Living and teaching in an unruly body

I am a university lecturer. My department is hosting a speaker. I shake his hand…and try not to visibly cringe because it hurts.

I teach two of my college classes in a row, then take another class, since I’ve decided to study ASL. Then I leave campus to teach dance, thereby missing out on another round of social events that informally have some bearing on my job.

I am expected to attend departmental meetings. One set of meetings is rescheduled, meaning I have to miss working out every other week with my personal trainer, who understands weird neurological issues like my own. There is no way to gracefully frame this as a medical issue, so I reschedule my workouts as best I can.

Academia is founded upon the premise of mind-body dualism, which I have of course ranted about in the past. We scholars are supposed to behave as though we are brains suspended in fluid, our bodies conveniently on hold until we can attend to them. Living the life of the mind has many charms—I suppose I’d take burnout over backbreaking labor, not that either constitutes good labor practices—but dang if it’s not tough to navigate ivory tower spaces when your body doesn’t conform to the expected norms.

Weird embodiment is clearly an issue of interest to secular folks: we don’t believe in intelligent design, so there’s no need to gaslight ill or disabled people about how our bodies should be working but aren’t.

And yet.

Ableism remains quite prevalent in American society, as I’ve pointed out in connection to anti-vaccine rhetoric. Very few public, private, commercial, medical, educational, or domestic spaces are fully accessible, even though the ADA mandates that they should be so. Perhaps worse than spatial inaccessibility is social inaccessibility: the myriad attitudes and norms that exclude and shame disabled people for things that aren’t their fault. Even nonreligious people spout ableist rhetoric, as in this example of Richard Dawkins endorsing eugenics.

Unfortunately, being secular isn’t a guarantee of being an ally to disabled folks. Nor is being enlightened and educated enough to regularly partake in the ivory tower. Universities evolved out of elite institutions of theological instruction, so I guess it’s not a huge surprise that they haven’t outgrown their roots in the last few centuries…and why would they? It’s difficult enough for disabled people to advocate for themselves in terms of receiving basic human rights, let alone inclusion in the highest institutes of learning.

But wait, I’m not disabled, am I? Probably not. Not yet.

Academic disability studies has provided the eminently useful concept of TAB: temporarily able-bodied. It’s a reminder that even those people in the greatest of health with the most toned physiques could suffer illness, accident, or injury at any moment that would change their status from nondisabled to disabled, disfigured, or dead. This isn’t meant to be morbid, but rather a reminder about how much of health is utterly dependent on chance, despite the heavy moralizing around physical health, thinness, beauty, and so on.

So in the TAB sense, yes, I’m temporarily able-bodied like a lot of people running around, oblivious to their privilege and ease of access.

But in another sense, nope: I have a genetic condition that means I’m very likely to develop some debilitating autoimmune diseases. It could happen sooner or later or not at all. I already have some alarming symptoms, like alternating numbness and tingling in my hands. I don’t intend to get into much detail here since that’s not the point of this post, but I’ve spent the last year coming to terms with being almost-kinda-sorta disabled, even if I’m not fully there yet. And I try to remain cognizant of just how much privilege I still have, since my body looks pretty okay on the outside and I’m pretty functional most of the time.

But how do I tell my colleagues this? Do I even owe it to them? Should I get some documentation from my doctors (yes, plural, I have a whole goddamn team to try to make sense of my issues) to HR, in the hopes that it serves some role in explaining why I can’t be on campus 24/7? Or would that just open me up to further ableist retaliation, if they start thinking I can’t do my job?

How do I even explain all this, and how it impacts my ability to do my job and live my life?

If I had to state it succinctly without referencing any diagnoses: my body is punitively fine-tuned.

When well-managed, which is a fine balance, my body is very very good. When poorly managed, it is awful.

If I don’t eat the right amount of the right kinds of food, I’m a wreck (too little: nasty stomach cramps and mood swings, and no, it’s not an official blood sugar response because obviously we’ve tested for that; too much: bloating and even insomnia, WTF). If I don’t exercise daily, sometimes multiple times a day, I get joint pain and stiffness (no, the rheumatologist doesn’t know what to do with that one; I’m also hypermobile, so go figure). If I don’t apply lotion every time I wash my hands in the winter, I bleed on things. And that’s not even getting into the neurological issues, which are sometimes so bad that I can’t reliably open door knobs or Ziploc bags. And I live by myself, y’all, which means lots of curse words.

When I spend the time and energy to take care of my body, the specter of pain and mobility loss recedes, and I can do amazing things: I can teach multiple consecutive college classes and then teach dance, I can churn out books, I can lift my own body weight on a pull-up bar, I can do the splits and shoulder stands. I lead communities. I teach critical thinking skills. I am amazing.

But there’s no good avenue to discuss this in academia. Nobody wants to hear about my kale smoothies (because learning you have diverticulosis at 40 is fun) or about an exercise regime that probably sounds over-the-top to normal people. Hell, I’m also pretty sick of all the things I have to do at this point to keep my body and brain running, but there is simply no way to pretend that I’m a mind floating in space while doing intellectual things.

I’m not thrilled with any of this. I fear that it’s inappropriate to discuss these topics, and I have to push through a lot of shame to do so…but I’m mostly writing about my issues because they’re not going anywhere. There’s no magical fix for what I have, and even all the healthy eating in the world will probably only provide a stopgap until my issues worsen enough to significantly impact my life. (This is a common ableist trope: just telling someone to eat healthier or do more yoga to fix any number of chronic illnesses or disabilities).

But I’m not going anywhere either.

Academia wasn’t built for people like me, even back when I was less-disabled and just a woman (and a queer one at that). Academia especially wasn’t built for divorced or single women, given how much we joke about how having a wife would really help with all the life-maintenance tasks that I don’t have time to do because I’m doing the full-time job of being a college lecturer. Academia also wasn’t built for people of color or first-generation working-class PhDs, so props to my colleagues who fit that description and keep on working to change the ivory tower from the inside.

I would like to help craft a more human academia, where students and staff as well as faculty get more grace for when our bodies and brains don’t behave in all the expected “normal” ways all the time. I don’t think I have a lot of power to make this happen since I’m not in a tenured or tenure-track position, but I do what I can.

I know I’m a better teacher when I attend to my unruly body, when I give it what it needs. Maybe not clamming up out of shame—out of fearing that I’ll appear flaky or undedicated or too ruled by my body when I’m in a brain profession—will help create space for others to prioritize their health and their whole selves as well.