Last week I went to a Yankees game with my aunt and sister. Now, I'm not a huge baseball aficionado or anything, unlike my aunt and sister who are Yankees pros, but I love the energy of a game. Well any sporting event really. It's such a special experience to be surrounded by excited, engaged people who are coming together to rally around a common interest. And as someone who spends 99 percent of her time excited about something, it's awesome to be around that energy. Anyway, I was so looking forward to the game that I went and bought a pinstripe jersey and fantasized about the "strictly gluten-free" station that Yankee Stadium has. I mean, I could actually have a beer at a ball game? Maybe even a hot dog? That's pretty much heaven for someone who hasn't had that experience in almost 4 years.
When you have celiac disease, little joys like a beer at a ball game are momentous occasions. You feel normal! You can roll with the rest of your crew and not be different or awkward. It sounds silly, but it can be so difficult to navigate social situations when you have celiac. People just don't understand it. No matter how much they think they do, or how much they want to. What most people don't realize is that when we go out, not only am I inspecting the food like some kind of military operative, but I am constantly vigilant of those around me. It sounds crazy, but I can't tell you how many times people have broken bread or bitten into something gluten-y that has then flown into my drink or food. Or how many times someone has eaten gluten and spit so much when talking that I actively try to cover my mouth so they don't spit in it!
Suffice to say, I was ecstatic at the prospect of enjoying some GF goodies at a social event. When my family and I made our way down to the station, I excitedly ordered a Red Bridge beer and began looking at the food selection. My joy was short-lived when I realized, to my absolute horror, that one of the women behind the station was eating an oatmeal cookie. A gluten-filled oatmeal cookie. As if that wasn't scary enough for a celiac, the crumbs were literally falling out of her mouth all over the grill. So okay, that's pretty unhygienic on its own. But beyond that, she was getting gluten all over what was supposed to be a gluten free haven!
Plus, the box of cookies was completely open and right next to the plastic cups my beer had just been poured into. It was an exceptionally windy day; what if crumbs had flown into my cup? How can I know for sure? If they didn't, I'm sure this woman's half eaten crumbs would have dribbled into it anyway.
My heart sank.
As the other woman behind the register poured my beer, the cookie eating woman let out a laugh, launching crumbs everywhere.
My sister (who is the greatest gluten-free ally of all time) looked at me and said something to the effect of, "Hannah, you should definitely get a new beer. That one isn't safe."
I knew she was right and asked the woman for a new beer.
My aunt and sister, poised to rise to my defense, were disgusted when the woman scoffed and said as pointedly as humanly possible: "... are you KIDDING me? I don't believe this!"
Launching to my defense, my aunt and sister explained that celiac disease is a DISEASE not an allergy, not a preference, a DISEASE that could kill me.
Rolling her eyes and laughing, the woman went to another supervisor at the station, who explained that absolutely she should get me a new and safe beer.
But it didn't matter. The damage had been done. The woman's cruelty in being so callous about my disease really hit me hard. She was acting as if I was some spoiled princess. Listen, I have a million and a half food allergies (not really, but you get the point) and I ignore basically all of them, except for my nut allergy. I'm not some picky person, but gluten will literally kill me. Not only will I be sick for a week, unable to think, unable to sleep, not functional enough to even work; but the compounded effects of gluten exposure can cause me to develop additional autoimmune diseases, neurological problems, or cancer.
So really, at a gluten-free station, the standards of operation should serve the community who actually NEEDS to be gluten-free to live; otherwise there is no point to having a station at all. Non-celiac gluten sensitivity and gluten allergies are real and painful, and people who suffer from them must be treated with the same care and dedication as someone with celiac disease. But, as unpleasant as their experience may be, people with a gluten allergy or intolerance won't die if they are cross contaminated. But someone with celiac very well could, albeit down the line. So why wouldn't a gluten-free station be strict and operate at a level suitable for those with celiac disease? Being gluten-free for me is not a preference; it is a prescription.
The only thing to do in these situations is to educate. Knowledge is power.
Of course we still had an amazing time at the game, and I was filled with joy over my family understanding my disease since so many people out there don't. And of course, in light of the world we live in, this is nothing compared to what goes on in our world every day. As far as injustices go, this does not even make the list. But, it is an experience that I can speak to, and one which I think is incredibly important to share.
If you have experienced something similar and would like to share your story, I encourage you to comment below or email me directly at hannah.crane@nyu.edu. Sharing our stories not only makes us stronger as a community, but also lets us know that we are not alone.