June 20 will be the longest day of the year in the Northern Hemisphere. For many folks – especially those of us on the dreary West Coast – the long, sunny days of summer generate plenty of positive vibes. For me, the sunnyness makes me feel quite the opposite because I’m allergic to the sun. This disability is a rare inherited metabolic disorder called EurythropoieticProtoporphyria (EPP). Thanks to excessive amounts of protoporphyrin in my bone marrow and blood I have hypersensitivity to sunlight, which means that everything from playing with my kids at the park to having meetings in a windowed office can be challenging in the summer. Here are five things that being allergic to the sun teaches me about inclusiveness.
Seek to understand
Growing up, not everybody understood or accepted my sun allergy. One of my grandmas even ignored it. Kids frequently made fun of me for wearing gloves in July or just rolled their eyes in disbelief when I shared my story. More parents than you might think stated “that’s not a real thing” when their son or daughter brought them into the conversation. My mom even had to advocate for me to a teacher so that accommodations could be made because of my disability (the teacher didn’t think it was a thing, either). This kind of behaviour always left me feel excluded.
Everyone has a story. Inclusive people are naturally curious about folks and want to learn more about how their abilities jive with those around them.
Go for an empathy walk
The most supportive people in my community have seen me at my worst (sun-exposure speaking) or have literally walked miles with me while I’m dressed like a ninja, which is how I’m attired when my friends and I go on our annual hike into the gorgeous mountains around Vancouver. By sharing the experience atop a windswept mountain without any shade, my friends get a sense of how I handle EPP and also get a deeper understanding of who I am as a person. During one particularly sunny camping trip I uttered under my breath “see you tomorrow, you goddam bastard” at the sun as it sank into the ocean as our party was finishing dinner. A friend of my sister told me that she didn’t really understand “the whole porphyria thing” before the hike, but totally got it now. She also understands why I will destroy the sun if I ever find myself with the Bond-villain-esque resources to do so!
Everyone deserves empathy. Having empathy means experiencing – or striving to experience – a person’s feelings and it is a pillar of creating inclusive communities.
Make a gesture
Being allergic to the sun is uncommon, so people usually forget about it when we’re interacting. I often have to remind folks that I can’t have Friday drinks on a sunny patio or hit the beach for a friends and family picnic. It makes a big, positive impact on me when people acknowledge what’s different about me and accommodate my situation.
For example, whenever I have a one-on-one with my boss he lowers the blinds and asks if the amount of sunlight is okay, which makes me feel safe and appreciated. In a much grander gesture, during a road trip to Toronto, Kurt, my best friend and co-founder of this website, I got fried from the sun somewhere between Winnipeg and Madison, Wisconsin. We were a long way from our destination and I was in rough shape. At one point I said, “I don’t think that I can make it” and Kurt looked very worried. It was quiet for awhile and then he looked at me with fierceness and said, “We’ll outflank the sun; let’s drive all night and outflank the sun!” We drove through the night, fought sleep-deprivation and insane highways outside of Chicago and arrived in Windsor at 6 AM the next day. I got a day to recover.
Everyone is grateful when their difference – whatever it is – is acknowledged by others. We can showcase our knowledge, empathy and capacity for supportive action in big and small ways every day.
Facilitate escape routes
Being fiercely included can be uncomfortable and isn’t necessary. Inclusiveness means meeting people where they’re at. In an effort to help folks understand and get comfortable with my EPP (for accommodation-purposes, as it’s not contagious), I sometimes riff on the idea of the disability being a genetic mutation, which it kinda is. I pretend that I applied to and was rejected by the X-Men and that this is how my interview went with Cyclops (such an asshole):
Cyclops: “Tell us about your mutation.”
John: “It’s called eurythropoietic protoporphyria – or EPP for short – and it makes me allergic to the sun. Hypersensitive to it, anyway.”
Cyclops: “Allergic to the sun? Okay. So, what kind of powers or gifts do you have because of this, um, allergy?”
John: “Well, I get made fun of a lot for wearing long sleeves, big hats and gloves in the summer, so I’d say that my sense of humour is above average. And I have an uncanny ability for finding shade!”
Cyclops: “Thanks. We’ll call you if there’s an opening.”
So, humour – or attempts at it – was always an escape route for me. I poked fun at myself before others could and the results were almost always good. Any awkwardness evaporated. I also always appreciate when folks don’t feel the need to hyper-include me in everything – sometimes it’s okay to do something different and not everything needs to be accommodated.
Everyone has unique expectations for inclusion and sometimes advocating for folks can get uncomfortable or embarrassing. Offering the choice about how, or if, to participate in an experience is very powerful and very inclusive.
Push (but not too much)
For me, the days spent following over-exposure to sunlight are best spent inside, in the dark, with Netflix, my phone or a book. To this day my dad will test how unwell I really am by recommending activities that require a short time-commitment outside or straight-up assigning me chores, like splitting wood, that allowed me to wear gloves and wield an ax in the cover of shade, but were still outside. My oldest son does the same thing now, but with requests to play. I work with folks with disabilities who appreciate being pushed to do more, especially when they feel confident and supported enough to express concern if it’s too much or if they fail at what’s taken on.
Everyone needs to get a bit more comfortable with being uncomfortable. Just because someone has a disability, is differently abled, and/or has a unique ability it doesn’t mean they’re weak and can’t do more.