I am severely allergic to shellfish. If I ingest it or if molecules are floating around in the air it can trigger a reaction ranging from itchy skin, hives, difficulty breathing, and will likely culminate in anaphylaxis if left untreated.
Naturally, when I was invited to join Brad and a friend of ours who also wears hearing aids, on a trip to the New England Aquarium, followed by lunch at Legal Seafoods, I did the sensible thing…I went along for the adventure.
I assured my companions that this was a perfectly safe activity so long as I refrained from munching on calamari or hovering my face too close to a steaming lobster. I casually bypassed my food allergies, waving them off with a flick of the wrist as if they were a pesky fly, a minor nuisance.
It was a beautiful spring day. The Pollination portion of the spring season in New England had not yet begun, and the sun felt just right on my face as we walked into the Aquarium. I was very excited to visit with the creatures lucky enough to reside in my favorite element, salt water. Upon entry, I was slammed by a blast of air thick with the heady odor of crustaceans and other pickings that were the standard diet of many of the inhabitants within the large tanks.
We paused to admire the penguins situated at the bottom of the spiral ramp, and while I was picking out which penguin matched my personality, my face began to crawl and sting and feel a tiny bit prickly. I swallowed down the panic, and calmly inserted my hand into the pocket of my pants, grasping at my supply of Benadryl, while mentally calculating when I would need to take them and how long it would take for medical personnel to procure and administer an Epi pen. It was at that moment that I realized because I did not bring a jacket or purse, my Epi pens were at home – along with my house keys – but that would be realized a few hours later. I gripped my Benadryl supply as if they were a magical talisman that could halt anything from progressing further. Luckily, the sensation faded the further we went up the ramp and away from the penguin enclosure, and I made it unscathed out of the main building of the aquarium to the safer environs of the theater where we enjoyed a fantastic movie about dolphins, sans fishy smells.
Intellectually, I knew that sharing this information with at least Brad was the wise thing to do considering how quickly this could escalate from a mild rash to cessation of breath. Instead, I kept the information to myself, rolling the proverbial dice in a game of roulette that would likely end with at least one Epi pen injection and a trip to the emergency room.
I have spent some time reflecting on why I chose to stay quiet about a potentially life threatening situation, and realized that it connects back to having a disability.
I have been a strong self-advocate since I was a child, and have never shied away from requesting needed accommodations and modifications to ensure my participation in a world not designed with my needs in mind. I have always gleefully skipped towards confrontation when a situation has arisen where I have been treated unjustly or denied a reasonable accommodation relative to my hearing loss. Admittedly, my patience has always been short with people that do not self-identify and advocate for what they need specific to their hearing loss or other challenges. I looked upon those people with disdain, unimpressed by their weak constitution. I viewed them as cowards, weaklings, and spineless wimps content with mediocrity. I have never settled for “good enough”, and could not abide by others that settled for anything less than the best because they were too afraid to advocate for themselves.
Imagine my shock to have found myself in a situation where I decided to “clam up” (pun intended) about a situation that was far more serious than not having access to preferential seating or closed captioning services. I have spent my entire life disclosing my hearing loss, a part of me that is so different from most people I interact with, and quite honestly, I am just tired of it. I am tired of self-identifying, asking for accommodations and modifications, and educating everyone around me about my hearing loss. For once, I desired to have a “normal day” – to just be able to move through the world and not think of anything else than the company I was keeping and the creatures I was viewing. I did not want to burden my companions in any way by asking for an alteration to the plans for the day thus disappointing anyone who was excited about an aquarium visit and seafood lunch. My desire to accommodate others fortunately did not lead to certain disaster, but the day could have ended very differently all because of my own discomfort with self-advocacy and self-identification.
In closing, I would love to be able to blame this interaction with Brad on delirium due to an impending allergic reaction, but alas…
Julie: (peering down over the railing, halfway up the spiral walkway) “There are so MANY penguins here!”
Brad: (amused and potentially concerned about my intellectual functioning) “Those are the same penguins we saw when we came in…we’re just higher up…”
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