April 4, 2011

Vigilante gluten-allergy denier and protests against a peanut-allergic child -- what it tells us about the big picture

Last week gluten-allergy blogs around the country were fired up over the intentional deception of a Colorado chef.

Damian Cardone is was a Colorado chef who boasted on Facebook about serving customers high-gluten pasta in place of what was supposed to be gluten-free pasta.  He tried to justify his actions by proclaiming his belief that gluten allergies are mostly imagined issues and that, just as he predicted, no one got sick from his trick.  (I'm guessing he doesn't know that gluten-allergy symptoms might not present themselves until a couple hours after consumption and that wheat ingestion by those with Celiac Disease or a severe gluten allergy could lead to anaphylaxis.)  Mr. Cardone's cavalier admission has led to his firing, his going underground (to avoid lawsuits and death threats, no doubt) and uniform outrage across message boards from food-allergic and non-allergic people alike.

After reading this story I couldn't help but think about the controversy in Edgewater, Florida.  If you haven't heard about it, parents at an elementary school protested against the school's strict protocol for protecting a student with a life-threatening peanut allergy.  Included in the daily protocol were that all students had to wash their hands and rinse their mouths at the start of school and after lunch, parents could not volunteer in the classroom for fear of contamination, teachers were required to frequently wipe down work surfaces, and no outside food (whether they be for kids' lunches or class parties) could be brought into the student's class or nearby classes.  Unhappy parents felt their kids' rights were being sacrificed for the welfare of one child and went so far as to suggest that the child be homeschooled if the normal school environment was that potentially harmful to her health.

The intent of Mr. Cardone and the Edgewater parents is very different.  Clearly, Mr. Cardone disregarded medical science and patrons' requests to satisfy his own personal agenda at the potentially fatal risk for some.  Edgewater parents aren't trying to hurt or exclude the peanut-allergic student out of malice but feel like their school is catering to her needs at the expense of the rest of the students.  A part of me can relate to the families because, as a former elementary teacher I know how much time routines such as hand-washing take away from instructional time.  And I know how students and parents alike love to celebrate holidays and birthdays in class.   

What Mr. Cardone and Edgewater's protesting parents do share in common, however, is strong resentment for having to make accommodations for food-allergic people.  Perhaps they are willing to accommodate some but only so far as it doesn't infringe on their own welfare.  It's likely that none of them have had firsthand or secondhand experience with what it feels like physically, socially, and emotionally, to live with food allergies.

Yes, our society is becoming increasingly friendlier towards food-allergy sufferers with more product labels and restaurant menus listing allergens, allergy-free foods in stores, and gluten-free bakeries in metropolitan areas.  More and more people know of someone with food allergies.  But incidents such as the ones mentioned above remind us that we still have a lot of work to do to bridge the divide between those living and not living with food allergies.

While we at Get Allergy Wise hope to create a strong community for food-allergic families, our best outcome is to use our collective strength to educate the greater community of which we are a part, a community that I wholeheartedly believe wants all kids to feel valued and accepted.

In our society where individual liberties are cherished and priorities are diverse and many, food allergy education must start small -- in our own food-allergic homes first, and then with family, friends, neighbors, and schoolmates.  The simplest and most powerful way to build understanding (and empathy) is through our willingness to share our everyday stories with others. 

We must not lose patience with well-meaning relatives who serve treats only our kids can't eat, or lose patience with strangers who question whether our kids are "really allergic" to all those things, nor can we disavow parents who don't invite us over because of our kids' complicated needs.  For we used to be on that other side.  We are on that other side in any situation where we lack experience.  These awkward situations offer opportunities for teachable moments and real conversations that can lead to deeper understanding and empathy and, ultimately, greater safety for our kids.  We need to take advantage of every chance to be heard because we don't want our kids or anyone else's to be targeted by renegade chefs or excluded from schools. 

We must stay connected to the larger community so that our neighbors and friends can put a face on food allergies, so that our concerns aren't dismissed just as issues of a loud minority, and that complaints aren't taken as personal attacks on individual freedoms.  It cannot be an Us versus Them battle.  If we are to make our families safe in schools, public places, and at home, we must all work together.

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