Whoa

While out doing my thing, minding my own business, I field countless intrusive questions and inappropriate comments from strangers, most of them well-meaning but also misguided. Although many of these encounters leave me annoyed and, often, a little amused, I usually manage to brush them off and move on in short order. I’d rather not give them more power than they deserve, and, frankly, I’m super conflict-averse. Besides, there’s great satisfaction in literally turning the other cheek and leaving my source(s) of irritation in the wake of my beautiful wheelchair as I enjoy the comfort I get from knowing that I’ve built such a sturdy protective wall around myself.

And what a hefty barricade it is! Indeed, maintaining composure is a superpower I’ve developed over the years, having had ample opportunity to hone it in a variety of contexts. It often serves me well (whether in everyday circumstances, when it allows me to hold my tongue in situations to which I don’t want to devote a lot of emotional energy, or during rarer, higher-stakes events such as my PhD defence, which I somehow survived without projectile vomiting over the examination committee). Sometimes, on the other hand, it isn’t so advantageous (for example, when it causes me to retreat into rather than stick up for myself). In any case, I’ve come to rely on this fortification. Denying one’s physical and emotional needs: it’s a (good?) thing.

A few days ago, my protective wall of calm crumbled in response to a fairly routine-for-me remark/outburst.

It was the first time I’d met this variation of it, but it wasn’t an enormous deviation from phrases I’ve heard before. There was something about it, however, that got to me at a surprisingly deep level, so much so that my initial reaction was tears—an instinctual response from a woman well-practised at the art of hiding her emotions.

For reasons too complex and personal to explore in any deep way in a public blog post, I’ve been conditioned to assume that my health issues are fake, that I should keep them hidden because the alternative—seeking care—would result in my being accused of making something up or exaggerating. Though I’ve made a lot of progress toward changing this core belief, the idea still terrifies me. I’ve had many the nightmare about it, and it was a recurrent theme of the alternate reality I experienced while I was in a comatose state. Can’t fake that!

This worry was certainly worse when my disabilities were mostly invisible and thus had to be explained. If the incredulous stares I received are anything to go by, it’s apparently hard to wrap one’s head around a seemingly high-functioning individual spending weeks in the hospital for life-threatening seizures only to be discharged and almost immediately go back to working on her PhD. (In retrospect, I recognize that my desire to avoid a potential confrontation caused me to perpetuate a cycle of driving myself to exhaustion and then ending up in status epilepticus.) Now that my disabilities are much harder to miss, things have swung too far in the other direction, with people tending to assume that I’m less capable than I am, that my overall state of wellness is worse than it actually is, simply because I use a wheelchair rather than my legs to negotiate the world. And so when a stranger asks me a prying question or gives unsolicited advice on the sidewalk or in the library or wherever, nineteen times out of twenty they want one of the following: to know what’s “wrong” with me; to tell me that if I would only convert to a different religion or take a certain supplement or go to a certain specialist I’d be “cured”; or to offer to help me cross the street. Despite this, a little part of me still expects to be informed that my big secret is out, meaning that that I’m just not working hard enough or that I’ve fabricated a big lie and and am trying to get away with something (but what?). That I’m choosing not to stand up and amble down the street.

That’s why I was so shaken by the words launched at me by a young guy I passed while en route to the grocery store.

“You can walk!”

As I admitted earlier in this post, tears sprung to my eyes. How dare my pesky emotions betray me like this! Imposter syndrome activated, I started to question myself. Is my wheelchair entirely for show? Am I lazy? Do I have some other ulterior motive for choosing an incredibly inconvenient and limiting way to ambulate over using the limbs I was born with? I reassured myself with a depressing reminder: that no matter how much function I manage to get back, no matter how much progress I make, I’ll always need to use a wheelchair outside (because my seizures and the side effects of my medications make me a major falls risk, which is hugely problematic given that my bones have the propensity to shatter at minimal impact). This is one case in which I’d much rather be the imposter I so fear becoming/being told I am.

Now, I’m not entirely proud of what I did next. It was kind of impulsive of me and didn’t take into account that this sidewalk stranger’s declaration probably wasn’t purely malicious; I’ve seen him around and sense that he has his own stuff going on. Nevertheless, I did do it, so I might as well say that it was pretty darn satisfying in the moment.

Having stopped in my path and turned around to face this impudent stranger, I coughed to get his attention.

“Whoa,” I said in my best sarcastic tone, “I can walk?!? Amazing! Thanks so much for telling me! Let me try!” I then flipped up my footplate, making it seem as if I were preparing to stand up.

His eyes widened.

“STOP! NO! YOU CAN’T WALK!” he yelped. He quickly scurried off in order, one can only assume, to avoid witnessing me crumple to the pavement. I readjusted myself and proceeded to finish running my errand and, of course, to obsess about his comment for the rest of the day.

Interestingly, this incident happened to coincide with my beginning to experiment with walking in my apartment a bit. However, that doesn’t make what he said right. First, there’s the fact that for the reasons outlined above, I’ll likely never walk outside. Second, and more to the point, why I use a wheelchair and what my physical capabilities are = absolutely none of his business.

I’ve had ample opportunity in the week or so that’s elapsed since this interaction to ruminate. Only today did I decide that I’m not totally sad about it. Maybe it happened for a reason (not that I actually believe that things are determined by fate, but that’s an aside). Maybe I need to start dismantling my wall, brick by brick. Maybe I need to learn to stop gaslighting myself by letting my own internalized ableism and fears stand in the way of my accepting my reality and advocating for my rights. Maybe I need to gain confidence standing up for myself—metaphorically—when I have the energy to do so: fewer meek smiles, more firm and assertive whoas.