The title of Geena Davis’ memoir Dying of Politeness comes to mind in this situation. Does a wheelchair user feel responsible for not attending an event only accessible by staircase? I hope not. Yet I feel all too responsible for my situation.

People who don’t have disabilities don’t know that the disability itself is only one piece of what disables us. Contending with the ableist world around us is often just as much if not more of a cause of pain, depletion, and harm. It’s in those moments that I’m most keenly aware of my disability. I spend a lot of time where I don’t think about my disabilities at all and just live my life like anyone else (just perhaps with a bit more pain), but it’s when I’m at work and in other spaces where that disability becomes an issue that I feel hyper-aware – sometimes feeling invisible, or hypervisible, or somehow both at the same time. It’s the constant calculating that we have to do about the spaces we are going to enter that I find most exhausting. I recently started Margaret Price’s Crip Spacetime (available open access, yay!) and I felt seen right from the jump. Here’s a small excerpt from the beginning:

We know what the room ­we’re ­going to looks like, and we know how to ask—­ with charm and deference—if we need the furniture rearranged, the fluorescent lights turned off, the microphone turned on. We know how much pain it will cost to remain sitting upright for the allotted time. We know how to keep track of the growing pain, or fatigue, or need to urinate (­there’s no accessible bathroom), and plan our exit with something resembling dignity. We know that no one else will ever know. What ­you’ve just read is a litany—or maybe a rant. I use it for two reasons: first, to remind ­ those who ­ haven’t performed that series of calculations that they are an everyday experience for some of us; and second, to call to ­ those for whom the litany, with little adjustment, is painfully familiar. (Price, 2024, p. 1)

I love when she writes that "crip spacetime is un/shared" (p. 29). I might be existing in the same physical space as my colleagues, but we are experiencing it differently. They may sit in the same chair at the reference desk as I do, but they may not experience it as such a malevolent presence in their lives. At home, I have a lot of control over my environment, but that’s less the case when I’m at work. The cold aggravates my Raynaud’s and makes my fingers hurt (even when wearing gloves). Sitting at the reference desk in a chair too big for my body when even under the best circumstances, I can only manage about 40 minutes of sitting in any chair before I end up in a significant amount of pain. But put me in a hard or ill-fitting chair and it’s so much worse. Right now, I work at the reference desk for no more than two hours straight, but come next term, I’ll be doing four hours, which I’m worried about. I’ve thought about seeking an accommodation so I could stand most of the time, but I can’t picture what that would look like and the cost would probably be huge given the uncompromising setup of our giant reference desk (also, going through the invasive and dehumanizing accommodation process again fills me with more dread than I can describe). Again, more calculus. I work on campus on Mondays and when I come home, I’m in pain and am so exhausted that I usually don’t feel myself again until Wednesday. I’m pretty sure my colleagues don’t need two days to recover from their day on-campus. And I don’t want to complain because I feel very lucky that I can work from home the rest of the week. It’s a gift and one that I know could go away at any moment. And it’s probably the only thing that is allowing me to keep doing my job. I don’t think my body could take it if that changes. So I also don’t want to push things because I’m afraid that rocking the boat could just make things worse.

I’m still pretty early in my journey with this particular condition (and with recognizing I have disabilities at all though I’ve had migraines for 24 years) and I guess I’m going to have to learn to have thicker skin and stronger boundaries if I want to stay well. I really love the work I do, I love students, and I don’t want to disappoint anyone, but I need to keep reminding myself that there are many ways to contribute and that a huge percentage (41%) of our students don’t come to campus and also deserve outreach and support. I can still do valuable work and be a valuable part of our team and still take care of myself. I just need to stop caring how others see me when I refuse to do certain things or when I’m the only person (gulp) online in an in-person meeting, which is hard for a life-long people-pleaser. While I’d love it if people tried to make these spaces more accessible, all I can control in this situation is my own choices and I need to stop worrying about whether people think I’m not committed or am not a team player (and I'm not suggesting everyone thinks that; I have no idea). My work over the previous ten years should speak for itself. And if people really wanted me around at any of these events, they could show it by masking to keep me (and others, and also themselves) safe.