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Health vs. High Maintenance: What I Want People to Understand About Living Gluten Free

jessieMy inbox lit up last week. Friends, acquaintances, people I barely know — all people who know I am gluten free. They wanted my signature on a petition created to pressure Disney into pulling an episode of the popular show (even in my own house) Jessie. The episode features a gluten-sensitive child who is mocked and portrayed as high maintenance. It culminates in him having a meltdown after a pancake is tossed at him.

Apparently there are a lot of gluten-free kids out there and this episode was upsetting to them. I don’t doubt that for one minute. Being gluten free is not a trendy lifestyle “choice”  or trend for many of these kids. It’s a medical necessity. This is the case for me as well, and has been the case for over a decade.

 When I eat away from home I do grill people. Not because I like to do it. It’s embarrassing and exhausting. I’ve written about it on my own blog. I hate my guts. I hate that I have to do this.

Even when I do take all the precautions by asking questions when I dine out, I still get burned. Last fall, for example, I had to leave a conference I was set to speak at, when a server decided some regular pizza probably wouldn’t kill me. I was seriously sick for two weeks. And just last week, I spent Mother’s Day weekend in bed, writhing in agony, debating whether or not to go to the ER. I’d eaten some “100% Gluten Free! Vegan!” cookies at an event a few days prior. Turns out the baker thought spelt was gluten free (it’s not) and was hopping on a trend.

It wasn’t intentional. She simply didn’t realize how serious the implications could be, of her not taking the term “Gluten Free” seriously.  To her it just probably seemed like a trendy and healthy cookie option for her growing company. I get that. But I also got very, very sick.

 

Gluten free is an easy target for mockery because it is so misunderstood. Most people think of it as a superficial lifestyle choice similar to eating “healthy” or “organic” and therefore it’s not taken seriously. The problem is that when you make fun of everyone who is gluten free, you make fun of the people for whom this is a medical necessity, not a choice, as well.

The only way I can guarantee I won’t get sick is if I do not eat the cookies or the pizza, and so on. It’s sad and it’s isolating, but it’s my safest option. It’s a burden, not a choice. The last thing I need is to be mocked, or pressured to eat something that will take me to death’s door. I’m an adult and the mocking gets to me. Kids? Have a heart people!

Seriously… What kid wants to live like this, unable to partake in any treats? Labeled as “different”. Making fun of them for their issues is adding insult to injury.

 

Ultimately, I’m glad the show was pulled, not because it made fun of a nerdy gluten-free kid, but because it was intolerant and cruel, no matter what the kid’s issue. He could have been allergic to nuts, or dairy intolerant, or any number of things that are very real and dangerous for so many kids. I hate to see kids that are different portrayed as whiny, needy, pathetic (and ultimately unreasonable) characters. I actually believe it’s dangerous to seed that idea. My gluten-free pizza server and gluten-free cookie baker probably thought I was being annoying and needy when I grilled them about the ingredients in my food. Would they have thought the same if they’d seen how sick I became?

I’m fine with characters being nerds.  Just leave food allergies and issues out of it. Create a character that is whiny and nerdy without pinning that negative characteristic on entire groups of people who didn’t sign up for their woes. Most of the people I know who have these issues are anything but whiny and wimpy. They are patient, tough and tolerant. They have to be.

I don’t think it’s the job of Disney to promote allergy tolerance. I’d never presume them to, just like I’d never assume that a restaurant will have a gluten free menu. But if they go there, I expect more from Disney.

 

Disney did pull the episode. Kudos for that.

I feel like I should also mention that this past week I went to the Disneyland Resort and I had a gluten-free hamburger in Tomorrowland. I ordered the burger and a chef came out to assure me that the bun would be gluten free and that there was no chance of cross contamination in the french fries either, if I wanted to order fries.  No drama or ridicule. I was treated like a normal person. The burger was tasty. I almost never eat burgers, and it’s always a treat to order one like a “normal” person. I get to be normal at Disneyland. They don’t have to do this, but they do, and they do it responsibly.

Thanks Disney, for pulling the episode, and for doing so much more in real life practice via your actions to assist guests with food issues in the parks.

glutenfreeburger

Image Source: Disney.com

 

 

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