Saturday, March 8, 2014

Learning To Balance On The Thin Line Between Food Allergy Advocacy & Hate

Because I am on the road all of the time testing out new places and sometimes dragging my daughter along, we have to be willing to subject ourselves time and again with some extremely frustrating situations. I mean everything, from the blank stare, or asking us back if we meant white bread, to the answer, “You mean sugar free?”

Oh, and there was the time the old man snarled back to my query, “We have nothing gluten free!”, while standing in front of a bag of Lay's chips and a cooler full of Blue Bell ice cream like some gluten free name it.

Just so you know, I had a rare moment and lost my cool on the old man standing behind the lunch counter.
I marched out with my daughter in tow as I yelled, "How rude!" and exited.
My face was burning hot and I thought to myself, as I took deep breaths, that I better not have a heart attack in front of the old coot's place and give him the satisfaction of winning.

Within minutes, I felt completely better after we walked into the BBQ restaurant in town. The place looks like a retro diner and is run by a very flamboyant manager with a Virginia mountain accent.

He proceeded to tell me in a low voice, "Honey, I never go in there because that man is a bigot and an asshole." Imagine that comment with a lisp and a mountain drawl and you have it down pat. My daughter and I laughed all the way home but we were still irked by the man in the café who was so rude.

Clearly, the more that the gluten free diet becomes a trend, people start taking pot shots at it and getting annoyed. This makes remaining positive and steadfast, on the advocacy end, even more vital. Even though I consider myself an advocate, being an advocate means finding a balance between walking away and making a complete ass of myself in the situation. I usually assess it on a case by case basis of picking my battles wisely and seeing them as a negotiation instead of a battle. It isn't going to do the celiac community, or my daughter, any favors to become the crazy ranting mother. Doing so will only perpetuate this crazy hatred we are feeling from some of the public.

We have to also own our own anger as a community. The grieving process causes anger as a part of our loss anyway. We can choose to remain angry or use that same energy and propel it to making positive influence over the negative.

Be aware that as you rant on a blog or commentary, you are setting the example of how the world will perceive us. Too many blogs and online journals are using anger and fear to sell themselves and the response is jaw-dropping. Negativity spreads like cancer and appears to be popular by the sheer numbers of responses. We have to realize the people writing them are just pushing buttons that make the anger response come out. 

Our children are watching us and how we react. We can sow the seeds of change for them or make their struggle harder. I chose to sow seeds to empower them.

Some Positive Advocacy Tips
1. Have patience. We have all grown to be our own advocates because the world is so behind where we are in our learning curve.

2. Be polite and appreciative. Try to approach it with a request and not a demand. I don't know about you, but I am grateful when someone takes the time and energy to make sure we are safe.

3. If someone can accommodate us or not, the tact with which they handle us goes a long way. If I feel slighted, I try to handle it professionally and tell them thank you with a hand shake if possible. Clearly, I failed miserably with the old coot above and that’s OK, since we are all human.

4. If we are told that they have gluten free food but do not recommend it for celiacs, we politely thank them and explain that we feel it is not ethically right for them to claim anything is gluten free if it is not. This applies for those who put disclaimers and do not offer assurances of ANY safety practices.

5. If my daughter becomes ill from eating, I call the manager and politely tell him what has occurred and that I want him to be aware. Their response will either assure me, or tell me everything I need to know about their policies. Dedication & passion shine through every time.

6. We leave without a fuss and use social media as our last recourse due to the damage it can inflict and how the rest of the world will view the celiac community. Right now many have unfortunately developed this sense that we are like spoiled children throwing fits.

7. We return to places that accommodate us well and support them.