During the last several months, I've written much concerning how disabled people are only valuable to the media for their redemption stories, and why it is difficult to attain proper medical care. Last June I discussed the increase in my pain levels due to an advancing genetic condition, after I wrote an introductory post introducing you to Ehlers-Danlos Syndrome. To say I've spilled ink is an understatement; I even took you deep into my life with chronic illness, writing my own personal frequently asked questions addressing what I wish you understood about my fluid, but still disabling condition.
However, absent thus far from my writing has been the most basic truth that underlies all of my experiences with disability: simply existing is physically and emotionally tiring.
Me vs. the Abled
If someone were causing you pain, how do you politely ask them to stop? What if they won't? What if they're a stranger?
This is a narrative I play out almost daily as entitled mothers bounce the stroller with their precious cargo off some part of my body. I don't have to be in the way, just nearby. If the stroller doesn't roll over my foot (which I've usually tucked away well in advance), I'll often be hit with a diaper bag.
I can't tell you how often that has happened, so we can therefore surmise that public transit is a dangerous place for the chronically ill. Today, however, I found myself wheezing as I begged a middle-aged woman to help me clear the car of her excessively strong perfume. It was, in her own words, to mask the repulsive smell of cigarettes.
What I didn't mention was that I avoided her on the platform because of the smoke: I spent a large part of my childhood in the house of two heavy smokers, which affects my respiratory health until today. After boarding the train and situating myself securely in the wheelchair area, I thought the stench had passed and began to breath easier. I was entirely unprepared for the wave of sinus-burning, cough-inducing, headache-fueling perfume that would hit me moments later.
“Excuse me,” I choked. “Did you just spray perfume or something?” The headache and disorientation that usually accompany such an event were becoming rapidly evident to me. “Yeah, outside, I think.” It was a dodge, as she had applied fresh purfume onboard the train car only moments before. “So, I'm incredibly allergic to strong chemical smells like this. Can you help me clear out the car? The smell is collecting here, in the front where I am and there's no doors.” I hoped, perhaps against all odds, that she would move, lift one of the nearby newspapers, and begin to fan. Instead, her lower lip turned outward.
“I've never known anyone who was allergic,” she quipped, an aire of superiority now accompanying the offensive smell already present. “I am, as are many of my friends,” I said, visibly tapping my wheelchair to quietly indicate her privilege in this exchange. “All I'd ask is that in the future, be considerate and don't spray perfume on the train. Outside, and away from most folks, should be fine.”
I don't know if it was what I said or the tone in which I said it, but I've never seen a grown woman pout in response to anything I've ever said, save now. I'm currently rearing a toddler, so I know a bad attitude when I see it.
She proceeded to inform me of a time when she was smoking outside and perfumed after, giving a nearby gentleman reason to complain that “his wife would want to know where he went to smell of perfume,” before finishing off with a real gem: “how can I know who is allergic? It is everybody? Who gets to say where I can spray? It's my right, after all.”
No, it's not your right. Even Good Housekeeping has published an article covering “Perfume Allergy Etiquette,” where they suggest skipping perfume if you'll be in an enclosed space period, because up to 30% of Americans experience sensitivity to scented products.
All that I asked of the woman above was that she assist in remedying the damage she caused. If that proved too much (and indeed, it was), I would've settled for a calm interaction. As our conversation continued, she remained fixated on the story of our illustrious gentleman.
“Look, the man in question sounds like an asshole,” I said, bluntly stating the glaringly obvious truth. “This story really has no bearing on what we're discussing today, I'm having a reaction here.” At that point she blabbered something that sounded uncannily like the off-stage voice in Peanuts; I tuned out as the headache became too much.
Four hours have passed since this interaction. I'm now resting at home after fighting off an aggressive headache and take no real pleasure in relaying this story to you. It is nevertheless important.
The graphic on a recent t-shirt from the DisVisibility Project reads, “our existence is resistance.” Perhaps existing in the world and asking to be treated with care is a revolutionary act.