I stand on the outside, looking in.
That’s how I would describe my feeling, as a person with Type 1 diabetes and now celiac disease, in our food-obsessed culture. Outside, looking in.
A couple of weeks ago, I went to a staff meeting at work, scheduled for noontime. Typically at these things, someone orders a meal as a courtesy. It really is a very thoughtful gesture, and the presence of food makes for a convivial meeting. With a fairly new diagnosis of celiac, I am still in a subtractive mode, focused more on what I can’t eat than what I can. In advance of lunch meetings, therefore, I mentally plan what I will eat and what I won’t. For this one I imagined there would be salad, and that I would eat salad, and if I got hungry later I could always have a banana or yogurt from the snack bar in my office building. I arrived at the meeting, ready for salad, and what I faced was a spread of pasta and bread: ziti casseroles, spaghetti and meatballs, and plenty of garlic bread. There were some sliced tomatoes, and I ate those.
Around me, people were enjoying their food and each other. I wasn’t sad. I didn’t feel unliked or neglected. But I wasn’t really with them, either.
It has become the norm that food is central to our lives, not simply as fuel, but as a great source of pleasure, community, economy, and, I dare say, competition. I am hungry, I want to eat, but I am not really part of that discourse. Who makes the best artisan bread or bagels? In these conversations — and, people, they go on all the time! — I am at a remove.
I have tried to find out whether T1D or celiac disease are considered “disabilities” under the Americans with Disabilities Act (ADA). At the most, I understand that it is ambiguous whether chronic illness is equivalent to disability. I’m not sure what I want from the ADA, but it’s not special food accommodations or status for my conditions. No one, beyond my family, is obligated to feed me.
But in my daily life — sometimes hour by hour — I am reminded that this world of food is not for me. And yet I must live in it, and be subjected constantly to the values of people for whom this world is designed. People with physical disabilities, for example, ones who get around in wheelchairs, may look at the built environment in a similar way. Design may make exceptions for them, like ramps and wide bathroom stalls, but these are add-ons to a building’s design; it never starts with difference or diversity in abilities.
Once upon a time, before illness, I was interested in food. I savored it. I overate at holiday dinners. In the 20-plus years since my diagnosis with T1D, however, I have become less and less interested. At the same time, people around me — some friends, some members of my family — have become more and more interested. And I find myself in the odd position of having to be sympathetic to and sometimes even cater to their food desires.
Thanksgiving Day will be celebrated at my house this year. I have a lot of control over what will be served, although it will not be reduced carb or gluten free. There will be the usual turkey, stuffing, gravy, potatoes, vegetables, dinner rolls, cranberries, and, oh!, those desserts. Plenty of carbs and gluten for all.
I will accommodate myself, though. I bought a gluten-free turkey (some brand-name poultry is injected with gluten for moistness and plumpness), a box-mix gluten-free stuffing, and a gluten-free pumpkin pie. I’ll have some of the potatoes and kale salad. My mother is bringing regular stuffing and pies for the normal eaters. (Thanks, Mom!) As others eat for deliciousness, I may be sitting there, counting carbs in my head, bolusing under the table, and wondering what all this food fuss is about.
Image credit: Bakery Window Display, Vancouver Bites! (2010) on Flickr via a Creative Commons license