Why the picture of Snoopy above? For whatever reason, I have a vivid memory of a Peanuts episode called Snoopy, Come Home. Snoopy goes to visit Lila, his original owner, in the hospital. But in his attempt to get there, he keeps coming across NO DOGS ALLOWED signs, including at the hospital. And each time it happened, ominous music would play and you would hear NO DOGS ALLOWED in a deep gruff voice. If you are tearing up like I am right now, fear not…it has a happy ending.
What does this have to do with today’s blog post. Really nothing at all. But when I thought of the “No Outside Food Allowed” title for this post, it made me think of “No Dogs Allowed”, which made me think of the Peanuts episode.
This proves two things: 1) I keep showing my age; and 2) I’m as scatterbrained as they get. Anyway, on to today’s post.
What do you do when you go to an event where they do not allow you to bring your own food in and force you to buy from their concession stands, even if there are no gluten-free options? And what do you do if the person running the event basically laughs at you when you tell them why you must bring your own food?
This mom and fellow celiac advocate shares an interesting story and isn’t certain if she handled it properly. Read on and let her know what you think.
I have two kids with celiac disease. They participate in sports and have become fairly good athletes.
My daughter plays in volleyball through a club, the primary way that the sport is organized in the U.S. This means that her team travels to sports facilities in our region to play in tournaments sponsored by volleyball clubs. Often the clubs lease or own space, with many running their own concessions to raise money for their clubs. Some prohibit outside food from being brought into the facility in order to increase their revenues. This, I am sure, is not unique to volleyball.
This is our first year on a club travel team, and she has played in a handful of tournaments around our area. When we travel, we pack enough gluten-free food for the day, as well as for the travel night and morning that is sometimes required. Concession stands are not known for their healthy food choices, let alone gluten-free or celiac-safe options. And we often end up in areas where we can’t get or find safe options. Bringing food with us has never been a problem until this past weekend.
We attended a tournament where we were stopped by the club director at the door as we attempted to enter with our small cooler. We were handed an order menu and told that we had to order food from the concession and could bring nothing in. I explained that my daughter needs to eat gluten-free, and that she has celiac disease. He told me that she would need to eat outside.
[Dude note: WTH???]
I asked if all food would need to be eaten outside, and was told that only food purchased onsite could be eaten inside. I told him that her diet needs to be accommodated, as it is considered a disability under the Americans with Disabilities Act.
That’s when he started to laugh at me.
He asked to actually see my daughter (I guess to assess her ‘so-called’ disability?). I told him that not accommodating her is actually illegal; he laughed at me some more and told me that bringing in outside food was actually what is illegal. He told me that she isn’t the only one in the world who eats gluten free, that he knows what it means and that she just needs to avoid grains, and that the concession and their vendor could make her whatever she wanted, gluten-free. I tried to explain about preparation, and cross-contamination, and her reaction. It didn’t matter; he waved me away. My husband tried to explain the difference between gluten-free and celiac-safe, but it didn’t matter as he was not listening.
[Dude note: Again…WTH???]
So, again, the ugly side of advocating rears its ugly head (remember the ‘Jessie’ episode? I was told that I have Munchausen syndrome, should give my kids some bread, shut up and quit whining). This time, I was flustered. I walked away from the encounter on the brink of tears; explaining it to my daughter’s team-mates parents almost put me over the edge. Luckily my daughter was not around, as she would have been beyond embarrassed and humiliated (13 year-olds do not like to be different).
Later, a referee came by with our cooler, telling us that the director did not understand, and that I should do whatever I need to do for her. About an hour or so after that, the director came up to ask me what, exactly, I feed her. I explained about gluten-free ingredients and food preparation. He asked what happens if she doesn’t eat strictly gluten-free. I told him about her symptoms, but explained that many people have no outward symptoms, that celiac disease causes the body to attack itself and can destroy the small intestine. That recovery on the inside takes months. He said he was sorry.
But I was furious with myself. I was unprepared and taken off-guard. Despite having these conversations before, I wasn’t composed and ready. I actually had a dream about this exact situation two nights before. In my dream, I was composed, calm, in control. In reality, I felt helpless and furious.
So I decided that, as a child of the 70s and 80s, knowledge is power, the more you know, etc. etc. I sent the club a letter outlining what happened, giving information on celiac disease and resources like the Celiac Disease Foundation and the National Foundation for Celiac Awareness. And I told them about the ADA. On that subject, here’s what I learned:
- The club and its facilities must make reasonable accommodation for those with celiac disease who are protected under the Americans with Disabilities Act. In a letter to the club, I cited the general purpose and definitions, general and specific requirements, including reasonable modifications, and enforcement provisions from subparts A, B, C and E.
- The ADA specialists at the U.S. Department of Justice are exceptionally helpful. I called them, and a very nice woman walked me through the relevant sections of the act, and encouraged me to inform the volleyball club that I had contacted the Justice Department. [800-514-0301, MTWR 9:30-5:30, Th 12:30-5:30]
- I will be carrying copies of the ADA with me to future events.
Managing celiac disease is like climbing a mountain – one foot in front of the other, learning from the last step, but always forging ahead.
How’s that for a story? Look, we all think we’d handle certain situations in a specific manner, but when the situation actually occurs, it can be another story. I’d LIKE TO THINK that I would have explained myself as this mom did and when he laughed at me, I would have just walked right past hime and brought my food inside the venue. But the reality is…who knows what I would have done at that moment.
To the mom, I say this: I think you rocked it. You were caught off-guard and in that moment, you did not want to create a scene. I get it. Don’t beat yourself up over it. And the fact that you researched the heck out of the situation so you’ll be totally prepared the next time it happens is totally awesome. Not only that, but by sharing your story, now we’ll all be prepared as well. So thank you.
To the director, I say this: What is your malfunction? Where is your moral compass? You laugh at a woman who is telling you her daughter will get very sick if she cannot eat her own food and then you tell her she has to eat outside? Are we back in the 60’s here? Kudos for apologizing and asking questions later on, but c’mon, common sense goes a long way in these types of situations. This was not a “security” issue. It was a “human” issue. Next time, be more compassionate.
Do you folks see why I detest jokes about the gluten-free diet? Yesterday, I posted on Facebook about the new Girls Eating Gluten instagram account and how they were a bunch of self-absorbed idiots. I got a handful of “lighten up” comments in return (and many in agreement with me too…bless your little hearts).
I assure you I laugh at many of the idiocies in this world we live in. And lord knows I deservedly laugh at myself all the time. But when gluten is a CONSTANT joke, it’s the celiacs that end up taking the brunt of it.
And to me…that just ain’t funny.