Sunday, September 13, 2009

The Insensitive Ignorant

Whenever it comes up that I cannot eat wheat products, someone will inevitably exclaim something like, "Oh, I just couldn't live without bread!" 

I have two well rehearsed responses to this kind of declaration. 

One is more polite and diplomatic and it goes like this, 
"It's amazing what you can live without if it means you will live." 

Another is not so polite and confronts the premise directly and goes like this, 
"Then if you were me, you would be dead." 

Over a decade of this same scenario has played out. I'm using the second phrase more frequently. Meeting me may be the first time someone has ever been confronted with such a notion, but I have had to deal with hundreds of such ignorant interactions. Forgive me if my patience is wearing thin when I did not ask to be this kind of educator. I try to be kind, but I would like some of that compassion directed back my way!

This is not just because the person is insensitive due to ignorance. I mean, not many people feel free to walk up to a person in a wheel chair and say, "Oh, I just couldn't live without walking." Most people have become sensitive to certain kinds of differently abled people being in their midst and appreciate what they can do. But, people do not see my disease and disabilities in the same way- mostly because they are not visible in the same ways and I became a master of covering what has been visible. Most folks simply don't understand that food can be deadly, especially if they eat it and are "fine." 

I also say these things to remind myself. It is challenging to deal with constant peer pressure, put downs, disbelief, dismissal, and all sorts of other negative emotional influences people throw out there. "You can't possibly be right!" "That doesn't make any sense!" "One taste can't be that big of a deal." "I would be so depressed if I had to live the way you do." Those are exactly the thoughts and premises that will get me into trouble, and they illuminate how American culture embraces justifications, rationalizations, and excuses. It's really not too hard to be in control over what goes in my mouth. Just a taste will hurt. I really don't need people encouraging me to hurt myself for a 30 second experience in my mouth. That's not very nice. I wish folks would stop doing that- and then my life would be less depressing! 

I am breaking the food addiction of American culture. 

Where there is a will, there is a way. 


  1. Living with any disability is so hard, visible or invisible. I'm sympathetic to the invisible ones especially. For example, our friend, Tom, with the TBI, hears all the time, "But you look so good!" Isn't it interesting how we equate "looking good" with health? It's probably somewhat adaptive (e.g., in an evolutionary sense, we were shaped to have this response) but really, we are also creatures who can learn, and we should learn not to make statements like the ones you document!

  2. Miss Arden,

    I struggle with this too, and I really fear my child will be dealing with this in school when he's older. One taste really can hurt us. I must also add that I have found the diet a blessing. Like the time, when my son was three, the other kids (also 3) were eating glazed donuts for breakfast, served to them by the public school system. I wonder how much damage the other junk in the "food" is doing to young and old alike. At times like that I'm glad to have a good excuse to avoid the modern diet.
    I wish you the best of luck. This diet dosen't just build good health, it builds character as well. Just keep smiling, hold you head up and let your class shine through.

  3. The one I hate most is, "I wish I could be skinny like you" or "You're lucky you're so thin". They don't realize it comes with a price.